The Right to Bodily Integrity 1409466078, 9781409466079

488 51 33MB

English Pages 578 [579] Year 2014

Report DMCA / Copyright

DOWNLOAD FILE

Polecaj historie

The Right to Bodily Integrity
 1409466078, 9781409466079

Table of contents :
Cover
Half Title
Title Page
Copyright Page
Contents
Acknowledgements
Series Preface
Introduction
PART I: BODIES, RIGHTS AND INTEGRITY
1 Bodily and Moral Integrity Rights
2 My Body, Your Body, Our Bodies
3 Against the Right to Bodily Integrity: Of Cyborgs and Human Rights
PART II: PREGNANCY AND REPRODUCTION
4 A Defense of Abortion
5 A Feminist, Kantian Conception of the Right to Bodily Integrity: The Cases of Abortion and Homosexuality
6 Sex and the Sacred: Sterilization and Bodily Integrity in English and Canadian Law
PART III: ALTERING CHILDREN'S BODIES
7 The Child's Right to Bodily Integrity
8 Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision
9 Routine (Non-Religious) Neonatal Circumcision and Bodily Integrity: A Transatlantic Dialogue
10 Medicine's Challenge to Relativism: The Case of Female Genital Mutilation
11 Bodily Integrity and the Surgical Management of Intersex
12 Forever Small: The Strange Case of Ashley X
PART IV: TRANSPLANTATION
13 Transplantation and Rights over Our Bodies
14 Confiscating Live Body Parts
15 Hand Transplants and Bodily Integrity
PART V: CONTROVERSIAL MODIFICATIONS AND SURGERIES
16 Should We Prevent Non-therapeutic Mutilation and Extreme Body Modification?
17 Body Dysmorphic Disorder, Radical Surgery and the Limits of Consent
18 Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation
19 Transsexualism and Gender Reassignment Surgery
20 Female Genital Mutilation and Cosmetic Surgery: Regulating Non-therapeutic Body Modification
PART VI: EXPERIMENTATION AND DEAD BODIES
21 Proxy Research Consent and the Decisionally Impaired: Science
22 Last Rights: The Ethics of Research on the Dead
23 Consent and the Use of the Bodies of the Dead
Name Index

Citation preview

The Right to Bodily Integrity

The International Library of Essays on Rights Series Editor: Tom Campbell Titles in the Series: Sexual Orientation and Rights Nicholas Bamforth

Genocide and Human Rights Mark Lattimer

Rights: Concepts and Contexts Brian Bix and Horacio Spector

Animal Rights Clare Palmer

Disability Rights Peter Blanch

Gender and Rights Deborah L Rhode and Carol Sanger

The Right to a Fair Trial Thorn Brooks

Economic, Social and Cultural Rights Manisuli Ssenyonjo

Global Minority Rights Joshua Castellino

Health Rights Michael J. Selgelid and Thomas Pogge

Indigenous Rights Anthony J. Connolly

Citizenship Rights Jo Shaw

Civil Rights and Security David Dyzenhaus

Theories of Rights C.L Ten

Group Rights Peter Jones

Bills of Rights Mark Tushnet

Human Rights and Corporations David Kinley

Environmental Rights Steve Vanderheiden

Prisoners' Rights JohnKleinig

The Right to Bodily Integrity A.M. Viens

The Right to Bodily Integrity

Edited by

A.M. Viens University of Southampton, UK and Ruhr-University Bochum, Germany

O Routledge

g^ Taylor & Francis Croup LONDON AND NEW YORK

First published 2014 by Ashgate Publishing Published 2016 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN 711 Third Avenue, New York, NY 10017, USA Routledge is an imprint of the Taylor & Francis Group, an informa business Copyright © 2014 A.M. Viens. For copyright of individual articles please refer to the Acknowledgements. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. Wherever possible, these reprints are made from a copy of the original printing, but these can themselves be of very variable quality. Whilst the publisher has made every effort to ensure the quality of the reprint, some variability may inevitably remain. British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library. Library of Congress Control Number: 2013954272 ISBN 9781409466079 (hbk)

Contents Acknowledgements Series Preface Introduction

vii xi xiii

PART I BODIES, RIGHTS AND INTEGRITY 1 Jill Marshall (2009), 'Bodily and Moral Integrity Rights', in Personal Freedom through Human Rights Law? Autonomy, Identity and Integrity under the European Convention on Human Rights, Leiden: Martinus Nijhoff, pp. 165-201. 2 Jonathan Herring and P.-L. Chau (2007), 'My Body, Your Body, Our Bodies', Medical Law Review, 15, pp. 34-61. 3 Gowri Ramachandran (2009), 'Against the Right to Bodily Integrity: Of Cyborgs and Human Rights', Denver University Law Review, 87, pp. 1-57.

3 45 73

PART II PREGNANCY AND REPRODUCTION 4 Judith Jarvis Thomson (1971), 'A Defense of Abortion', Philosophy and Public Affairs, 1, pp. 47-66. 5 Helga Varden (2012), 'A Feminist, Kantian Conception of the Right to Bodily Integrity: The Cases of Abortion and Homosexuality', in S.L. Crasnow and A.M. Superson (eds), Out from the Shadows: Analytical Feminist Contributions to Traditional Philosophy, Oxford: Oxford University Press, pp. 33-57. 6 Kristin Savell (2004), 'Sex and the Sacred: Sterilization and Bodily Integrity in English and Canadian Law', McGillLaw Journal, 49, pp. 1093-141.

133

153 179

PART III ALTERING CHILDREN'S BODIES 7 Robert Ludbrook (1995-96), 'The Child's Right to Bodily Integrity', Current Issues in CriminalJustice, 7, pp. 123-32. 231 8 Michael Benatar and David Benatar (2003), 'Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision', American Journal ofBioethics, 3, pp. 35^8. With 'Addendum' with update on HIV/AIDS, 2014. 241 9 Wim Dekkers (2009), 'Routine (Non-Religious) Neonatal Circumcision and Bodily Integrity: A Transatlantic Dialogue', Kennedy Institute of Ethics Journal, 19, pp. 125^6. 257 10 Loretta M. Kopelman (1997), 'Medicine's Challenge to Relativism: The Case of Female Genital Mutilation', in R.A. Carson and C.R. Burns (eds), Philosophy of Medicine and Bioethics: A Twenty-Year Retrospective and Critical Appraisal, Dordrecht: Kluwer Academic, pp. 221-37. 279

vi

The Right to Bodily Integrity

11 Emily Grabham (2012), 'Bodily Integrity and the Surgical Management of Intersex', Body & Society, 18, pp. 1-26. 12 Eva Feder Kittay (2011), 'Forever Small: The Strange Case of Ashley X', Hypatia, 26, pp. 610-31.

297 323

PART IV TRANSPLANTATION 13 T.M. Wilkinson (2011), 'Transplantation and Rights over Our Bodies', in Ethics and the Acquisition of Organs, Oxford: Oxford University Press, pp. 11-28. 347 14 Cecile Fabre (2008), 'Confiscating Live Body Parts', in Whose Body is it Anyway? Justice and the Integrity of the Person, New York: Oxford University Press, pp. 98-125. 365 15 Jenny Slatman and Guy Widdershoven (2010), 'Hand Transplants and Bodily Integrity', Body & Society, 16, pp. 69-92. 393 PART V CONTROVERSIAL MODIFICATIONS AND SURGERIES 16 Thomas Schramme (2008), 'Should We Prevent Non-therapeutic Mutilation and Extreme Body Modification?', Bioethics, 22, pp. 8-15. 17 Tracey Elliott (2009), 'Body Dysmorphic Disorder, Radical Surgery and the Limits of Consent', Medical Law Review, 17, pp. 149-82. 18 Tim Bayne and Neil Levy (2005), 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation', Journal of Applied Philosophy, 22, pp. 75-86. 19 Heather Draper and Neil Evans (2006), 'Transsexualism and Gender Reassignment Surgery', in D. Benatar (ed.), Cutting to the Core: Exploring the Ethics of Contested Surgeries, Lanham, MD: Rowman & Littlefield, pp. 97-110. 20 Sally Sheldon and Stephen Wilkinson (1998), 'Female Genital Mutilation and Cosmetic Surgery: Regulating Non-therapeutic Body Modification', Bioethics, 12, pp. 263-85.

419 427 461 473 487

PART VI EXPERIMENTATION AND DEAD BODIES 21 Karen J. Maschke (2003), 'Proxy Research Consent and the Decisionally Impaired: Science, the Common Good, and Bodily Integrity', Journal of Disability Policy Studies, 13, pp. 254-60. 513 22 T.M. Wilkinson (2002), 'Last Rights: The Ethics of Research on the Dead', Journal of Applied Philosophy, 19, pp. 3 l^t 1. 521 23 T.M. Wilkinson (2012), 'Consent and the Use of the Bodies of the Dead', Journal of Medicine and Philosophy, 37, pp. 445-63. 533 Name Index

553

Acknowledgements I would like to thank Diana Aurenque, David Benatar, Wim Dekkers, Brian Earp, Cecile Fabre, Jill Marshall, Gowri Ramachandran, Laurie Shrage, Jennifer Slatman, Helga Varden, Stephen Wilkinson, and especially Muireann Quigley, Thomas Schramme and T.M. Wilkinson for all of their helpful and thoughtful advice on the volume and for discussion about the right to bodily integrity. I would also like to thank Tom Campbell and Dymphna Evans for their encouragement and support on the project. A.M. VIENS

Ashgate would like to thank our researchers and the contributing authors who provided copies, along with the following for their permission to reprint copyright material. The Johns Hopkins University Press for the essay: Wim Dekkers (2009), 'Routine (NonReligious) Neonatal Circumcision and Bodily Integrity: A Transatlantic Dialogue', Kennedy Institute of Ethics Journal, 19, pp. 125^6. Copyright © 2009 by The Johns Hopkins University Press. Reprinted with permission of The Johns Hopkins University Press. Koninklijke Brill NV for the essay: Jill Marshall (2009), 'Bodily and Moral Integrity Rights', in Personal Freedom through Human Rights Law? Autonomy, Identity and Integrity under the European Convention on Human Rights, Leiden: Martinus Nijhoff, pp. 165—201. The McGill Law Journal for the essay: Kristin Savell (2004),' Sex and the Sacred: Sterilization and Bodily Integrity in English and Canadian Law', McGill Law Journal, 49, pp. 1093-141. Copyright © 2004 McGill Law Journal. Reproduced under a licence granted by COPIBEC. Oxford University Press for the essays: Jonathan Herring and P.-L. Chau (2007), 'My Body, Your Body, Our Bodies', Medical Law Review, 15, pp. 34-61. Copyright © 2007 The Author; Helga Varden (2012), 'A Feminist, Kantian Conception of the Right to Bodily Integrity: The Cases of Abortion and Homosexuality', in S. Crasnow and A. Superson (eds), Out from the Shadows, Oxford: Oxford University Press, pp. 33-57. Copyright © 2012 Oxford University Press; T.M. Wilkinson (2011), 'Transplantation and Rights over Our Bodies,' in Ethics and the Acquisition of Organs, Oxford: Oxford University Press, pp. 11-28. Copyright © 2011 T.M. Wilkinson; Cecile Fabre (2008), 'Confiscating Live Body Parts', in Whose Body is it Anyway? Justice and the Integrity of the Person, New York: Oxford University Press Inc., pp. 98-125. Copyright © 2008 Cecile Fabre; Tracey Elliott (2009), 'Body Dysmorphic Disorder, Radical Surgery and the Limits of Consent', Medical Law Review, 17, pp. 149-82. Copyright © 2009 The Author; T.M. Wilkinson (2012), 'Consent and the Use of the Bodies of the Dead', Journal of Medicine and Philosophy, 37, pp. 445^63. Copyright © 2012 The Author.

viii

The Right to Bodily Integrity

Gowri Ramachandran for the essay: Gowri Ramachandran (2009), 'Against the Right to Bodily Integrity: Of Cyborgs and Human Rights', Denver University Law Review, 87, pp. 1-57. Copyright © 2009 Gowri Ramachandran. Rowman & Littlefield Publishers, Inc. for the essay: Heather Draper and Neil Evans (2006), 'Transsexualism and Gender Reassignment Surgery', in D. Benatar (ed.), Cutting to the Core: Exploring the Ethics of Contested Surgeries, Lanham, MD: Rowman & Littlefield Publishers, Inc. pp. 97-110. Copyright © 2006 by Rowman & Littlefield Publishers, Inc. SAGE Publications for the essays: Emily Grabham (2012), 'Bodily Integrity and the Surgical Management of Intersex', Body & Society, 18, pp. 1-26. Copyright © 2012 The Author; Jenny Slatman and Guy Widdershoven (2010), 'Hand Transplants and Bodily Integrity', Body & Society, 16, pp. 69-92. Copyright © 2010 The Author; Karen J. Maschke (2003), 'Proxy Research Consent and the Decisionally Impaired: Science, the Common Good, and Bodily Integrity', Journal of Disability Policy Studies, 13, pp. 254-60. Springer Science and Business Media for the essay: Loretta M. Kopelman (1997), 'Medicine's Challenge to Relativism: The Case of Female Genital Mutilation', in R.A. Carson and C.R. Burns (eds), Philosophy of Medicine and Bioethics: A Twenty-Year Retrospective and Critical Appraisal, Dordrecht: Kluwer Academic Publishers, pp. 221-37. Copyright © 1997 Kluwer Academic Publishers. Printed in the Netherlands. With kind permission from Springer Science and Business Media B.V. Taylor & Francis (http://www.tandfonline.com) for the essay: Michael Benatar and David Benatar (2003), 'Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision', American Journal of Bioethics, 3, pp. 35^8. Copyright © 2003 The MIT Press. The University of Sydney Institute of Criminology and Robert Ludbrook for the essay: Robert Ludbrook (1995-96), 'The Child's Right to Bodily Integrity', Current Issues in Criminal Justice, 7, pp. 123-32. John Wiley & Sons, Inc. for the essays: Judith Jarvis Thomson (1971), 'A Defense of Abortion', Philosophy and Public Affairs, 1, pp. 47-66. Copyright © 1971 Blackwell Publishers. Reproduced with permission of Blackwell Publishing Ltd; Eva Feder Kittay (2011), 'Forever Small: The Strange Case of Ashley X', Hypatia, 26, pp. 610-31. Copyright © 2011 by Hypatia, Inc.; Thomas Schramme (2008), 'Should We Prevent Non-therapeutic Mutilation and Extreme Body Modification?', Bioethics, 22, pp. 8-15. Copyright © 2007 The Author. Journal compilation © 2007 Blackwell Publishing Ltd; Tim Bayne and Neil Levy (2005), 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation', Journal of Applied Philosophy, 22, pp. 75-86. Copyright © 2005 The Society for Applied Philosophy. Published by John Wiley & Sons; Sally Sheldon and Stephen Wilkinson (1998), 'Female Genital Mutilation and Cosmetic Surgery: Regulating Non-therapeutic Body Modification', Bioethics, 12, pp. 263-85. Copyright © 1998 Blackwell Publishing Ltd; T.M. Wilkinson (2002), 'Last Rights: The Ethics of Research on the Dead', Journal of Applied Philosophy, 19, pp. 31^1. Copyright © 2002 The Society for Applied Philosophy. Published by John Wiley & Sons.

The Right to Bodily Integrity

ix

Every effort has been made to trace all the copyright holders, but if any have been inadvertently overlooked the publishers will be pleased to make the necessary arrangement at the first opportunity. Publisher's Note The material in this volume has been reproduced using the facsimile method. This means we can retain the original pagination to facilitate easy and correct citation of the original essays. It also explains the variety of typefaces, page layouts and numbering.

This page intentionally left blank

Series Preface Much of contemporary moral, political and legal discourse is conducted in terms of rights and increasingly in terms of human rights. Yet there is considerable disagreement about the nature of rights, their foundations and their practical implications and more concrete controversies as to the content, scope and force of particular rights. Consequently the discourse of rights calls for extensive analysis in its general meaning and significance, particularly in relation to the nature, location of content of the duties and responsibilities that correlate with rights. Equally important is the determination of the forms of argument that are appropriate to establish whether or not someone or some group has or has not a particular right, and what that might entail in practice. This series brings together essays that exhibit careful analysis of the concept of rights and detailed knowledge of specific rights and the variety of systems of rights articulation, interpretation, protection and enforcement. Volumes deal with general philosophical and practical issues about different sorts of rights, taking account of international human rights, regional rights conventions and regimes, and domestic bills of rights, as well as the moral and political literature concerning the articulation and implementation of rights. The volumes are intended to assist those engaged in scholarly research by making available the most important and enduring essays on particular topics. Essays are reproduced in full with the original pagination for ease of reference and citation. The editors are selected for their eminence in the study of law, politics and philosophy. Each volume represents the editor's selection of the most seminal recent essays in English on an aspect of rights or on rights in a particular field. An introduction presents an overview of the issues in that particular area of rights together with comments on the background and significance of the selected essays. TOM CAMPBELL Series Editor Professorial Fellow, The Centre for Applied Philosophy and Public Ethics (CAPPE), Charles Sturt University, Canberra

This page intentionally left blank

Introduction The right to bodily integrity has become one of the most discussed rights within moral, political and legal discourse. Indeed, next to the right to life, the right to bodily integrity is often cited as one of the most important rights that persons have. Nevertheless, it is only recently that the explication and analysis of the content, scope and force of this right has garnered more attention, in particular with a focus on how a better understanding of the nature of this right will contribute to determining whether a multitude of clinical and research activities in medical practice should be seen as culturally, morally and legally permissible. As more scholarly and public policy attention is given to this right and its implications, it has become clear that there is a multitude of considerations and interpretations underlying the right to bodily integrity. So much so that it raises the question of whether bodily integrity is a contested concept or whether, in many cases, scholars and practitioners are talking past each other when they believe they are talking about the same thing. The right to bodily integrity has been claimed to be grounded in considerations such as ownership, sovereignty, dignity and privacy. This right is said to be manifested in different ways, such as the maintenance of the wholeness, functionality or inviolability of the body. Further, there are also various putative ways of transgressing the physical integrity of the body that are said to be constituted by particular modes of intervention, such as invasiveness, dismemberment, mutilation or destruction. Further still, over and above the physical harm that can result from such transgressions of bodily integrity, it has also been claimed that distinctive moral harms such as devaluation, defilement and deprivation can result. For this reason, it is possible to get very different claims about the nature of physical integrity and just what would be permitted, prohibited or even required from the existence of a right to bodily integrity. For instance, one might claim that a right to bodily integrity is grounded in personal sovereignty in a way that makes the physical integrity of the body inviolable, thereby making any invasive intervention impermissible without consent. Likewise, someone might claim something completely different. One might claim that a right to bodily integrity is grounded in human dignity in a way that requires us to maintain the wholeness of the body in a way that prohibits any defiling or destructive modification - even if one wants and would consent to such modification. This is not only theoretically significant in terms of clarifying and explaining the nature of a right to bodily integrity, but also has important implications for practice and policy because, depending on which claims about bodily integrity are being relied on, different answers to the question of which interventions or modifications are morally or legally permissible can be given. This volume has been divided into six parts, gathering the most relevant and useful contributions to the literature on the right to bodily integrity and focusing on (i) bodies, rights and integrity, (ii) pregnancy and reproduction, (iii) altering children's bodies, (iv) transplantation, (v) controversial modifications and surgeries, and (vi) research, experimentation and dead bodies. What follows is a summary of the main claims, themes and questions raised by the individual contributions in each part.

xiv

The Right to Bodily Integrity

Bodies, Rights and Integrity Part I begins with an overview of conceptual and substantive issues concerning the nature of rights in relation to the body in its integrity. Understanding the right to bodily integrity will necessarily require further thought and analysis on some conceptually prior questions concerning the nature of the body, its boundaries and how these considerations come to affect our ideas and regulatory mechanisms about the physical integrity of the body. In Chapter 1, 'Bodily and Moral Integrity Rights', Jill Marshall provides an overview of the right to bodily integrity with particular attention to how the right has been approached within legislation and jurisprudence in Europe and at the level of the European Union through a human rights framework. She does so by covering a number of important issues, including unwanted intrusions, physical abuse, treatment of the disabled, medical interventions, abortion and dying. Marshall argues that 'each person's psychic and moral space in which each individual is allowed to evaluate and represent who they are ought to be a legally protected right... of non-intrusion into their body' (p. 3). Jonathan Herring and P.-L. Chau, in 'My Body, Your Body, Our Bodies' (Chapter 2), begin with the deceptively simple question of whether or not our bodies belong to us. While this question is often answered in the affirmative on the basis of understanding the body as deserving protection for reasons of dignity, privacy or property rights, the authors instead argue that it should be answered in the negative. They argue that bodies often interact with each other, depend on other bodies for their survival and are mutable entities constantly altering and regenerating themselves to such an extent that it does not make sense, in any straightforward way, to understand our bodies as exclusively or wholly our own. These considerations of interconnectedness, interdependency and mutability are often overlooked, and will have obvious implications for the different contexts and relationships in which physical integrity will contribute to the complex legal and moral status of the body and what we are permitted to do to our bodies and the bodies of others. In Chapter 3, 'Against the Right to Bodily Integrity: Of Cyborgs and Human Rights', Gowri Ramachandran provides a sustained and negative answer to the question of whether persons should be thought to have a fundamental right to bodily integrity understood either in terms of a dignity-based right or under a property model of rights. Indeed, Ramachandran argues for the strong claim that '[t]he concept of a monolithic, fundamental right to bodily "integrity" is both descriptively and normatively wrong. There should be no legal "right to control one's own body," saleable or not, with a scope that matches up perfectly with the physical borders of the organic, physically continuous human body' (p. 74). Nevertheless, this does not entail a free-for-all in terms of what we can do to our bodies and the bodies of others. We still have fundamental rights that protect persons from the monopolization or consolidation of control over individual human bodies. Pregnancy and Reproduction The topics of pregnancy and reproduction gives rise to especially difficult and complex moral, political and legal questions surrounding the body because there is more than one human entity in question. How we construe the normative significance and status of these entities and their relationship to each other will affect our analysis of what normative considerations exist,

The Right to Bodily Integrity

JCV

especially rights, and how these considerations contribute to determining what we should be permitted or required to do with the bodies involved. Judith Jarvis Thomson, in 'A Defense of Abortion' (Chapter 4), provides what is seen as one of the classic philosophical counterarguments to the view that non-therapeutic abortion is morally impermissible. What makes the argument so widely read and considered is that Thomson argues that we can accept and begin from the premise that foetuses can have rights - a right to life, a right to bodily integrity - and it still need not follow that we ought not allow a pregnant woman to choose whether or not to carry the foetus to term. The assertion of someone having, for instance, a right to bodily integrity is not conclusive in establishing the impermissibility of some intervention or modification. It is merely one relevant consideration that must be taken into account - with this right sometimes carrying the day and other times being defeated by other considerations. Applying her famous violinist thought experiment, Thomson argues that women have a right to decide what happens in and to their bodies including choosing to transgress their own physical integrity and that of the foetus in a way that would prevent the foetus from being born. In 'A Feminist, Kantian Conception of the Right to Bodily Integrity' (Chapter 5), Helga Varden focuses on the case of abortion and homosexuality to explore a distinctive conception of the right to bodily integrity predicated on Kantian notions of freedom and justice. It is argued that there is an analytic relation between persons and their body that can ground a right to bodily integrity. Embodied beings enjoy a sphere of freedom that needs to be taken seriously, so long at it does not unjustifiably impinge on the freedom of others, which speaks against the implementation of coercive restrictions by others against how they want to use their own bodies. According to Varden, such a conception of the right to bodily integrity can entail both a right to abortion and a right to engage in homosexual activities. Kristin Savell, in 'Sex and the Sacred: Sterilization and Bodily Integrity in English and Canadian Law' (Chapter 6), provides an examination of an important yet sporadically examined issue. Using English and Canadian law as a basis for examining the justification for the nonconsensual, non-therapeutic sterilization of persons with learning disabilities, she considers the ways in which law and legal discourse seek to balance considerations of sexuality and gender, preserving a particular social order and the best interests of individuals with respect to the integrity of their bodies. While the Canadian context viewed sterilization as an intrusive, permanent deprivation of reproductive capacity that constituted a violation of bodily integrity, the English context viewed sterilization as involving only a minimal intrusion that conferred protection to learning disabled persons. This essay provides an illustrative example of how different conceptions of the body, sexuality and community can play a role in shaping the right to bodily integrity and the conditions under which we should think it is violated. Altering Children's Bodies One of the most controversial issues surrounding this topic is whether children have a right to bodily integrity - in particular, whether this right entails that we should never alter thenbodies until they can decide for themselves as adults or whether there are some interventions we would be justified in undertaking without their assent or consent. In many cases, the most contentious and oft-focused debate concerns modifying children's genitals. This not only makes the issue highly emotive, but will also involve considering how claims surrounding

xvi

The Right to Bodily Integrity

physical integrity are to be balanced against parental rights to determine what is in their children's best interests or a right to bring up children according to the dictates of one's personal, philosophical or religious beliefs. In Chapter 7, "The Child's Right to Bodily Integrity', Robert Ludbrook argues that not only can children possess a right to bodily integrity but we also have reasons for thinking this right is equally as strong and merits identical protections as afforded to adults. He denies that several possible justifications for denying children a right to bodily integrity, such as dependency and welfare, adult responsibilities, family autonomy and best interests, should be sufficient to enact lesser legal protections. Examining three cases from Australia in which children were held to have lesser rights to bodily integrity than adults would have had in equivalent circumstances, Ludbrook maintains that we often accept problematic double standards with respect to the bodily integrity of children and this needs to be addressed. Michael Benatar and David Benatar, in 'Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision' (Chapter 8), examine, among other considerations, whether non-therapeutic circumcision constitutes bodily mutilation and whether the absence of the child's informed consent makes it wrong. Both considerations have been used to ground the claim that we should understand male circumcision as a violation of bodily integrity. The authors argue that non-therapeutic, neonatal circumcision is a suitable matter for parental discretion. David Benatar has also written an addendum to this paper for inclusion in this volume, which updates some of the developments within the debate that have arisen since the publication of the essay and whether these developments should be thought to impinge on the question of a child's bodily integrity. In 'Routine (Non-Religious) Neonatal Circumcision and Bodily Integrity: A Transatlantic Dialogue' (Chapter 9), Wim Dekkers provides a contrasting examination of male circumcision. He argues that, in the absence of sufficient evidence of benefit for infant males undergoing circumcision that could override considerations of bodily integrity, physicians ought to refrain from performing circumcision on infants for non-therapeutic reasons. This is more forcefully shown, he argues, if we reject a person-oriented approach to integrity predicated on personal autonomy and control against interventions from others to a body-oriented approach predicated on obligations to our own body. According to the latter view, human bodies have an intrinsic value that should prevent us from being allowed to do whatever we want to our own bodies and bodies of our loved ones wholly on the basis of our own preferences and consent. Loretta Kopelman, in 'Medicine's Challenge to Relativism: The Case of Female Genital Mutilation' (Chapter 10), examines the ethical relativism and ethical universalism that is often expressed in the debate over the surgical alternation of the genitals of girls. Mothers who typically seek to have their daughters undergo such alteration are generally thought to hold different, and incorrect, moral and cultural judgements about what it is permissible to do to the bodies of loved ones. Such views are often rejected on the basis of the right to bodily integrity, though such views also face charges of cultural imperialism as a result. Kopelman argues that 'an effective way to debate the merits of our different but entrenched cultural beliefs and values is to employ a common ground of shared values and methods. Despite our cultural differences, we share many values and methods of discovery, evaluation, and explanation' (p. 292). The interculturally shared values and methods of medicine provide a way to move forward on this debate and its relevance for bodily integrity.

The Right to Bodily Integrity

xvii

In Chapter 11, 'Bodily Integrity and the Surgical Management of Intersex', Emily Grabham seeks to further develop our understanding of the right to bodily integrity in cases of surgical interventions that are fundamentally and radically transformative. In the case of surgical modification in patients with disorders of sex development, Grabham maintains that when these people 'experience aesthetic genital surgeries as painful and full of social unease this is not necessarily because the pre-surgical body was the "natural", "whole" or "intact" body prior to surgery. Instead, it is because these surgeries interrupt [bodily considerations] ... intimately linked with social power and possibilities' (p. 297). As our knowledge of the biological, psychological and sociological issues surrounding persons with disorders of sex development continues to improve, this topic and its relation to bodily integrity will be one that both lawyers and ethicists will continue to face with greater frequency. Eva Kittay, in 'Forever Small: The Strange Case of Ashley X' (Chapter 12), examines a fascinating recent case involving the ethical implications of using hormones and removing the uterus and breast buds of Ashley, a 6-year-old girl with severe cognitive and developmental disabilities requiring care throughout her life. The parents sought these bodily alterations in their daughter in order to facilitate their ability to provide lifelong care and her integration within the family. Kittay examines whether Ashley's parents, doctors and the hospital ethics committee acted ethically and whether such bodily alternations should be offered to all children with a similar disorder. Transplantation The topic of bodily integrity in relation to transplantation has been a central issue - both in terms of considerations that affect the willingness of individuals or their families to voluntarily donate and also in terms of setting constraints on what is viewed as permissible in relation to possible policies or intervention practices aimed at increasing the availability of donor organs and parts. The contributions to this section consider how the physical integrity of the body should impact on what are considered permissible transplantation practices and policies. T.M. Wilkinson, in 'Transplantation and Rights over Our Bodies' (Chapter 13), provides an account of bodily rights in the context of organ transplantation from living donors. He begins by setting out a number of essential concepts and distinctions within rights theory, which nicely expand on some of the considerations touched on in Part I, as well as setting the stage for how they specifically relate to the context of transplantation. He maintains that all competent persons possess a personal sovereignty that is protected by rights to bodily integrity and individual autonomy. Nevertheless, such rights are limited in scope and should be understood only as negative rights. Understanding the right to bodily integrity in terms of personal sovereignty, Wilkinson claims, permits both individuals to make organ donation decisions without consulting their family and the alternative option of deferring to the decision of their families or even community members. In Chapter 14, 'Confiscating Live Body Parts', Cecile Fabre provides controversial, yet intriguing and forceful, arguments concerning posthumous organ transplantation. While the right to bodily integrity typically results in a focus on questions of organ procurement, it also tends to ignore important questions about organ allocation. As a matter of distributive justice, it may be required that body parts, if viewed as a scarce resource that can substantially help the least advantaged, should be taken even if deceased persons have not expressed any

xviii

The Right to Bodily Integrity

wishes to donate. Fabre maintains 'if one thinks that the poor's interest in leading a minimally flourishing life, and a fortiori in remaining alive, is important enough to confer on them a right to some of the material resources of the well off, by way of taxation and, in particular, by way of restrictions on bequests and inheritance, one must think that the very same interest is important enough to confer on the sick a right to the organs of the now-dead able-bodied' (Cecile Fabre, Whose Body is it Anyway? Justice and the Integrity of the Person, New York: Oxford University Press, 2008, p. 5). Jenny Slatman and Guy Widdershoven, in 'Hand Transplants and Bodily Integrity' (Chapter 15), focus on aspects of non-organ transplantation affecting bodily integrity that arise from the recent viability of transplanting external body parts such as faces and appendages. Slatman and Widdershoven use a phenomenological narrative perspective in order to explore how we might conceptualize bodily integrity as the subjective bodily experience of wholeness as opposed to actual physical intactness. Using the case of hand transplants, they maintain that the justification for bodily modifications that aim to restore integrity should not be based merely on considerations of physical mutilation, but also on how much being in this mutilated state prevents a person from identifying with their body. Controversial Modifications and Surgeries Often, the right to bodily integrity is thought about in negative terms concerning a sphere of freedom or protection against the unwanted or undesirable interventions of others. Topics such as non-therapeutic or purely cosmetic procedures raise important questions about the positive aspects related to bodily integrity. In particular, whether one's desire and consent to have one's body modified should be thought sufficient to make it permissible, and possibly whether this could also permit or even require others to perform such modifications. Thomas Schramme, in Chapter 16, 'Should We Prevent Non-therapeutic Mutilation and Extreme Body Modification?', provides a concise and incisive examination of the permissibility of body modifications that are undertaken for non-therapeutic purposes and are not seen as aesthetically acceptable by the majority. Schramme sees extreme body modifications as an ultimate test case for liberalism since they directly challenge widely held liberal commitments to anti-paternalism and neutrality. He discusses several reasons for prohibiting these modifications from being allowed, such as duties to self, harm and irrationality. He argues that none of these reasons should be thought sufficient to support a prohibition on adults who voluntarily seek to undergo non-therapeutic modifications of thenbody - even when such modifications are seen as extreme or mutilating. In Chapter 17, 'Body Dysmorphic Disorder, Radical Surgery and the Limits of Consent', Tracey Elliott examines how requests for limb amputation by persons with body dysmorphic disorder are further complicated by the fact that in addition to considerations of bodily integrity, they also raise the question of whether it is appropriate to treat those with psychological disorders with radical surgery. In particular, she is concerned with whether a qualified surgeon who is motivated by the interests and well-being of a patient could be susceptible to criminal liability for amputating the limb(s) of a competent adult who voluntarily seeks the operation. While other areas of medical practice, for example organ transplantation, gender reassignment surgery and cosmetic surgery, have an exception that exists to the general rule that consent is no defence to causing bodily harm in the case of reasonable surgical interference, the limits

The Right to Bodily Integrity

xix

to this exception are uncertain. While the law has generally adopted a somewhat 'hands off approach, leaving such matters of diagnosis and treatment involving transgressing bodily integrity to medical practitioners, this may or may not continue. Tim Bayne and Neil Levy, in 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation' (Chapter 18), also tackle the issue of limb amputation for persons with Body Integrity Identity Disorder (BUD). In this essay, probably the most read and cited philosophical contribution on the ethics of allowing individuals with BUD to have a limb amputated, the authors maintain that the moral considerations in favour of allowing such limb amputations (for example harm minimization, autonomy, therapeutic benefit) outweigh moral considerations against allowing amputations (for example repugnance, indirect effects). Bayne and Levy argue that 'BIID sufferers meet reasonable standards for rationality and autonomy: so as long as no other effective treatment for their disorder is available, surgeons ought to be allowed to accede to their requests' (p. 461). In Chapter 19, 'Transsexualism and Gender Reassignment Surgery', Heather Draper and Neil Evans examine why gender reassignment surgery is a contested surgery and how the surgery should be undertaken in order to be ethically permissible. Of all the surgical interventions examined, gender reassignment surgery is the most radical in terms of bodily integrity. Not only are a person's genitals modified, but alterations to the chest, face, vocal cords, hips or buttocks are often undertaken in an attempt to further enhance the appearance of masculinity or femininity. These fundamental alterations also give rise to important ethical, social and political questions related to bodily integrity concerning how transsexualism should be accommodated more generally, including why transexuals have a right to access these surgeries. While the topic of female genital modification of children was addressed in Part III, the topic returns here with Sally Sheldon and Stephen Wilkinson in 'Female Genital Mutilation and Cosmetic Surgery: Regulating Non-therapeutic Body Modification' (Chapter 20), where they examine whether it would also be permissible to ban female genital modification for competent, consenting women. They examine four arguments that have been advanced to support keeping female genital modification unlawful: (i) no woman could validly consent to it, (ii) it is an oppressive and sexist practice, (iii) it involves the intentional infliction of injury and (iv) it causes offence. Sheldon and Wilkinson argue that (iii) and (iv) are unsound arguments and that, while (i) and (ii) are sound, they are insufficient to justify a ban on such procedures. Experimentation and Dead Bodies A further non-therapeutic reason for intervening in or modifying the human body can also include an attempt to attain or test knowledge for the future benefit of living individuals. Indeed, the enterprise of medical research depends upon such experimentation. Some of these investigations need to take place on dead bodies, and the issue of whether there is such a thing as posthumous interests or a posthumous right to bodily integrity becomes relevant for the scope of the right and its force in practice. Karen Maschke, in 'Proxy Research Consent and the Decisionally Impaired: Science, the Common Good, and Bodily Integrity' (Chapter 21), examines the rationales for using proxy research consent for non-therapeutic experiments on decisionally impaired individuals. She

xx

The Right to Bodily Integrity

finds these rationales lacking - especially justifications for such research based on the common good - on the basis that they conflict with the right to bodily integrity. Maschke maintains that in order to respect the human dignity of decisionally impaired research participants, protected through a right to bodily integrity, proxy research consent should only be permitted in a limited number of cases. In Chapter 22, 'Last Rights: The Ethics of Research on the Dead', T.M. Wilkinson examines the idea of posthumous interests and whether the normative significance of those interests should ground ethical constraints on the kind of research we should be able to undertake with dead bodies. Wilkinson maintains that while there is a symmetry between the interests of living and dead people, using the idea of posthumous privacy as an exemplar, if it is true that posthumous interests - such as the interest in preserving one's bodily integrity - can be sustained long after we die, this will place important limits on the kinds of research we can permissibly undertake with dead bodies. In 'Consent and the Use of the Bodies of the Dead' (Chapter 23), Wilkinson continues his examination of research on dead bodies and the extent to which the bodies we are using can make moral claims on us that limit what we should be allowed to do with them. Typically, so long as the person, when living, provided consent as to what would happen to their body after they died it is often taken as ethically permissible to use their body. Wilkinson considers whether consent is directly required in virtue of the bodily rights people have in relation to the posthumous use of their corpse. He maintains that bodily rights, such as the right to bodily integrity, do not require that consent is always obtained in relation to how people wanted or would have wanted their bodies to be used. While some effort should be made to take rightholders' wishes into account, in setting rules on using dead bodies, mistaken uses of bodies should not be viewed as worse than mistaken failure to use bodies where the living wishes of the individual were not known. Conclusions The contributions to this volume underscore the breadth of topics that the right to bodily integrity underpins. It is a subject that not only has been explicated and clarified by scholarly analysis, but continues to be relevant for numerous public policy issues and debates. As rights discourse, and especially a rights-based approach to moral, political and legal issues, continues to remain popular, sustained attention to the theoretical and practical implications of the content, scope and force of a right protecting the physical integrity of the body remains a central and important endeavour. Seeking answers about how we should be allowed to modify our bodies, what we can do to and with the bodies of others and how such selfregarding and other-regarding bodily modifications affect our relationships and institutions are all essential components of a better understanding of what it takes to live a good life and sustain a good society.

Parti Bodies, Rights and Integrity

This page intentionally left blank

[1]

Bodily and Moral Integrity Rights Jill Marshall Introduction Integrity is defined as "the quality of being honest, fair and good."642 It is with this definition that Ronald Dworkin is concerned in his judicial interpretation.643 Integrity is also defined as "the state of being whole or unified" and as "soundness of construction".644 Bodily integrity has recently been explained as bound up with a claim to exclude others from one's physical space.645 This links to ideas of human dignity which I explored in chapter two in the context of human rights protection of human dignity. It has been argued that each person's psychic and moral space in which each individual is allowed to evaluate and represent who they are ought to be a legally protected right.646 In Drucilla Cornell's theory, law can ensure that everyone has an equivalent chance at the struggle to transform her or himself into a person. In order to ensure that chance, three conditions need to be fulfilled: the protection of bodily integrity, access to symbolic forms, and the protection of the 'imaginary domain'. Cornell describes the imaginary domain as the space for "re-imagining who one is and who one seeks to become."647 This concept overlaps with the sense of the self as a unified whole or as in some sense striving or aspiring towards such a goal, if not psychologically then legally, in terms of legal recognition of their being and existence, and of non-intrusion into their body and their psychological constitution and moral framework.

642 643 644 645 646 647

The Little Oxford Dictionary (Oxford: Oxford University Press 8th Edn 2002). Most fully expounded in Dworkin 1986. The Little Oxford Dictionary 2002. M. Freedland 2007. D. Cornell 1995. D. Cornell 1995 at p. 6.

4

The Right to Bodily Integrity

166

In 1994, Celina Romany condemned: a human rights framework that construes the civil and political rights of individuals as belonging to public life while neglecting to protect the infringements of those rights in the private sphere... Such a framework is criticised for not making the state accountable even for those violations that are the result of a systematic failure on the part of the state to institute the political and legal measures necessary to ensure the basic rights of life, integrity, and dignity of women.648

This situation has changed, at least in terms of the ECtHR's interpretation of Article 8 as providing a right to autonomy, identity and integrity and with the development of positive obligations on the state for the actions of private individuals. This chapter is concerned with the development of a right to integrity under the Court's interpretation of Article 8. However, physical or bodily integrity is arguably protected under Article 3649 and has increasingly been utilised in the sphere of private, as well as public, violations, violence and abuse, including gender-based violence.650 The interpretation of a right to integrity has been treated as requiring states to avoid causing or allowing seriously adverse effects on a person's physical and moral or psychological integrity. It has been argued that human rights law ought to secure human agency, as this is the most basic form of protection needed for one to live a life.651 Unwanted intrusions are instigated and acted upon by the government and state as well as by private individuals and aspects of all of these are analysed in this chapter. It will be shown how certain invasions of one's body and psychological well-being are now clearly seen as violations of Article 8, and indeed may constitute the degree of severity necessary to breach Article 3. The case law is varied and covers topics such as unwanted disclosure of medical information and unwanted medical interventions; physical abuse such as rape and sexual assault both by government officials and by private actors; treatment of the disabled, including issues relating to euthanasia; sustaining individuals' mental health, abortion and giving birth. The case 648 649 650

651

C. Romany 1994 at 85-6. See Judge Tulkens in MC v Bulgaria 2003 and Pitea 2005. This fits into the international protection with the UN and international human rights bodies increasingly acknowledging the right to be free from all forms of violence which affect everyone's life, recognising that some forms of violence are sexually related and gender-based, mostly exercised over women. See J. Marshall 2005 and M. Ignatieff2001.

5

The Right to Bodily Integrity Bodily and Moral Integrity Rights

167

law clearly shows protection against unwanted interferences to a person's bodily or physical integrity and also a person's moral or psychological integrity. It has been asked if an integrity right is a right to privacy and it has been argued that this encapsulates the protection of the nature of others' modification of expression.652 In this connection, such an integrity right has been discussed as expressive autonomy with recognition of the integrity right reflecting the rise in individual rights of expression and "aesthetic-philosophical currents supporting the notion of creative, expressive individualism."653 The way this right has developed gives real strength to arguments of personal freedom as self-determination and includes elements of leaving people alone as well as helping and supporting them to live the lives of their own choosing. Of course, there is overlap here with the other themes developed in this book. To a large extent, many of the violations analysed in this chapter could be covered by a right to privacy, and a negative freedom. In 1997 David Feldman predicted that Article 8 case law was likely to be influenced by three factors, one of which is the way in which the Court gives substance to the novel and under-theorised notion of moral integrity.654 He states that if moral integrity consists of trying to live one's life in accordance with one's ethical standards, the state might fail to respect private life either by significantly limiting the range of choices which one could hope to implement in accordance with one's moral precepts, or by failing to guarantee freedom from the fear that one is subject to pervasive surveillance. As he puts it "[mjoral integrity in this sense demands that we treat the person holistically as morally worthy of respect, organising the state and society in ways which respect people's moral worth by taking account of their need for security." A further extension could compel the state to give practical assistance to those who lack the physical or perhaps financial capacity to give effect to their moral choices. This would thus impose positive obligations on states to provide social and economic rights.655 Feldman has also described personal integrity as a 652 653 654 655

See L.K. Treiger-Bar-Am and M. Spence in Ziegler 2007 pp. 177-187 at p. 178. Ibid., at p. 180. D. Feldman 1997. D. Feldman 1997 at pp. 270-1: he gives examples of euthanasia and abortion rights, and more developments in the field of sexual activity. Feldman sees moral or psychological integrity as a more difficult concept than bodily integrity. It might be engaged by serious interference with a persons ability to pursue a chosen life-style or plan for

6_

The Right to Bodily Integrity

168

collective description of a rather diffuse set of interests concerned with people's abilities to carry on their lives in an autonomous and dignified way.656 Talking of Article 8 in 1999, Feldman notes that the court had not defined moral integrity, but it seems to be related both to dignity and to freedom from coercion in respect of choice concerning one's decisions and life-style. As such, the case law in this chapter relates back to identity rights and to autonomous choices about one's way of life. It particularly highlights that decisions concerning an individual's mental well-being ought not to be taken away from him or her. This case law, in the main, is interpreted as securing protection to a sphere which is that individual's own. Even when socially formed and needing protection in public as well as private places, priority is given to individual wishes and desires confirming in many ways a self-determining version of personal freedom. Yet, again, there are glimmers of a self-realising version when it comes to decisions which the court could be construed as considering undesirable, for example, euthanasia.

Unwanted Intrusions The non-disclosure of confidential information deeply affects many people's moral or psychological integrity. In this sense, the person concerned wishes to keep information about him or herself private and out of public view. They want it to be a decision for them whether or not to share such information, retaining control of it. It can often be of a nature that concerns an intimate aspect of their personality or it could be simply that the person does not want it to be known to others or wishes to select others to so share it with. This provides a sense of control and choice which is discussed in more detail in chapter four and relates to informational autonomy.657 Often the information is of a medical nature and there are usually strict rules and guidelines as to medical notes and records' confidentiality. For example, the British Medical Research Council's Guidance on confidentiality states:

656 657

life which was not protected by any of the other Convention rights such as freedom of religion or the right to marry and found a family: Feldman 1997 at p. 535. D. Feldman 2002. See in particular the discussion of Barber 2007.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

7

169

Respect for private life is a human right, and the ability to discuss information in confidence with others is rightly valued. Keeping control over facts about one's self can have an important role in a person's sense of security, freedom of action, and self-respect. (Personal Information in Medical Research)658

It has been noted that in the number of cases in which patients have relied upon Article 8 when complaining about the disclosure of medical information, it has not proved especially difficult for them to establish that any disclosure of their medical records constitutes a prima facie violation of Article 8.659 The principal obstacle to a successful claim is Article 8(2). In Z v Finland^ the applicant Z was married to X who had been charged with a number of sexual offences. X was HIV positive and in order to find out when he became aware of his HIV status, the police sought and gained access to Z's medical records. During the court hearings against X, Z's identity and her medical data were disclosed. The proceedings were ruled to be confidential for 10 years but Z complained of violations of Article 8 invoking in particular (1) the orders obliging her medical advisers to disclose information about her; (2) the seizure of her medical records and their inclusion in the investigation file; (3) the decisions to limit the confidentiality of the proceedings to a period of 10 years and (4) the disclosure of her identity and medical data in the relevant court judgment. The ECtHR decided that Article 8(1) was engaged: [t]he protection of personal data, not least medical data, is of fundamental importance to a person's enjoyment of his or her right to respect for private and family life as guaranteed by Article 8.661

In relation to items (1) and (2), there was found to be no violation but there were violations of Article 8 as regards (3) and (4) on the Courts reasoning of what was a legitimate aim and proportionality. The nature of the information disclosed was a paramount consideration: in view of the highly intimate and sensitive nature of information concerning a person's HIV status, any state measures compelling communication or disclosure of such information without the consent of the patient call for the most careful scrutiny.. .At the same time, the court accepts that the interests

658 659 660 661

Medical Research Council 2000. See E. Jackson 2006. Z v Finland (1998) 25 EHRR 371. Ibid., at paragraph 95.

8

The Right to Bodily Integrity

170 of the patient and the community as a whole in protecting the confidentiality of medical data may be outweighed by the interest in investigation and prosecution of crime and in the publicity of court proceedings, where such interests are shown to be of even greater importance.

Sufficient justification for interference of this right has been found in the case of disclosure of the applicant's medical records on a limited basis to particular people where there is a need to suppress benefit fraud.662 In other cases involving unwanted intrusions into people's lives and wish to be private, the Article 8(2) justifications are largely successful. In X v the UK663 an obligation to complete a census form was unsuccessfully challenged. Although an interference was found, it was justified as being necessary in a democratic society, here in the interest of the economic well-being of the country. The Commission has also dismissed complaints about a system of identity cards which implied an obligation that they be carried and shown to the police on request. Since the cards 'only' contain information concerning name, sex, date of birth and place of living, the Commission was of the opinion that there was no interference in the private life of the applicant.664

Physical Abuse Physical integrity has been described as straightforward and overlaps with rights to life and other rights to bodily integrity.665 Unwanted physical intrusion, from unwanted touching of a publicly shown part of one's body - say one's arm - through to rape and grievous bodily harm are all physical invasions in some way. In terms of their characterisation as violating one's integrity, this is were psychological and physical are inseparable. The idea of bodily integrity connects to philosophical ideas of ownership of one's body and it certainly not being for anyone else to interfere with

662 663 664

665

See also Peck v the UK Application no. 44647/98 Judgment 28 January 2003. Xvthe UK Application no. 9702/82, D&R 30 (1983) p. 239. FilipReyntjiensv Belgium AppL 16810/90, D&R 73 (1992) p. 136. European Directive 95/46/EC on the Protection of Individuals with Regard to the Processing of Personal Data and on the Free Movement of Such Data (known as the Data Protection Directive). Human Fertilisation and Embryology Act 1990 imposes extra restrictions on the disclosure of information held in confidence by the HFEA. D. Feldman 1999.

9

The Right to Bodily Integrity Bodily and Moral Integrity Rights

171

another's body.666 Interesting observations have been made regarding the effects of invasions of one's bodily integrity. Susan Brison has argued in the face of traumatic memory spurred by sexual assault, autonomy may in fact require us to fragment the self, to compartmentalize and avoid aspects of ourselves that would otherwise immobilize and incapacitate us from acting in the world, forging life projects and moving ahead with life.667 The prevention and punishment, including holding states to account for human rights law violations, treats the victims of such assaults as worthy of respect and recognition so assisting in some way to the rebuilding of their autonomy, identity and integrity. Article 8 may be viewed as overlapping to an extent with Article 3 but it also covers some matters which would not be serious enough to amount to Article 3 treatment. In the case of Costello-Roberts v the UK, concerning the use of corporal punishment, although deciding that on the facts the treatment was not severe enough to violate Article 3 and in the particular circumstances did not fall within Article 8, the Court considered that there may be circumstances in which Article 8 would be viewed as offering wider protection to physical integrity than that offered by Article 3.668 Feldman notes that the Court did not indicate where this might happen, but he gives an example of non-consensual medical treatment which did not inflict suffering of sufficient seriousness to violate Article 3.669 In the case, the Court also left open the possibility that beating a child without parental consent might be a violation of his or her parent's moral integrity as well as the child's physical integrity, as such potentially giving rise to violation of Article 8. Feldman expresses the view that the lawfulness of beating children relates to the parents' autonomy rather than the children's autonomy. So far as the children are concerned, it is their physical and moral integrity and dignity that are mainly threatened.670 The rights protected here overlap with international prohibitions of torture which are absolute. The right to be free from torture has achieved the level of jus cogens and is a peremptory norm of international law. The prohibition admits no exceptions and states cannot therefore derogate from their obligations in this respect. The ECtHR in Chahal v the

666 667 668 669 670

See C. Fabre 2006. See N. Hirshmann 2003 at p. 39. Costello-Roberts v the UK 1993. D. Feldman at p. 535 and H. Fenwick 2002. D. Feldman at p. 694.

10

The Right to Bodily Integrity

172

UK was very clear about the absolute character of Article 3 stressing that it "enshrines one of the most fundamental values of democratic society."671 Rape in custody by state officials was established in Ay din v Turkey to be a violation of Article 3 of the ECHR.672 In Akkoc v Turkey^ the ECtHR found that the applicant's treatment during her detention, which had included electric shocks, physical and sexual abuse and intimidation, was deliberate ill-treatment that caused long-term psychological damage. It was severe enough to be categorised as torture. Similarly in Algur v Turkey>,674 the ECtHR held that physical and mental abuse of a woman in detention violated her right to freedom from torture, inhuman and degrading treatment or punishment. Being deported can also violate Article 3 rights in the context of gender-based violence. In Jabari v Turkey',675 the ECtHR found that there was a real risk of the applicant being subjected to treatment contrary to Article 3 of the ECHR if she returned to Iran and therefore that an order for her deportation to Iran by the relevant administrative court in Turkey would, if executed, give rise to a violation of Article 3.676 In this case, the ECtHR also found a violation of Article 13 which provides for effective remedies with regard to the judicial review proceedings. In Abdulsamet Yamen v Turkey,677 the male applicant's treatment by police in custody, which included sexual violence, was described by the ECtHR as involving very

671

672

673 674 675 676

677

Chahal v the UK (1996) 23 EHRR 413 at paragraph 79. See A. Lester and K. Best 2005. See Aydin v Turkey (Case 57/1996/676/866) (1998) 1 Butterworths Human Rights Cases 300. The Inter-American Court of Human Rights has decided similarly: see Mejia Egocheaga v Peru (Case 10.970; Report 5/96, 1996) (1997) 1 Butterworths Human Rights Cases 229. In Ana, Beatriz and Celia Gonzalez Perez v Mexico, Report No. 53/01 Case 11.565, the Inter-American Commission on Human Rights found that a family of four women who were beaten and gang-raped by Mexican military personnel in detention had been tortured. Akkoc v Turkey (2002) 34 EHRR 51. Algur v Turkey Application No. 32574/96 Judgment 22 October 2002. Jabari v Turkey Application no. 40035/98 Judgment 11 July 2000. At paragraph 40 and 42. A case concerning similar facts was heard at the CAT - AS v Sweden Communication No. 149/1999, UN Doc. CAT/C/25/D/149/1999 (2001). CAT found that substantial grounds existed to believe that the claimant would be subjected to torture if she returned to Iran from Sweden where she had sought refuge. Sweden was held to have an obligation in accordance with Article 3 of UNCAT to refrain from forcibly returning the claimant to Iran. Abdulsamet Yamen v Turkey Application no. 32446/96 Judgment 2 November 2004.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

11 173

serious and cruel suffering that could only be characterised as torture.678 In Devrim Turan v Turkey',679 the applicant claimed that during police custody she had been stripped naked, threatened with rape, beaten, hosed with cold water, subjected to electric shocks and hung from her arms.680 The ECtHR did not find it proven beyond all reasonable doubt that the applicant was subjected to the ill-treatment and found no violation of Article 3 but did find deficiencies in the national courts' handling of the situation enough to constitute a violation of Article 13.681 In S. W. v the f/ATthe ECtHR unanimously rejected the defendants' claims that a UK case removing common law protection of husbands against liability for rape if they have sexual intercourse with their wives without their consent had violated their right under Article 7 of the ECHR not to be subjected to criminal penalties for an act which had not been unlawful at the time it took place. As Feldman aptly puts it: The essentially debasing character of rape is so manifest that the result of the decisions... cannot be said to be at variance with the object and purpose of Article 7... namely to ensure that no one should be subjected to arbitrary prosecution... What is more, the abandonment of the unacceptable idea of a husband being immune against prosecution for rape of his wife was in conformity not only with a civilised concept of marriage but also, and above all, with the fundamental objective of the Convention, the very essence of which is respect for human dignity and human freedom.682

In YF v Turkef^ a husband and wife had been in police custody and the wife alleged she was kept blindfolded, that police officers hit her with truncheons, verbally insulted her and threatened to rape her. The wife was examined by a doctor and gynaecologist while police officers remained on the premises. Following her acquittal due to lack of evidence, five police officers were acquitted of violating her private life by forcing this examination. Relying on Article 8, she claimed that this forced examination violated her right to respect for her private life which covers the

678 679 680 681

682 683

Ibid., at paragraphs 41 and 47. Devrim Turan v Turkey Application no. 879/02 Judgment 2 March 2006. Ibid., at paragraph 12. See also X and Y v Argentina from the I-ACHR Rep. 38/96, Case 10.506 Annual Report of the IACHR at p. 50 where vaginal inspections of prison visitors, were considered "absolutely inadequate and unreasonable" at least in relation to a 13 year old girl subject to this treatment: see further E. Abi-Mershed 2000 at pp. 432-3. S. W. v UK the ECtHR 22 Nov 1995 Series A no. 335-B para. 44. YF v Turkey (2004) 39 EHRR 34.

12

The Right to Bodily Integrity

174

physical and psychological integrity of the person. The Court made clear that a person's body concerns the most intimate aspect of one's private life. Thus a compulsory medical examination violates this. In Wainwright v the UK,684 the ECtHR held there to be a breach of Article 8 by subjecting the applicants to an unduly intrusive strip search. The applicants, Mrs Wainwright and her mentally and physically impaired son, were strip searched during a prison visit. A number of prison rules were breached during the search including Mrs Wainwright being searched in front of a window overlooking the street, both applicants were required effectively to strip naked; neither party was shown a consent form before the search began; the officers put their fingers in the son's armpits, handled his penis and pulled back his foreskin despite the rule that only a visitor's hair, mouth and ears should be touched. Both applicants were distressed by the search and the son developed post-traumatic stress disorder, they brought claims against the UK Home Office in battery, intentional infliction of emotional distress and breach of privacy. The Home Office conceded that the touching of the son's genitals was a battery but the other claims were unsuccessful at the UK House of Lords. Having reiterated that the right to respect for private life includes a right to physical and moral integrity, the ECtHR said there was no doubt that the requirement to submit to a strip-search will generally constitute an interference under Article 8(1 ).685 Although here the searches were carried out in accordance with law and pursued a legitimate aim, which was to stamp out drug taking in prison, they were not held to be proportionate to that aim. Prison authorities must comply strictly with procedures set down for searching prison visitors and by rigorous precautions protect the dignity of those being searched. The officers failed to do so, therefore constituting a breach of Article 8. The treatment was not held to have violated Article 3, not reaching the level of severity required. For that, the search must have "debasing elements which significantly aggravate... the inherent humiliation of the procedure" or have "no established connection with the preservation of prison security and prevention of crime and disorder."686 In Valasinas v Lithuania6*7 where officers obliged a

684 685 686 687

Wainwright v the UK Application No 12350/04, Judgment 26 September 2006. Ibid., at paragraph 43. Ibid., at paragraph 42. Valasinas v Lithuania Application no. 44558/98, 24 July 2001.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

13 175

male prisoner to strip naked in the presence of a female prison officer and touched his sexual organs with bare hands before handling his food the level of severity necessary to violate Article 3 was reached. Similarly in Iwanczuk v Poland6** where a strip search, submission to which was a condition of voting, was accompanied by verbal abuse and derision from guards, Article 3 was also violated. These cases make clear that the right to respect for private life includes protection from unwanted touching and intimate observation.689 One of the most important cases establishing the right to physical and moral integrity as arising from Article 8 is X and Y v The Netherlands.6™ In that case, the Court held that when there is no right under domestic law to bring criminal proceedings for rape, a violation of Article 8 has occurred. In that case, one of the applicants was a handicapped girl who alleged rape but was unable to bring proceedings under Dutch law because of her handicap: it was impossible to file a criminal complaint for alleged rape on behalf of a victim who was over 16 (as the applicant was) and who was not legally capable of lodging the complaint on her own.691 Whilst in that case the court did not see the need to examine Article 3 separately, the matter was more extensively surveyed in the more recent case of MC v Bulgaria^ were the ECtHR found violations of Articles 3 andSoftheECHR. 692 In MC v Bulgaria^ MC claimed that the domestic law and practice of Bulgaria in rape cases and the investigation into her rape did not secure the observance of that state's positive obligations to provide effective legal protection against rape and sexual abuse. MC claimed that when she was 14 years old, she had been raped by two men known to her. The investigation into the allegations was terminated with the conclusion that there had been insufficient proof of the applicant being compelled into having sex. It was found that there could be no criminal act under the relevant provisions of the Bulgarian Criminal Code unless the applicant was coerced into having sexual intercourse by means of physical force or 688 689 690 691

692

Iwanczuk v Poland Application No. 25196/94, 15 November 2001. See also N.A. Moreham 2007. Xand'Yv Netherlands (1985) 8 EHRR 235. Although the right not to be subjected to inhuman and degrading treatment was alleged pursuant to Article 3 of the ECHR, the court deemed it unnecessary to examine this given that it found a violation of Article 8. MC v Bulgaria Application No. 39272/98, Judgment 4 December 2003.

14

The Right to Bodily Integrity

176 threats; thus presupposing resistance. Referring to Recommendations of the Committee of Ministers of the Council of Europe and to the jurisprudence of the International Criminal Tribunal for the Former Yugoslavia (ICTY) on rape,693 the ECtHR found the basic principle common to the reviewed legal systems to be that serious violations of sexual autonomy are to be penalised. The court stated that sexual autonomy is violated wherever the person subjected to the act has not freely agreed to it or is otherwise not a voluntary participant. Given that Article 1 of the ECHR secures the rights and freedoms in the ECHR to everyone, it is perhaps unsurprising that states are required to take measures designed to ensure that individuals' rights within their jurisdiction are guaranteed and not violated, including violations by private individuals.694 Accordingly, the Court stated that Article 3 requires states to take measures designed to ensure that individuals within their jurisdictions are not subjected to illtreatment including ill-treatment administered by private individuals.695 It reiterated that Article 8 imposes positive obligations, involving the possible need for adoption of measures even in the sphere of the relations of individuals between themselves. Although there is a margin of appreciation, effective deterrence against grave acts such as rape, where fundamental values and essential aspects of private life are at stake, requires efficient criminal law provisions.696 The court made clear that states therefore have a positive obligation inherent in Articles 3 and 8 to enact criminal law provisions effectively punishing rape and to apply them in practice through effective investigation and prosecution. Yet the court went further than this. Not only is there an obligation to effectively punish, investigate and prosecute rape, those positive obligations must be seen as requir693

694

695 696

Recommendation Rec (2002) 5. In paragraph 35 of its Appendix, it states that in criminal law, member states should "penalise any sexual act committed against nonconsenting persons, even if they do not show signs of resistance...". The relevant ICTY cases are Furundzija 2000 and Kunarac 2001. The factual circumstances in Kunarac, effectively involving a rape detention centre, amounted to circumstances that were so coercive as to negate the possibility of consent by the individuals held there. See MC v Bulgaria at paragraph 149. A v UK Judgment 23 Sept 1998, Reports of Judgments and Decisions 1998-VI, p. 2699 paragraph 22; Z and others v UK[GC], no 29392/95 paragraphs 73-75, ECHR 2001-V. MC v Bulgaria ibid., at paragraph 149. Ibid., at paragraph 150. The ECtHR has not excluded the possibilities that the states positive obligation under Article 8 may extend to questions relating to the effectiveness of a criminal investigation: ibid, at paragraph 152, citing Osman v UK 1998.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

15 177

ing penalisation and effective prosecution of any non-consensual sexual act including in the absence of physical resistance by the victim.697 So, because the investigations and their conclusions must be centred on the issue of non-consent, and as that had not been done in this present case, the Bulgarian approach was restrictive, practically elevating "resistance" to the status of the defining element of the offence. The Bulgarian government was further criticised for delays in the handling of the case and for attaching little weight to the particular vulnerability of young persons. The system here therefore fell short of the requirements inherent in the states' positive obligations to establish and apply effectively a criminal law system punishing all forms of rape and sexual abuse.698 It was noted by Judge Tulkens in her concurring opinion that it is important to do this analysis under both Articles 3 and 8 since rape constitutes a violation of both physical integrity which she saw as covered by Article 3 and autonomy covered by Article 8.699 The Center for Reproductive Rights has commented that Article 3 could give the right to ensure that laws provide for adequate health services when a crime such as rape occurs. For example, many countries in Central and Eastern Europe could be liable for violations of provisions of the ECHR when medical facilities do not provide emergency contraceptives as part of health-care services for sexual assault victims because of legal or policy restrictions on access to emergency contraceptives or health-care workers' conservative attitudes. The denial of this service it is claimed may rise to the level of inhuman or degrading treatment by unnecessarily putting women at risk of a pregnancy resulting from a crime. The Center take the view that "the European Court of Human Rights has tremendous potential to further the promotion and protection of women's reproductive health

697

698 699

Ibid., at paragraph 166. The court noted that a requirement that the victim must resist physically is no longer present in the statutes of European countries and that the development of law and practice in the area reflects the evolution of societies towards effective equality and respect for each individual's sexual autonomy (at paragraphs 157 and 165). Ibid., at paragraph 185. This point is taken up by Pitea who describes it as Article 3 being used for the purpose of protecting physical integrity in the context of sexual abuses by state officials while Article 8 has been considered relevant where the intrusion into the sphere of sexuality is regarded as violating personal autonomy: Pitea 2005.

16

The Right to Bodily Integrity

178

and rights."700 As to the extent of engaging the ECHR in the provision of contraceptives, abortion and giving birth, see further below.

Treatment of the Disabled Internationally, there are movements to 'mainstream' disability issues and a convention has recently been adopted to explicidy enshrine the international rights of the disabled: The Convention on the Rights of Persons with Disabilities and its Optional Protocol.701 The United Nations express this Convention as marking a 'paradigm shift' in attitudes and approaches to persons with disabilities, taking to a new height the movement from viewing persons with disabilities as "objects" of charity, medical treatment and social protection towards viewing persons with disabilities as 'subjects' with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.702 This Convention aims to have an explicit social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms. It clarifies and qualifies how all categories of rights apply to persons with disabilities and identifies areas where adaptations have to be made for persons with disabilities to effectively exercise their rights and areas where their rights have been violated, and where protection of rights must be reinforced. It has been noted that in the UK in 2005, people with disabilities "... remain more likely to live in poverty, to have fewer educational qualifications, to be out of work, and to experience prejudice and abuse."703 In a case heard by the ECtHR concerning a severely mentally and physically disabled child requiring 24 hour attention, the applicants alleged that certain decisions taken by a hospital authority and its doctors with respect to the treatment of the first applicant interfered with his right to

700 701

702 703

Center for Reproductive Rights at p. 18. This convention was adopted on 13 December 2006 and opened for signature on 30 March 2007: see http://www.un.org/disabilities/default.asp?navid=12&pid=150. Ibid. Cabinet Office Strategy Unit Improving the Life Chances of Disabled People (London: The Stationery Office 2005), Executive Summary.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

17 179

respect for personal integrity.704 The allegations of violations of Article 8 concerned treatment of the boy in a hospital, giving him drugs against the wishes of his mother, the second applicant, and the fact that 'DNR' (meaning do not resuscitate) was written on his medical notes without the knowledge or consent of his mother. The applicants contended that domestic law and practice failed in the circumstances of this case to ensure effective respect for the boy's right to physical and moral integrity within the meaning of "private life" in Article 8.705 The Court considered that the decision to impose treatment on him in defiance of the objections of his mother - his legal proxy - gave rise to an interference with his right to respect for his private life and in particular his right to physical integrity.706 Although the applicants alleged there was an interference with their family life, the Court considered that only examination of the issues raised from the standpoint of the first applicant's right to respect for his personal integrity and regarding the second applicant as his mother and legal proxy were required.707 For the Court, the applicants' contention in reality amounts to an assertion that the dispute between them and the hospital staff should have been referred to the courts and that the doctors treating the first applicant wrongly considered this as an emergency with the hospital trust failing to make a High Court application. The hospital's decision to override the mother's objection to the proposed treatment in the absence of authorisation by the high court resulted in a breach of Article 8. The court therefore did not consider it necessary to examine separately the applicants' complaint in relation to the DNR notice.708 In Price v UK,m the applicant was a female wheelchair user who did not have the use of any of her limbs. She was sent to prison for one week and alleged that whilst in custody she was forced to sleep in her wheelchair, she could not reach the emergency buttons and light switches, and that she was unable to use the toilet. She alleged that she was lifted onto a toilet by a female prison officer but was then left sitting on the

704 705 706 707 708 709

Glass v the MT2004 at paragraph 3. Paragraphs 59 and 61. Citing X and Y v the Netherlands; Pretty v the t/ATand YF v Turkey: at paragraph 70. At paragraph 72. The decision has one dissenting opinion by Judge Casadevall. Price v UK Application no. 33394/96, Judgment 10 July 2001.

18

The Right to Bodily Integrity

180

toilet for over 3 hours until she agreed to allow a male nursing officer to clean her and help her off the toilet. Mrs Price alleged that her treatment constituted inhuman and degrading treatment under Article 3. The ECtHR decided in this case that to detain a severely disabled person in conditions where she is dangerously cold, risks developing sores because her bed is too hard or unreachable, and is unable to go to the toilet or keep clean without the greatest difficulty constitutes degrading treatment in violation of Article 3. In Botta v Italy710 the applicant and his friend who were both physically disabled went on holiday to the sea but there was a lack of bathing facilities equipped for enabling disabled people to reach the sea and the beach. The applicant's claim was unsuccessful under Article 8. The Court noted that Recommendation No R (92)6 of 9 April 1992 of the Committee of Ministers of the Council of Europe urged states to guarantee the right of people with disabilities to an independent life and full integration in society, and recognize society's duty to make this possible* making all leisure, cultural, and holiday activities accessible to them without discrimination. The court also took account of Recommendation 1185 (1992) of the Parliamentary Assembly of the Council of Europe on rehabilitation policies for disabled people, and Article 15 of the Revised Social Charter on the right of people with disabilities to independence, social integration, and participation in the life of the community. The Italian state had enacted laws to give effect to these rights and recommendations. Although the applicant was unsuccessful in his Article 8 claim, the court did not accept the argument advanced by the Italian state and the Commission that positive obligations could not arise under Article 8 in respect of economic and social rights which required a more flexible and discretionary approach than they had argued could have been provided under Article 8. The Court considered that the notion of 'respect' for private life gave rise to positive obligations under Article 8 where there is "a direct and immediate link between the measures sought by the applicant and the latter's private and/or family life the instant case, however ... concerns interpersonal relations of such broad and indeterminate scope that there can be no conceivable direct link between the measures the state was urged to take in order to make good the omissions of the private bathing establishments and the applicant's private life."711 Feldman 710 711

Botta v Italy 26 EHRR 241 at paras 34-35. Ibid., at paragraphs 34-35.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

19 181

has stated that this implies that a state or public authority which accepts an obligation in respect of social or economic rights which directly and immediately affect a person's ability to lead their lives independently to the full may have to discharge that obligation in ways which take account of positive obligations under Article 8.712 Importantly, Sir Nicholas Bratza states in the case that: ... positive obligations may exceptionally arise in the case of the handicapped in order to ensure that they are not deprived of the possibility of developing social relations with others and thereby developing their own personalities... the crucial factor is the extent to which a particular individual is so circumscribed and so isolated as to be deprived of the possibility of developing his personality.

Medical Interventions In line with the developments shown in this book, the conception of privacy developed at the ECtHR has been described as the "broad conception".713 Beyleveld argues that wholehearted adoption of such a broad conception requires the deployment of a 'co-operative' rather than a 'conflict' model of the relationship between privacy values and medical research values. Several cases under Article 8 relate to the issue of medical treatment in the context of physical integrity. In X v Austria714 concerning a compulsory blood test, the Commission held that a compulsory medical intervention even if it is of minor importance must be considered as an interference with the right.715 In Herczegfalvy v Austria the court stated that Article 8 was applicable in the context of the forced administration of food.716 Article 8 protects the patient's right to determine his own medical treatment when competent. In this case, the commission held that the right to respect for a person's private life includes his right to decide himself

712 713 714 715 716

D. Feldman 2002 at p. 536. Beyleveld 2006 at p. 154 and p. 163. Xv Austria Application No. 8278/78, 18 DR 154 at 156. See also X v the Netherlands 16 DR 184. Herczegfalvy v Austria (1992) 15 EHRR 437. And the ECJ court has stated that the right requires that a persons refusal be respected in its entirety. X v Commission of the European Communities [1994] ECR i-4737.

20

The Right to Bodily Integrity

182

whether he wishes to undergo a certain medical treatment.717 It has been argued that where the patient is incompetent, and there is no advance directive, that Article 8 provides the family with a right to be involved in any treatment decisions.718 In the case, the applicant had been convicted of criminal offences and detained in a psychiatric hospital. He complained that detention was unjustified under Article 5, the right to liberty and security of the person, that he had been unnecessarily and involuntarily given sedatives and tied to a hospital bed for weeks contrary to Article 3.719 The Commission said that imposing medical treatment on someone without their consent could violate Article 3. However, although there were held to be violations of Article 8 and Article 5(4), concerning terms of treatment when detained, Article 3 was not found to have been breached. This was because the Court took the view that treatment and care carried out because of therapeutic necessity cannot be regarded as inhuman or degrading treatment.720 This has been described as an unfortunate decision that goes a very long way towards removing the protection of Article 3 standards from one of those people most at risk of having their dignity, autonomy and physical integrity invaded by official action.721 It is noted that Article 3 will normally be violated when a person who is capable of deciding whether or not to accept such treatment is subjected to compulsory treatment except in the rare case like this one where the preservation of life may be necessitated by the treatment when the state is responsible for the welfare of the person as a result of their imprisonment or similar arrangements as in this case. The Court held there was such a breach of Article 3 in Ribitsch v Austria?22 where the Court stated that "any recourse to physical force which has not been made strictly necessary by his own conduct diminishes human dignity and is in principle an infringement of the right set forth in Article 3."723 However, the treatment was justified by reference to the state's responsibilities under Article 2, in respect of the detainee's right to life.724 717 718 719 720 721 722 723

724

At 471. A.R. Maclean 2001 at p. 787 and D. Feldman in 1997. Herczegfalvy v Austria (1992) 15 EHRR 437 at paragraphs 85-92. Ibid., at paragraphs 79-84. See D. Feldman 1999 at p. 693. Ribitsch v Austria Dec 4 1995 Series A no. 336. At p. 26. See analysis by D. Feldman 1999 at p. 693.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

21 183

In X v Denmark, the commission held that medical treatment of an experimental character and without the consent of the patient may under certain circumstances be regarded as prohibited under Article 3.725 It has been noted that the requirement of an experimental treatment will not be easily satisfied.726 This protection is echoed in ICCPR Article 7 expressly stating that no one shall be subjected without his free consent to medical or scientific experimentation. The Court must satisfy itself that the medical necessity had been convincingly shown to exist. Any medical interventions and decisions of the ECtHR in this regard must be read in conjunction with the European Convention on Human Rights and Biomedicine 1997.727 This Convention stresses the respect for the human being as an individual and as a member of the human species and recognises the importance of ensuring the dignity of the human being. In terms of the meaning of Article 3 in this context, the Court has recently stated in Selmouni v France?2* that: having regard to the fact that the Convention is a 'living instrument which must be interpreted in the light of present day conditions', the court considers that certain acts which were classified in the past as 'inhuman and degrading treatment' as opposed to 'torture' could be classified differently in the future. It takes the view that the increasingly high standard being required in the area of protection of human rights and fundamental liberties correspondingly and inevitably requires greater firmness in assessing breaches of the fundamental values of democratic societies.

On the issue of refusal of treatment during pregnancy and how the court may handle this,729 it has been argued that maternal refusal of medical treatment during pregnancy would be recognised as similar to the situation of treatment refusal and hence that Article 8 would be deemed at least to include a pregnant woman's right to refuse medical treatment. In the English case of St George's NHS Trust v S,730 an emergency caesarean

725 726 727

728 729 730

Xv Denmark (1988) 32 DR 282 at 283. E. Wicks at p. 61. Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine (1997), although this document is not legally binding. See also Recommendation 1160 (1991) of the Parliamentary Assembly. Selmouni v France (2000) 29 EHRR 403, 442. See R. Scott 2002 p. 147 ff. St Georges NHS Trust v S [1999] Fam 26.

22

The Right to Bodily Integrity

184 section performed on S against her wishes was held to be a trespass. Judge LJ stated that while pregnancy increases the personal responsibilities of a woman it does not diminish her entitlement to decide whether or not to undergo medical treatment. The judge made clear that an unborn child is not a separate person from its mother and its need for medical assistance does not prevail over her rights: "she is entitled not to be forced to submit to an invasion of her body against her will, whether her own life or that of her unborn child depends on it. Her right is not reduced or diminished merely because her decision to exercise it may appear morally repugnant". On the rights of the pregnant woman and her foetus, the Court's treatment of this issue, particularly by reference to the case of Vo v France will be explored below. Although the Court decided that Article 3 was not violated on the facts of Herczegfalvy, a failure to provide appropriate medical care was found in the circumstances of the case in Hurtado v Switzerland™ It has been noted that since a patient is extremely vulnerable to mistreatment, the result of the treatment withdrawal is death and bearing in mind the ECtHR's comments in Selmouni, it has been submitted that the level of severity required to breach Article 3 would be fairly readily reached.732 This is said to be supported by the Commission's opinion in Warwick v the UK where a single stroke of a cane across the hand of a 16 year old girl in the presence of another man breached the girl's rights under Article 3.733

Mental Health The ECtHR has explicitly stated that mental health must be considered a crucial part of a person's private life. Moral integrity entails a sense of non-invasion from outside influences when one wants that, and for the prerequisites to exist socially for a sense of one's self and moral integrity to be built up by the strengthening of one's mental health. Tied to this is the element of recognition and treating people as of moral worth in and of themselves. These are pre-conditions to enabling a person to live a life in which freedom as self-determination is key.

731 732 733

Hurtado v Switzerland (1994) series A, No. 280. See A. Maclean 2001. (1986) 60 DR 5.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

23 185

In Bensaid v the UK,734 an Algerian national with a diagnosis of schizophrenia complained that his pending deportation to Algeria from the UK would constitute a violation of his human rights. He alleged there would be a violation of his Article 3 rights as he would not receive psychiatric medication in Algeria and this would thus subject him to inhuman and degrading treatment. He also alleged violation of his Article 8 right - it would have a severely damaging effect on his private life in the sense of his moral and physical integrity. No violation of Article 3 was found having regard to the high threshold set by Article 3 particularly where the case does not concern the direct responsibility of the contracting state for the infliction of harm. There was also held to be no violation of Article 8. Interestingly, and somewhat restrictively, the Court said that "not every act or measure which adversely affects moral or physical integrity will interfere with the right to respect to private life guaranteed by Article 8."735 The applicant had not established his moral integrity would be substantially affected to the degree falling within the scope of Article 8. However the court stated that mental health must also be regarded as a crucial part of private life associated with the aspect of moral integrity, reiterating that Article 8 protects a right to identity and personal development, and the right to establish and develop relationships with others. As such, the Court stated that the preservation of mental stability is in that context an indispensible precondition to effective enjoyment of the right to respect for private life.736 Pregnancy, Abortion, Giving Birth and Parenthood Pregnancy and abortion are emotive topics but have been connected in the Court's jurisprudence to the mental health of the mother-to-be. The position of the foetus and the pregnant woman is often presented as one of a conflict of rights — rights of the foetus and the rights of the pregnant woman. Ronald Dworkin describes the connection between a pregnant woman and her foetus in the following terms: "her fetus is not merely 'in her' as an inanimate object might be, or something alive but alien that has been transplanted into her body. It is 'of her and is hers

734 735 736

Bensaid v UK Application no 44599/98, Judgment 6 Feb 2001, (2001) 33 EHRR 10. At paragraph 46. At paragraph 47.

24

The Right to Bodily Integrity

186 more than anyone's' because it is, more than anyone else's, her creation and her responsibility; it is alive because she has made it come alive."737 Dworkin considers contraceptives and abortion to be issues of privacy and sovereignty over personal decisions.738 He argues that most people share the belief that human life is intrinsically valuable such that its destruction is always a very bad thing. However it does not follow that all forms of human life should have rights. He argues that most people share a deep belief in the sanctity of human life and therefore always regard abortion as a morally serious matter. He identifies procreative autonomy - a freedom to make choices about reproduction - as a vital aspect of the concept of human dignity which is a feature of all democratic societies and as one of the "critical interests" of a person's life.739 Unplanned parenthood, particularly for women and unsought motherhood goes to the heart of one's sense of personhood and can deeply affect and damage one's sense of self. It has been argued that the importance of bodily integrity to privacy reasoning does not entail a property analysis of the body but rather a recognition that bodily integrity is central to individual identity.740 Reproductive freedom has been described as fundamental "because it involves the core of a woman's identity — her embodiment, her selfformative processes, her life projects, and her self-understanding are all at stake."741 Lady Justice Arden in a UK case which then proceeded to the ECtHR, Evans, described the ability to give birth as something from which many women obtain a "supreme sense of fulfilment and purpose in life. It goes to their sense of identity and to their dignity."742 In terms of choices people make and the attachments they seek to make throughout their life which are fundamental to their identity, having a child or not is surely high on the list. Many if not most people consider, as Hursthouse has expressed it, that "parenthood in general, and motherhood and childbearing in particular, are intrinsically worthwhile, are among the things that can be correctly thought to be partially constitutive of a flourishing human life."743 Jackson argues that the uniqueness of the bond 737 738 739 740 741 742 743

Dworkin 1994 at p. 55. Dworkin 1994 at p. 106. R. Dworkin 1994 pp. 200-2. J. Cohen in S.I. Benn and G. Gaus at p. 160. J.Cohen at p. 161. Evans v Amicus Healthcare [2004] EWCA Civ 727. R. Hursthouse "Virtue Theory and Abortion" in D. Statman (ed) Virtue Ethics (Edinb

The Right to Bodily Integrity Bodily and Moral Integrity Rights

25 187

that exists between a pregnant woman and her foetus should alert us to her intrinsic interest in defining for herself the scope of her relationship with the foetus that is living inside her body. Thus rather than ascribing some essential and separate moral status to the foetus, Jackson argues that its interests can only be determined in conjunction with a consideration of the interests of the pregnant woman within whom it exists. So we acknowledge the special bond of pregnancy precisely by treating the pregnant woman's moral agency with particular respect. Jackson argues that reproductive freedom is sufficiently integral to a satisfying life that it should be recognised as a critical conviction about what helps to make a life good. In relation to women, a lack of respect for their reproductive autonomy may even involve infringing their bodily integrity.744 A vast amount of women die and suffer every day worldwide because they are pregnant. The intention of the WHO report on Advancing Safe Motherhood through Human Rights, for example, was to facilitate initiatives by governmental agencies and NGOs to foster compliance with human rights in order to protect, respect and fulfil women's rights to safe motherhood. Strategies have been suggested to encourage professional, institutional and governmental implementation of the various human rights in national and international laws relevant to reduce unsafe motherhood, and to enable women to go through pregnancy and childbirth safely.745 All of this suggests that reproductive freedom is needed to sustain a sense of integrity and that the ECtHR should therefore be deciding as such in its case law. However, the Court's case law on abortion has been patchy and on the whole avoids commitments to particular sides. There is a lack of jurisprudence explicitly highlighting that a pregnancy is a matter of a woman's moral and physical intregrity without recourse to debates about public interest and rights to life of a foetus.

744

745

U P 1997) at pp. 227-44. She goes on to say that "if this is right, then a woman who opts for not being a mother... by opting for abortion may thereby be manifesting a flawed grasp of what her life should be... I say 'may thereby: this need not be so." But some are avoiding parenthood for the worthless pursuits of having a good time or the pursuit of some false vision of the ideals of freedom or self-realisation." E. Jackson 2001 at p. 7. See also E. Wicks' discussion of Harris and Robertson who have both developed theories of procreative autonomy and liberty respectively which apply also to medically assisted conception in E. Wicks 2007. R.J. Cook etal. 2001.

26

The Right to Bodily Integrity

188

Since 1976, it has been clear that pregnancy and the interruption of pregnancy are part of private life and also in certain circumstances family life.746 The legal regulation of abortion is an intervention in private life which may or may not be justified under Article 8(2). In Bruggeman and Scheuten v Germany, it was pointed out that legislation regulating the interruption of pregnancy touches upon the sphere of private life which includes establishing relationships with others yet is not solely a matter of the private life of the mother. The Commission declared admissible a complaint about German abortion laws but it subsequently held that there was no conflict with Article 8(1). The case has been criticised for not taking a strong stand on pregnancy being a matter of private life. For example, Loucaides states that "private life must cover pregnancy, its commencement and its termination: indeed, it would be hard to envisage more essentially private elements in life."747 Since the Bruggeman decision, it has been noted that the Court has increasingly recognised a pregnant woman's right to terminate a pregnancy under Article 8, following the liberalisation of abortion laws in almost all of Europe in the late 1970's.748 In Paton v the UK,749 the Commission dismissed the applicant's submission that he had standing to protect his unborn child's right to life and that his right to respect for his private and family life guaranteed by Article 8 had been violated because his partner had sought an abortion. Instead the Commission found that the pregnant woman's right to respect for her private life prevailed, and the need to avert risk of injury to her physical and mental health. Similarly, a male applicant was unsuccessful in Hercz v Norway™ The Commission said that states have a discretion in 'this delicate area'. Any rights of the potential father must first of all take into account the mother's rights, "she being the person primarily concerned with the pregnancy and its continuation or termination". In connection with such decisions of the Commission, van Dijk et al make the point that it is not evident that the woman's right to respect for her private life should rule out the possibility of a man in principle being consulted. Article 8(2) was said to

746

747 748 749 750

Eur. Comm. HR, Bruggeman and Scheuten v Germany, Report of 12 July 1977, DR 10 p. 100. See L. Loucaides 1990 at p. 179. See Center for Reproductive Rights at p. 8. (1980) 3 EHRR 408. Hercz v Norway, Application no. 17004/90.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

27 189

offer sufficient opportunity for the priority of the mother's right should the man refuse his consent. In terms of considering the foetus to have rights under the Convention, in Boso v Italy,751 the Court rejected as inadmissible a complaint that Italian abortion law violated Article 2, saying that such provisions strike a fair balance between the need to ensure the protection of the foetus and on the other hand, the woman's interests. The Court has had to consider on a few occasions applications claiming that the foetus has a right to life under Article 2. In the now leading case of Vo v France7^2 the Court drew heavily on and summarised the Convention jurisprudence on abortion noting that the unborn child is not regarded as a person directly protected by Article 2 and if the unborn do have a right to life, it is implicitly limited by the mother's rights and interests.753 The Court viewed questions such as who is a person and when does life begin to be within the margin of appreciation. The Court did say that it may be common ground that the embryo/foetus belong to the human race. The potentiality of that being and its capacity to become a person may require protection in the name of human dignity, without making it a "person" with the "right to life" for the purposes of Article 2.754 O'Donovan notes that "Convention institutions having previously arrived at a settlement not to upset domestic laws on abortion, the Court feared that a decision on foetal status might re-open this matter."755 The applicant in this case had tragically lost her unborn child through fault by the hospital who had mistaken her for another patient. She claimed that the right to life protected under Article 2 of the ECHR had been violated. The Court took as its starting point a consideration of previous case law relating to abortion, followed by a consideration of the question of when life begins, observing that at European level there is no consensus on the nature of status of the embryo and/or foetus. The Convention on Human Rights and Biomedicine gives no definition of "everyone" and the explanatory report shows that in the absence of unanimity on the definition it was agreed to leave this to domestic law. In its desire to avoid making a morally contentious ruling on the scope of

751 752 753 754 755

Boso v /ta/y Application No. 50490/99 5 Sept. 2002. Vo v France 2004. At paragraph 80. Vo at paragraph 84. K. O'Donovan 2006 at p. 115.

28

The Right to Bodily Integrity

190 a foetal right to life, the court adopted what O'Donovan highlights as a 'neutral stance' and left the determination of any such right to national authorities, by way of the margin of appreciation doctrine.756 The decision on the applicability of Article 2 to foetal life was left in abeyance. Of the majority of fourteen, five judges objected stating that in their view, Article 2 is inapplicable on the basis of two distinct arguments. Firstly, the unborn life is considered worthy of legal protection distinct in quality and scope from that afforded to the child after birth and therefore Article 2 is inapplicable. Secondly, the majority's consideration of the procedural guarantees afforded by Article 2 to the present case was unnecessary and irrelevant if the foetus did not have protection under Article 2. Two judges were of the view that Article 2 applied but was not violated. As O'Donovan explains this preoccupation with the question of when the right to life begins precluded a very different examination of the harm that was done to Mrs Vo that would have provided recognition and primacy to her wish that her foetus continue to live.757 As O'Donovan states [e]xamining this case from the point of view of women whose pregnancies are terminated against their wills takes us back to women's rights to autonomy and bodily integrity.758

And as Barbara Hewson notes, Mrs Vo's right to physical and moral integrity under Article 8 were undoubtedly infringed by the performance of a non-consensual, and entirely inappropriate, medical intervention. However, Mrs Vo did not pursue a complaint based on Article 8.759 Since a medical error led to the death of the foetus and the term abortion is usually confined to voluntary termination the focus on abortion is misplaced. From the point of view of the woman concerned involuntary and voluntary termination of the pregnancy are quite different matters. O'Donovan suggests that Article 12 may have been a better ground for the complaint, thus making the pregnant woman's autonomy and freedom to procreate the focus of legal reasoning. If the woman's rights and interests limit those of the foetus, as acknowledged by the court, why are her rights not central when she intends to have a child? As O'Donovan

756 757 758 759

Ibid., at p. 118. See Judge Ress para. 7, Judge Costa and Traja para. 16. K. O'Donovan 2006 at p. 120. B. Hewson 2005 at p. 372.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

29 191

notes, disentangling the rights of the foetus from those of the mother is difficult. In a wanted pregnancy the foetus is protected by the mother through her body. Interference by a third party against the will of the mother is a violation of her bodily integrity. The Court failed to distinguish the position of the mother from that of third parties and in its lack of clarity about the relationship of a mother with her wanted foetus. The practical point is that there was a third-party interference with Mrs Vo's autonomy and bodily integrity with her life plans and with her relationship with her unborn child. The view has been expressed that explaining this as a question of the child's rights only and that it must be born alive in order to vindicate its rights is inadequate.760 Involuntary termination of a pregnancy against the wishes of the mother is a wrong to her. The law should take seriously the views of mothers in determining how to respond. The diversion of the Court along a definitional path of questions about when life begins and the nature and characteristics of her foetus led the court to lose sight of the relationship between the mother and her potential child, of the mother's reproductive freedom and autonomy.761 In the very recent case of Tysiac v Poland, a violation of Article 8 was found to exist where the applicant had sought an abortion on account of the threat to her health, particularly to her eyesight, during pregnancy but it had been refused.762 The applicant's condition of myopia put her at risk of blindness if her pregnancy was continued. Her sight deteriorated after the birth of her child and she commenced criminal proceedings against the doctors involved. The proceedings were discontinued by a decision of the relevant District Court. The ECtHR's analysis focuses on positive obligations under Article 8, emphasising the positive obligations on states to secure to its citizens their right to effective respect for

760 761

762

K. O'Donovan 2006 at p. 122. K. O'Donovan 2006 at p. 123. In Evans v the UK, the Court made clear that the right to procreate is part of the applicants right to a private life covered by Article 8: see Evans v the UK Application No. 6339/05 Judgment 7 March 2006. Tysiac v Poland Application no. 5410/03 Judgment 20 March 2007. In D v Ireland Application no. 26499/02, Judgment 27 June 2006, the applicant challenged the Irish law on termination of pregnancy which provided for legal abortion only where the life of the woman was in danger and placed restrictions on provision of information on obtaining abortions abroad. The ECtHR decided that she had failed to exhaust domestic remedies. The different handling of these two cases is highlighted by dissenting Judge Borrego Borrego in Tysiac v Poland.

30

The Right to Bodily Integrity 192

Chapter 10

a person's physical and psychological integrity.763 Whilst the Court stated that abortion regulation involves the balancing of privacy with the public interest, it also stressed the fact that state regulation must, in the case of therapeutic abortion, be also assessed against the positive obligations of the state to secure the physical integrity of the mothers-to-be. The applicant had claimed under Articles 3 and 8 that the failure of Poland to make a legal abortion possible in circumstances which threatened her health and to put in place a procedural mechanism necessary to allow her to have this right realised, meant that the applicant was forced to continue with a pregnancy for six months knowing that she would be nearly blind by the time she gave birth. The Court said that the resultant anguish and distress and the subsequent devastating effect of the loss of her sight on her life and that of her family could not be overstated. The Polish system was criticised by the Court who said that any national procedure should ensure that decisions to terminate are timely so as to limit or prevent damage to a woman's health. Poland had failed to demonstrate that its laws as applied to the applicant's case contained any effective mechanisms capable of determining the conditions for obtaining a lawful abortion.764 Absence of any such preventative procedures amounted to a failure of the state's positive obligations. The applicant also argued that the treatment she had been subjected to was inhuman and degrading, breaching Article 3. She argued that treatment was degrading if it aroused in its victim "feelings of fear, anguish and inferiority capable of humiliating and debasing them." The court reiterated its case-law on the notion of ill-treatment and the circumstances in which the responsibility of a state may be engaged, including under Article 3 by reason of the failure to provide appropriate medical treatment.765 In the circumstances, the Court did not find that the facts disclosed a breach of Article 3 and considered it more appropriate to deal with the applicant's complaints under Article 8. The quote from the case which starts this book is worth repeating: The court... reiterates that 'private life' is a broad term, encompassing, inter alia, aspects of an individual's physical and social identity including the right to personal autonomy, personal development and to establish and develop

763 764 765

Ibid., at paragraph 107. Ibid., at paragraph 124. Referring to the case of Ilhan v Turkey Application no. 22277/93, Judgment 27 June 2000 para. 87.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

31 193

relationships with other human beings and the outside world... Furthermore, while the Convention does not guarantee as such a right to any specific level of medical care, the court has previously held that private life includes a person's physical and psychological integrity and that the state is also under a positive obligation to secure to its citizens their right to effective respect for this integrity.766

Dissenting Judge Borrego Borrego criticised the Court's decision presenting a view of human rights law as protecting human dignity and moral autonomy rather than the integrity of the pregnant woman: All human beings are born free and equal in dignity and rights. Today the Court has decided that a human being was born as a result of a violation of the ECHR. According to this reasoning, there is a Polish child, currently six years old, whose right to be born contradicts the Convention. I would never have thought that the Convention would go this far, and I find it frightening.767

It has been stated, in a concurring opinion, that denying a pregnant woman unconditional medical aid could give rise to a violation of both Article 2 and Article 3 of the ECHR.768 The Court has also presented the view, in the concurring opinion of Judge Ress joined by Judge Kuris in the anonymous birthing decision of Odievre, that it is in the general interest for appropriate measures to be taken to protect children's lives by reducing so far as possible the number of abortions, whether legal or illegal. Judge Greve, also concurring, argued that "no society should in the name of the promotion of human rights be forced to leave a woman with abortion as the only apparent safe option." Considering this issue to be one of a mother-to-be's integrity and autonomy reflects the great deal of work carried out in the context of reproduction and abortion in terms of a personal choice.769 Yet, in this literature maternity is conflated with motherhood. Women who continue their pregnancy are generally assumed to want a child; the assumption being that, if they did not, they would terminate the pregnancy. As 766

767 768 769

Tysiac at para. 107, citing Pretty para. 61, Glass v MT61827/00; Sentges v The Netherlands 27677/02 8 July 2003; Pentiacova v Moldova 14462/03; Nitecki v Poland 65653/01 21 March 2002; Odievre v France Application no. 42326/98, Judgment 13 February 2003. Tysiac, dissenting opinion of Judge Borrego Borrego at paragraph 15. Odievre v France concurring opinion of Judge Greve p. 28 of 34. See, for example, S. Sheldon, 1997; E. Jackson 2001.

32

The Right to Bodily Integrity

194 O'Donovan and I have previously argued, conceptual clarity requires a distinction to be made between maternity and motherhood, notwithstanding the assumption made currently that continued gestation signifies an intention to take up mothering770 or at least to be acknowledged as 'mother'. The identity of a woman 'who gives away her child' is less acceptable; she, unlike the surrogate mother or the woman who gives up her child for adoption, is not performing that one last, altruistic, sacrificial, maternal act to promote the welfare of her child. The decision of the mother in Odievre sheds light on the contrasting views of personal freedom as self-determination or self-realisation. For some second wave feminists, children and childbirth issues have been central to arguments about autonomy. Debates over issues such as abortion, extra-uterinebirth, work-life balance, bodily integrity, and making life plans involve arguments about women's freedom of choice: in some shape or form, their autonomy. As O'Donovan has argued, various stories are told of motherhood: they range from natural instinct, to altruism or martyrdom, to self-interest, and unpicking these is difficult. Not only are individual childhood stories of motherhood subjective and particular, but suggestions of a woman's choices after giving birth touch on fears of abandonment and rejection.771 Further, abortion entails a decision being made by the pregnant woman before a child has been born and brought into physical existence outside the woman's body. If an abortion happens, no child will be born. In adoption or abandonment situations, a living child exists. A new person with its own rights exists. Two parents are now responsible for a child's welfare too, not just the woman. Yet as we have seen in chapter eight, the concern for a full sense of one's identity hinging on knowledge of the exact identity of one's biological mother, the birthgiver, is gaining momentum — as if a person cannot be 'whole' unless they know this fact. In the decision, there are assumptions made about the women who give birth with corresponding ideas of their autonomy. The literature on what exactly ability to choose means, and the relation between exercise of choice and ideas of identity, correlate with empirical studies carried out as to why women give birth in secret. There have been two main empirical studies carried out by French feminists in this field.772 Bonnet, the author of one

770 771 772

K. O'Donovan and J. Marshall 2006. See K. O'Donovan 2000a and 2002. See K. O'Donovan 2000a and 2002: these are C. Bonnet 1991 and N. Lefaucheur

The Right to Bodily Integrity Bodily and Moral Integrity Rights

33 195

of the studies, argues that the women involved gave up their children to protect them, as a gesture of love.773 The children were safeguarded from infanticide and abuse because anonymity was a choice for their birthgiver. Bonnet's argument is that a woman's right to give birth anonymously is a fundamental freedom, linked to privacy,774 and is a right to renounce forever the motherhood of a particular child.775 A contrasting empirical study by Lefaucheur adopts a different conception of autonomy. Her emphasis is on hardships of various kinds by the women involved. These reflect not a right to choose but a lack of autonomy and resources. The issues for these women include fear of parental reaction, pressure by parents from a religious or conservative background, personal problems, an inability to cope with another child, domestic violence and large families in economic difficulties.776 To summarise the two positions: [to] Lefaucheur, it is precisely because the X women lack autonomy that they seek anonymity and the consequent adopting out of their child. For Bonnet, however, such action is a mark of choice and freedom, and is a woman's right. Both use the word autonomy but come up with different definitions.777

There are times in life when a sense of commitment places constraints on people's lives from which they may not be able to unbind themselves without self-betrayal and personal disintegration.778 Many would say that giving birth to a baby involves such a commitment and that therefore

773

774

775 776

777 778

2000. See also N. Lefaucheur "The French 'tradition of anonymous birthing: the lines of argument" (2004) 18 International Journal of Law, Policy and the Family 319-342. Which is the title of her book on the subject and was influential in the early 1990s in debates in the French parliament on the issue of anonymous birthing as well as in country-wide debates generally. Of such importance in the French legal system that it is a breach of an aspect of private life to publish without her consent, information that a woman is pregnant, even though her condition is visibly public — see para. 37 of the Odievre judgment. K. O'Donovan 2000a at p. 82, O'Donovan 2002 at p. 363. As mentioned already in chapter eight, the French government in Odievre presented evidence of three main categories of women who chose to give birth anonymously: young women who were not yet independent; young women still living with parents in Muslim families originally from North African or Sub-Saharan African societies in which pregnancy outside marriage was a great dishonour; isolated women with financial difficulties, some the victims of domestic violence. Reasons for seeking confidentiality sometimes included rape or incest. - see paragraph 36. K. O'Donovan 2002 at p. 371. T. Regan 1986 p. 27.

34

The Right to Bodily Integrity

196 anonymous birthing leads to such self-betrayal and personal disintegration and lack of autonomy is a problem. Such views chime with conceptions of the self in some ethic of care or cultural feminist work,779 communitarian conceptions of selfhood,780 and versions of what Helen Reece has described as the "post-liberal self'.781 In some instances, there seems to be a draw towards notions of Authenticity', with inauthenticity seeming to entail that one's actions or decisions are out of line with one's identity. 'Authenticity', as used in this discourse, must be understood in relation to agency and becoming: 'autonomy comes from agency which takes place within a context of becoming'.782 Thus a constrained subject is to strive for authenticity in their actions. It is this achievement that leads to 'authenticity', where actions and decisions fit with one's sense of self. Yet the requirement of a constant effort in seeking authenticity is open to criticism as unattainable. The subject may never reach that desirable state. She may reproach herself in her reflexivity. And in the meantime, practical decisions once taken may not be revocable on reassessment. As already pointed out, the conventional reaction to a woman who 'gives away' her child is one of distaste, even horror. This is an 'unwomanly' woman, one more like the wicked stepmother of fairytales than a 'real woman'.783 Even those sympathetic to her plight may tell the woman that the decision to renounce motherhood after giving birth is a debilitating action. When it is said 'you will regret that later', or 'it is not natural' the message is that the self is divided against the self, that the proposed action is inauthentic.784 As Emily Jackson explains, a person's reproductive choices are shaped by multiple external influences but they are the only choices available and they are therefore of critical importance to one's sense of self. The decision to have an abortion for example is made because for a variety of reasons this particular woman does not want to carry her pregnancy to

779 780 781

782 783 784

C. Gilligan 1982, R. West 1988, A. Rich 1976. M. Sandel 1998, Taylor 1992, Avineri and De-Shalit 1992, Etzioni 1988. H. Reece 2003. Although I use the term here, this version of the self draws on a rich pre-liberal tradition - see, for example, Guignons analysis: Guignon 2004. M. Griffiths, 1995, p. 179. K. O'Donovan 2000a, 2002. H. Reece 2003 argues that the search for authenticity, in following the right path in personal decisions, can be never ending, and is an aspect of the therapeutic state. Eventually this search is coercive, as much so as the traditional rules it replaces.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

35 197

term or give her child away, including in the anonymous birthing system available in France under examination in Odievre. That the woman in question is not in control of all of those reasons should not lead us to ignore her deeply felt preference. Even if it is recognised that social forces may shape and constrain choices, the sense of being the author of one's own actions, especially when they attach to something as personal as reproduction is profoundly valuable to all of us. When we disregard an individual's reproductive preferences, we undermine their ability to control one of the most intimate spheres of their life.785

Dying It is argued that the way one dies is part of one's private life as a matter of personal autonomy. This issue was dealt with by the Court in Pretty v the UK. The applicant suffered from motor neurone disease, a progressive degenerative illness. She wished her husband to assist in her ability to control how and when she died to be spared "...suffering and indignity."786 When she sought assurance from the relevant UK authority that he would not be prosecuted in the event of her death, this was refused. Being unsuccessful at national courts, she took her case to the ECtHR. There she was also unsuccessful. Her arguments were that her Article 2, 3, 8, 9 and 14 rights under the ECHR had been violated. Little analysis is provided of Articles 2, 3 and 9.787 However, Article 8(1) was said to be engaged on the facts of the case.788 The court makes explicit that the right to respect one's private life is a broad term, not given to exhaustive 785 786 787

788

E. Jackson 2001 p. 7. Pretty 2002 at paragraph 8. Article 2 is described by the Court as not concerned with the quality of life or what a person chooses to do with his or her life and it cannot be interpreted to provide a right to die - see Pretty at paragraphs 39 and 40; the applicants claim that the refusal of the DPP to give an undertaking not to prosecute her husband disclosed inhuman and degrading treatment for which the state is responsible as it will thereby be failing to protect her from the suffering which awaits her as her illness reaches its ultimate stages was said to be placing a new and extended construction on the concept of treatment which was unsustainable under Article 3 - see paragraph 54; her opinions and views on assisted suicide did not constitute beliefs in the sense protected by Article 9(1) or manifestations of religion or beliefs - see paragraphs 82-3. Pretty at paragraph 67.

36

The Right to Bodily Integrity

198

definition, protecting a right to personal development, and the right to establish and develop relationships with other human beings.789 The Court observed that the ability to conduct one's life in a manner of one's own choosing may also include the opportunity to pursue activities perceived to be of a physically or morally harmful or dangerous nature for the individual concerned. The Court accepted that how the applicant wished to live her last days was a part of the act of living.790 It has been argued that the period of dying forms part of life and to deny that a provision which prohibits interference with the way in which an individual leads his life relates to the manner in which he wishes to die "seems to involve a fundamental misunderstanding of the conceptual connection between the right to personal autonomy and respect for human dignity, the preservation of which is the underlying objective of all human rights law."791 Pedain expresses the view that the possibility of a chosen death has sometimes been perceived as the very cornerstone of a dignified human existence, which requires that individuals can understand themselves as free human beings, quoting the Roman philosopher Seneca.792 Yet in introducing the concept of human dignity here, there is a risk of imposing standards which Pedain seems to want to avoid.793 It appears she is using it in the 'dignity as empowerment' sense rather than 'dignity as constraint'.794 At paragraph 65, the Court takes the view that: it is under Article 8 that notions of the quality of life take on significance. In an era of growing medical sophistication combined with longer life expectancies, many people are concerned that they should not be forced to linger on in old age or in states of advanced physical or mental decrepitude which conflict with strongly held ideas of self and personal identity.

789 790 791 792 793

794

Pretty at paragraph 61. Pretty at paragraph 64. A. Pedain 2003 at p. 190. A. Pedain 2003 at p. 190. Although covered by Article 8(1), the court considered the prohibition on assisted suicide to be justified pursuant to Article 8(2). The legislative aim of the prohibition is to reflect the public interest in preserving the lives of its citizens and to protect vulnerable persons from acting upon a death wish which may be temporary or induced by undue influences of others or related to personal conditions affecting the validity of their judgments Pedain questions whether an exceptionless prohibition is necessary to achieve these legitimate objectives (Pedain 2003 at p. 192). See chapter two.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

37 199

Writing about euthanasia generally, David Orentlicher has noted that "society recognizes a right to be free of unwanted touching to ensure that individuals have control over their bodies and are able to exercise selfdetermination. Yet a right to euthanasia/assisted suicide would also ensure that individuals have control over their bodies and are able to exercise self-determination. We still need to explain why considerations of personal autonomy are more important with respect to treatment withdrawal than euthanasia/assisted suicide."795 Sylvia Law has described the euthanasia dilemma as concerning at core the individual's desire to retain control over his or her body and life. As Ronald Dworkin explains: "death has dominion because it is not only the start of nothing but the end of everything, and how we think and talk about dying — the emphasis we put on dying with "dignity" - shows how important it is that life ends appropriately, that death keeps faith with the way we want to have lived."796 Ronald Dworkin and other eminent liberal scholars succinctly state the issue to concern the following: "[c]ertain decisions are momentous in their impact on the character of a person's life — decisions about religious faith, political and moral allegiance, marriage, procreation, and death, for example. Such deeply personal decisions pose controversial questions about how and why human life has value. In a free society, individuals must be allowed to make those decisions for themselves, out of their own faith, conscience, and convictions... Most of us see death - whatever we think will follow it — as the final act of life's drama, and we want that last act to reflect our own convictions, those we have tried to live by, not the convictions of others forced on us in our most vulnerable moment..."797 As Pedain evaluates the case, Mrs Pretty's possibility to take her own life came to represent her freedom as a human being. It was the only area of conduct in which she still saw a possibility to shape her own life in a meaningful way in the light of her personal circumstances. What could amount to self-determination for a person in her situation was to make 795

796 797

D. Orentlicher "The Alleged Distinction between euthanasia and the withdrawal of life-sustaining treatment: conceptually incoherent and impossible to maintain" (1998) University of Illinois Law Review 837 at 848. R. Dworkin 1994. Ronald Dworkin, Thomas NageL Robert Nozick, John Rawls, Thomas Scanlon and Judith Jarvis Thomson Amici Curiae Brief for Respondents in Washington v Glucksberg 117 S Ct 2258 (1997) and Vacco Quill 117 S Ct 2293 (1997) Cited in E. Jackson 2006 at p. 941.

38

The Right to Bodily Integrity

200

a choice about the manner and time of her own death.798 This is why that choice became for her the epitome of personal autonomy. The Court is criticised for contrasting the case with Dudgeon in that the margin of appreciation was narrow where an intimate area of a person's sex life is concerned. As Pedain puts it: [apparently the Court considers suicide a rather peripheral aspect of individual self-determination when compared to such matters as the ability to live one's sexual preferences.799

In her view, what is required for the purposes of applying Article 8(2) is a realisation that the burden imposed on personal freedom is not absolute but relative to the factors which determine the impact of a restriction on certain types of individuals. The weight of the restriction is a function of the scope of activity open to a person to live out their personal autonomy. So dying is central to persons close to death and is not made any less so because it is marginal for the young, the middle-aged and the healthy.800 The reason why we respect her choice, says Pedain is not that it is the right choice, but that it is her choice. Whilst that might be the case, caution does need to be exercised in such sensitive situations where there is a risk of exploitation of the vulnerable, and human rights law does have a role to play in this.801 The self-determination arguments presented in this book mean that individual choice does need to avoid becoming an untrammelled freedom to all to do whatever they want. Ideas of dignity as constraint appear evident in the judgment, as they do in Laskey discussed in chapter seven, with a sense of permitted free choice only up to a point. The moral framework of the good means that her choice was not allowed. In terms of the applicant's Article 14 claim, she alleged discrimination on the basis of her disability as she was unable to commit suicide due to her illness. The Court held that there was objective and reasonable justification for not distinguishing in law between those who are and who are not physically capable of committing suicide, pointing to the

798 799 800 801

See discussion by A. Pedain 2003 at pp. 193-7. A. Pedain 2003 at p. 193. All in A. Pedain 2003. J. Montgomery 2006.

The Right to Bodily Integrity Bodily and Moral Integrity Rights

39 201

protection of the vulnerable arguments already employed in considering Article 8(2).

Conclusions As we have seen, the case law concerning bodily and moral integrity rights covers a great deal of substantive areas of law: physical abuse, including unwanted intrusions and unauthorised disclosure of private information, sexual and other assaults and rape by government officials and private actors, the treatment of the disabled, medical interventions against one's will, mental health, abortion, and aspects of dying. The Court has been keen to stress personal integrity's fundamental nature to the right to respect for one's private life protected under Article 8 which in many ways has provided a fall back position when the level of severity of the treatment does not reach that required for Article 3 to be violated. Most of the case law supports a view of personal integrity, both bodily and moral, which connects to self-determining freedom to live a life of one's own choosing.

References Table of Cases European Commission and European Court of Human Rights Cases

A v the L^TJudgment 23 September 1998, Reports of Judgments and Decisions 1988-VI, p. 2699 n. 694 Abdulsamet Yamen v Turkey Application no. 32446/96 Judgment 2 November 2004 p. 172 Akkoc v Turkey (2002) 34 EHRR 51 p. 172 Algur v Turkey Application no. 32574/96 Judgment 22 October 2002 p. 172 Aydin v Turkey (1997) 25 EHRR 251 p. 172 Bensaid v the UK Application no. 44599/98, Judgment 6 February 2001, 33 EHRR 10 n. 513, n. 527, p. 185 Boso v Italy Application no. 50490/99, Judgment 5 September 2002 p. 189 Botta v Italy (1996) 26 EHRR 241 n. 168, p. 180 Costello-Roberts v the UK 25 March 1993 19 EHRR 112 p. 171

40

The Right to Bodily Integrity References

Devrim Turan v Turkey Application no. 879/02 Judgment 2 March 2006 p. 173 Evans v the UK Application no. 6339/05, Judgment 7 March 2006 n. 761 Glass v the UK Application no. 61827/00, Judgment 9 March 2004 n. 1, p. 179 Hercz v Norway Application no. 17004/90 p. 188 Herczegfalvy v Austria (1992) 15 EHRR 437 p. 181, 184 Hurtado v Switzerland (1994) Series A No. 280 p. 184 Ilhan v Turkey Application no 22277/93 27 June 2000 34 EHRR 36 n. 765 Iwanczuk v Poland Application no. 25196/94 Judgment 15 November 2001 p. 175 Jobori v Turkey Application no. 40035/98 Judgment 11 July 2000 p. 172 M.C v Bulgaria 4 December 2003, 40 EHRR 20 n. 649, p. 175-177 Nitecki v Poland Application no. 65653/01 Judgment 21 March 2002 n. 1 Odievre v France Application no. 42326/98, Judgment 13 February 2003 n. 1, n. 153, p. 123, p. 127-132, p. 193-7, p. 204 Osman v the UK Application no. 87/1997/871/1083 Judgment 28 October 1998 29 EHRR 245 n. 167, n. 696 Paton v the UK (1980) 3 EHRR 408 p. 188 Peck v the UK Application no. 44647/98 Judgment 28 January 2003 n. 662 Pentiacova v Moldova Application no. 14462/03 n. 1 Pretty v the UK (2002) 35 EHRR 1 n. 1, n. 216, n. 299, n. 315, n. 527, n. 706, p. 197-200, 203 Price v the UK Application no. 33394/96 Judgment 10 July 2001 p. 179 Reyntjiens (Filip) v Belgium Application no. 16810/90 (1992) 73 Decisions & Reports 136 n. 664 Ribitsch v Austria 4 December 1995 Series A No. 336 p. 182 Selmouni v France (2000) 29 EHRR 403 p. 38, p. 183 Sentges v the Netherlands Application no. 27677/02 Judgment 8 July 2003 n. 1 S.W v the UK22 November 1995 Series A No. 335-B p. 173 Tysiac v Poland Application no. 5410/03 Judgment 20 March 2007 n. 1, n. 166, p. 72, p. 79-80, n. 617, p. 191-193 Valosinos v Lithuania Application no. 44558/98 Judgment 24 July 2001 p. 174-5 Vo v France Application no. 53924/00 Judgment 8 July 2004 p. 184, p. 189-191

The Right to Bodily Integrity Bibliography

Wainwright v the UK Application no. 12350/04 Judgment 26 September 2006 p. 174 Warwick v the UK (1986) 60 Decisions & Reports 5 p. 184 X v Austria Application no. 8278/78, 18 Decisions & Reports 154 p. 181 X v Commission of the European Communities [1994] ECR i-4737 n. 716 Xv Denmark (1988) 32 Decisions & Reports 282 p. 183 Xv the Netherlands 16 Decisions & Reports 184 n. 715 Xv the [/# Application no. 9702/82 (1983) 30 Decisions & Reports 239 p. 170 XandYv the Netherlands (1985) 8 EHRR 235 n. 165, p. 175, n. 706 YF v Turkey (2004) 39 EHRR 34 p. 173, n. 706 Z v Finland (1998) 25 EHRR 371 p. 169-170 Z and others v the UK Application no. 29392/95 GC ECHR 2001-V n. 694

International Cases Anay Beatriz and Celia Gonzales Perez v Mexico, Report No. 53/01 Case 11.565 n. 672 AS. v Sweden Communication no. 149/1999, UN Doc CAT/C/25/D/149/1999 (2001) n. 676 Mejia Egocheaga v Peru (Case 10.970; Report 5/96, 1996) (1997) 1 Butterworths Human Rights Cases 229 n. 672 Prosecutor v Furundzija IT-95-17/1-A, 21 July 2000 n. 693 Prosecutor v Kunarac IT-96-23-T and IT-96-23/1-T, 22 February 2001 n. 693 X and Yv Argentina I-ACHR Rep. 38/96 Case 10.506 Annual Report of the I-ACHR n. 681

UK Cases Evans vAmicus Healthcare [2007] EWCA Civ 727 p. 186 St George's NHS Trust v S [1999] Fam 26 p. 183

Bibliography Abi-Mershed, E. "The Inter-American Commission on Human Rights: Prospects for the Inter-American Human Rights System to Protect and Promote the Human Rights of Women" in K.D. Askin and D.M. Koenig (eds) Women and International Human Rights Law (Transnational Publishers Inc: Ardsley, NY 2000) Vol 2 at pp. 417-442 at pp. 432-3.

41

42

The Right to Bodily Integrity Bibliography Avineri, S. and De-Shalit A. (eds) Communitarianism and Individualism (Oxford: Oxford Barber, N.W. "A Right to Privacy?" in K. Ziegler (ed) 2007 67-77. Beyleveld, D. "Conceptualising Privacy in Relation to Medical Research Values" in S. MacLean (ed) First Do No Harm: Law, Ethics and Healthcare Aldershot: Ashgate 2006) chapter 10. Bonnet, C. Gesture of Love (Paris Editions Odile Jacob 1991). Center for Reproductive Rights "Reproductive Rights in the European Court of Human Rights" available at http://www.reproductiverights.org. Cohen, J.L. "Rethinking Privacy: Autonomy, Identity and the Abortion Contoversy" in S.I. Benn and G.F. Gaus (eds) Public and Private in Social Life (London: Croom Helm 1983). Cook, R.J., Dickens, B.M., Wilson, O.A.F. and Scarrow, S.E. Advancing Safe Motherhood through Human Rights (World Health Organization 2001). Cornell, D. The Imaginary Domain: Abortion, Pornography and Sexual Harassment (New York and London: Routledge 1995). Dworkin, R. Law's Empire (London: Fontana Press 1986). Dworkin, R. Life's Dominion: an argument about abortion, euthanasia, and individual freedom (New York: Vintage Books 1994). Etzioni, A. (ed) The Essential Communitarian Reader (Oxford: Rowman and Littlefield 1988). Fabre, C. Whose Body Is It Anyway?: Justice and the Integrity of the Person (Oxford: Oxford University Press 2006). Feldman, D. Civil Liberties and Human Rights in England and Wales (2nd Edn Oxford: Oxford University Press 2002). Feldman, D. "The Developing Scope of Article 8 of the European Convention on Human Rights" (1997) European Human Rights Law Review 265-274. Feldman, D. "Human Dignity as a Legal Value - Part I" (1999) Public Law 682. Fenwick, H. Civil Liberties and Human Rights (London 3rd Edn: Cavendish Publishing Ltd 2002). Freedland, "Privacy, Employment and the Human Rights Act 1998" in K. Ziegler (ed) 2007 141-156. Gilligan, C. In a Different Voice: Psychological Theory and Women s Development (London: Harvard University Press 1982). Griffiths, M. Feminisms and the Self: The Web of Identity (London: Routledge 1995). Guignon, C. On Being Authentic (London: Routledge 2004). Hewson, B. "Dancing on the Head of a pin? Foetal Life and the European Convention" (2005) 13 Feminist Legal Studies 363-375. Hirschmann, NJ. The Subject of Liberty: Toward a Feminist Theory of Freedom (Oxford: Princeton University Press 2003). Ignatieff, M. Human Rights: as politics and idolatry (Princeton: Princeton University Press 2001). Jackson, E. Regulating Reproduction: Law, Technology and Autonomy (Oxford: Hart 2001). Jackson, E. Medical Law: Texts and Materials (Oxford: Oxford University Press 2006) Lefaucheur, N. (2000) Etude-Enfants nes sous X Paris CNRS - IRESCO. Lester, A. and K. Best, "Risking Torture" (2005) 5 EHRLR 565-571. Loucaides, L. "Personality and Privacy under the European Convention of Human Rights" (1990) 61 British Yearbook of International Law 175.

The Right to Bodily Integrity Bibliography Maclean, A.R. "A Crossing of the Rubicon on the Human Rights Ferry" (2001) 64 Modern Law Review 775-794. Marshall, J. Humanity, Freedom and Feminism (Aldershot: Ashgate, Applied Legal Philosophy Series 2005). Medical Research Council: Personal Information in Medical Research 9 October 2000 available at www.mrc.ac.uk/utilities/documentrecord/index.htm?d=MRC002452. Montgomery, J. "Law and the demoralisation of medicine" (2006) 26 Legal Studies 185-210. Moreham, N.A. "Violating Article 8" (2007) Cambridge Law Journal 35-37. O'Donovan, K. (2000) 'Enfants Trouves, Anonymous Mothers and Children's Identity Rights', in O'Donovan, K. and Rubin, G. (eds), Human Rights and Legal History, Oxford: Oxford University Press (2000a). O'Donovan, K. (2002) ' "Real" mothers for abandoned children' 36 Law and Society Review 347-78. O'Donovan, K. "Taking a Neutral Stance on the Legal Protection of the Fetus: Vo v France" (2006) 14 Medical Law Review 115-123. O'Donovan, K. and Marshall, J. "After Birth: Decisions about Becoming a Mother" in A. Diduck and K. O'Donovan (eds) Feminist Perspectives on Family Law (London: Cavendish Publishing 2006) pp. 101-122. Orentlicher, D. "The Alleged Distinction between euthanasia and the withdrawal of life-sustaining treatment: conceptually incoherent and impossible to maintain" (1998) University of Illinois Law Review 837 at 848. Pedain, A. "The Human Rights Dimension of the Diane Pretty Case" (2003) 62 Cambridge Law Journal 181-206. Pitea, "Rape as a Human Rights Violation and a Criminal Offence: The European Court's Judgment in MC v Bulgaria (2005) 3 Journal of International Criminal Justice 447_462. Reece, H. Divorcing Responsibly (Oxford: Hart 2003). Regan, T. Matters of Life and Death (London: Random House 1986). Rich, A. (1976) Of Woman Born, London: Virago. Romany, C. "State Responsibility Goes Private: A Feminist Critique of the Public/Private Distinction in International Human Rights Law" in R. Cook (ed) Human Rights of Women: National and International Perspectives (Philadelphia: University of Pennsylvania Press 1994) at pp. 85-115. Sandel, M. Liberalism and the Limits of Justice, Cambridge: Cambridge University Press 1982/1998). Scott, R. Rights, Duties and the Body: Law and Ethics of the Maternal-Fetal Conflict (Oxford: Hart 2002). Sheldon, S. Beyond Control: Medical Power, Women and Abortion Law (London: Pluto Press 1997). Taylor, C. "Atomism" in S. Avineri and A. De-Shalit (ed) Communitarianism and Individualism (Oxford: Oxford University Press 1992). Treiger-Bar-Am, L.K. and M. Spence, "Private Control/Public Speech" in K. Ziegler (ed) 2007 pp. 177-187. West, R. (1988) 'Jurisprudence and Gender' 55 University of Chicago Law Review 1. Wicks, E. Human Rights and Healthcare (Oxford: Hart 2007). Ziegler, K.S. "The Princess and the Press: Privacy after Caroline von Hannover v Germany" in Ziegler (ed) 2007 pp. 189-208.

43

This page intentionally left blank

[2] MY BODY, YOUR BODY, OUR BODIES JONATHAN HERRING AND P.-L. CHAU* I. INTRODUCTION Is your body yours? This may seem a strange question to ask, eliciting the immediate response, 'of course it is; who else's could it be?'1 Although there has been much debate among lawyers and philosophers about whether bodies are property, and whether people can be said to own their bodies, there is a widespread assumption that your body is yours. It is that assumption which we wish to challenge in this article. For lawyers, the exact relationship people have with their bodies has raised a host of complex questions. Generally, commentators have divided into one of three camps.2 There are those who argue that bodies should be regarded as property, capable of being owned3 and transferred; those who reject the property approach and instead argue that rights such as 'rights to bodily integrity', 'rights to privacy' or 'rights to autonomy' should be used to protect the body's special status and a third group who believe that there is something to be said for both views, and the ideal solution lies in finding the appropriate mix of both the property and integrity/privacy approaches. The significance of this dispute can be seen in the context of various legal issues: if a fan cuts off a piece of his favourite actor's hair, should this be regarded as theft, or an offence against the person, or both?4 When considering * Fellow in Law, Exeter College, University of Oxford, UK and Charge de Recherches, Bioinformatique Structurale, Pasteur Institute, France, respectively. The authors are very grateful to Rohan Hardcastle, Andrew Hardwick, Stephen Gilmore and two anonymous reviewers who have provided comments on drafting this article. The normal caveats apply. 1 J. Harris, 'Who Owns my Body?' (1996) 16 O.J.L.S. 55. 2 For a discussion of the different views, see G.T. Laurie and J.K. Mason, 'Consent or Property? Dealing with the Body and its Parts in the Shadow of Bristol and Alder Hey' (2001) 64 Medical Law Review 10; G. Calabresi, 'An Introduction to Legal Thought: Four Approaches to Law and to the Allocation of Body Parts' (2003) 55 Stanford Law Review 2113; S. Suter, 'Disentangling Privacy From Property: Toward a Deeper Understanding of Genetic Privacy' (2004) 72 George Washington Law Review 737. 3 E.g. B. Bjorkman and S.O. Hansson, 'Bodily Rights and Property Rights' (2006) 32 Journal of Medical Ethics 209. 4 Director of Public Prosecutions v. Smith [2006] E.W.H.C. 94 (Admin).

46

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

35

the issue of live organ donation, are organs to be treated as property which can be bought or sold like any other thing, or does the unique status of the human body mean that it should not be commercialised by treating it as property? Who should have control over organs and parts of bodies when they have been removed from a person or cadaver?5 If an individual's DNA structure is used by scientists to create a valuable commodity, in what sense, if any, should that individual be able to claim ownership of it? Should confidential medical information about someone be regarded as property, or should it be protected through a right of privacy?6 Philosophers too, have long debated whether our bodies should be seen as us, or part of us;7 in other words, whether our essential being is our minds which inhabit a body or whether our bodies are central to our identity. Are our bodies tools to be used by us for our own ends, or are our bodies part of the essence of who we are? What lies at the centre of these debates is an assumption that our bodies are ours. The debate is over the way it is appropriate to describe that sense of 'oursness' in legal or philosophical terms. At the heart of our challenge to this assumption are three claims. The first is that our bodies are interconnected with, and interdependent on, other bodies. Second, our bodies are constantly interacting with the world around us. Their survival, meaning and sustenance depend on the wider environment. Third, our bodies are not static organisms, they are constantly changing and mutating. These points lead us to conclude that to say 'my body is mine' is only a part of the picture. Our bodies are not just ours. Before developing these points it would be useful to summarise the way in which the dispute over the nature of the body has been conducted in most of the legal literature.

II. THE LAW: BODIES AS PROPERTY There has been much academic discussion about whether it can be said that the law recognises our bodies as property which we own.8 Gage J recently accepted that English law was uncertain and unclear.9 The 5 6 7 8

9

Moore v. Regents of the University of California 793 P 2d 479 (Cal. 1990). G.T. Laurie, Genetic Privacy: A Challenge to Medico-Legal Norms (Cambridge University Press 2002). For a useful introduction to the issues see M. Proudfoot, Philosophy of Body (Blackwell 2003). G. Dworkin and I. Kennedy, 'Human Tissue: Rights in the Body and its Parts' [1993] 1 Medical Law Review 29; P. Matthew, The Man of Property' [1995] 3 Medical Law Review 251. AB v. Leeds Teaching Hospital NHS Trust [2005] Q.B. 506, at para 135.

The Right to Bodily Integrity

36

MEDICAL LAW REVIEW

47

[2007]

safest thing that can be said is that there are some respects in which the body can be treated as property, and other respects in which it cannot. The traditional rule has been that the human body cannot be property. This has been understood to represent the common law.10 Explicit authority for the proposition is, in fact, limited.11 The law appears less reluctant to find that separated body parts or products are property. Hair,12 blood13 and urine14 have all been found to be property for the purposes of the Theft Act 1968. By contrast, damage to hair has also been treated as an assault occasioning actual bodily harm, that is an offence against the person rather than a property offence.15 In Kelly,16 the Court of Appeal held that ... parts of a corpse are capable of being property ... if they have acquired different attributes by virtue of the application of skill, such as dissection or preservation techniques, for exhibition or teaching purposes. Although the court did not say so explicitly, presumably the person who applied the skill was the person who became owner. The Court of Appeal went further and suggested that if body parts attracted a 'use or significance beyond their mere existence,17 they could become property. Examples given by Rose LJ included an organ intended for use in a transplant operation or bodily material removed as an exhibit for a trial.18 In Kelly itself, the body parts had been preserved and used as anatomical specimens and hence were held to amount to property. It might also explain why drivers who removed their blood or urine samples taken by the police to test alcohol levels could be convicted of theft.19 The courts are yet to explain why it is that when an item acquires significance it becomes property, and who is owner at that point.

10 11 12 13 14 15 16 17 18 19

Doodewardv. Spence (1908) 6 C.L.R. 906, confirmed recently in AB v. Leeds Teaching Hospital NHS Trust supra, n. 9. See R. Magnusson, 'Proprietary Rights in Human Tissue' in N. Palmer and E. McKendrick (eds.) Interests in Goods (Lloyds of London Press 1998). R v. Herbert (1961) 25 J.C.L. 163. R v. Rothery [1976] R.T.R. 550. R v. Welsh [1974] R.T.R. 478. Director of Public Prosecutions v. Smith, supra n. 4. [1998] 3 All E.R. 714 at 749. Ibid. For further discussion of the possible impact of this decision see A Grubb, 'I, me, mine: Bodies, parts and property' (1998) Medical Law International 299. R v. Rothery, supra n. 13; R v. Welsh, supra n. 14.

48

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

37

In Dobson v. Northern Tyneside Health Authority20 reliance was placed on the view in Doodeward v. Spencer21 where Griffith CJ stated: ... when a person has by lawful exercise of work or skill so dealt with a human body or part of a human body in his lawful possession that it has acquired some attributes differentiating it from a mere corpse awaiting burial, he acquires a right to retain possession of it, at least as against any person not entitled to have it delivered to him for the purposes of burial. These cases leave undecided what must be done to a part of a body in order for it to acquire the nature of property. The exercise of skill in dissection or preservation may well be sufficient.22 Similarly, there is a rather uneasy legal situation in respect of corpses. The executor of the deceased's estate, or a hospital, can claim lawful possession of a corpse, even though it cannot be owned.23 In AB v. Leeds Teaching Hospital NHS Trust24 the parents could not claim any kind of property rights to material removed from their children in the course of a post-mortem examination.25 Although, Gage J made it clear that it might have been different if the parents had requested the return of an organ when consenting to a post-mortem.26 Brazier expresses her views on the law thus: The deceased did not own their body and could not bequeath it to their estate. The estate can claim the body for decent disposal, although not necessarily disposal as the deceased would have wished. Parts are taken from the body without either the deceased's or their family's approval. Put to the uses of medicine, these body parts become, as if by magic, property, but property owned by persons unknown, for purposes unforeseen by the deceased. If that represents the law, the law is an ass.27

20 21 22

23

24 25 26 27

[1996] 4 All ER 474. (1908) 6 C.L.R. 406 at 414. AB v. Leeds Teaching Hospital NHS Trust, supra n. 9. However, in Dobson v. North Tyneside supra n. 20 at 479 Peter Gibson L.J. stated that 'mere preservation' would not be sufficient to render the brain property. Dobson v. Northern Tyneside Health Authority, supra n. 20 at 478. For further discussion see L. Skene, 'Proprietary Rights in Human Bodies, Body Parts and Tissue' (2002) 22 Legal Studies 102. Supra, n. 9. AB v. Leeds Teaching Hospital NHS Trust, supra n. 9. Ibid at para. 161. M. Brazier 'Retained Organs: Ethics and Humanity' (2002) 22 Legal Studies 550 at 563. See Lewisham Hospital NHS Trust v. Hamuth 6- Ors Ch D 23/1/2006 (unreported) for further uncertainties over who has control or ownership of corpses.

The Right to Bodily Integrity

38

MEDICAL LAW REVIEW

49

[2007]

It also remains to be seen whether or not the case-law indicating that a part of the body can become property if it is subject to the exercise of work or skill, applies to whole bodies. Presumably it does. It would be difficult to explain why skilful preservation of a part of a body turns it into property, while that is not so if the same thing is done to a whole corpse. After all, it would be surprising if Gunther von Hagens' plastinated corpses could not be property.28 Few would claim that the current law on whether and when the body or its parts can be owned is satisfactory. It is clear that parts of the body and indeed corpses can be property in some circumstances and for some purposes. Complete bodies of living people, it appears, cannot be property.29 But it is difficult to make a more authoritative statement than that about the English law. III. THE LAW ON INTEGRITY RIGHTS AND THE BODY The law protects individuals' rights to their bodies. The criminal law, through the laws governing offences against the person and sexual offences, protects an individual's right to bodily integrity: the principle that a person may not be touched without their consent. For example, a doctor is not permitted to operate on a competent pregnant woman without her consent even in order to save her life, or that of her fetus.30 However, the position in relation to removed parts of the body is less straightforward. The law has traditionally regarded an interference with a removed part of the body as a theft, if anything at all, rather than an offence against the person.31 In other words, the rights claimed are ones connected to a property model, rather than ones based on a right to bodily ownership or autonomy. The uncertain position of the body in the law is reflected in the Human Tissue Act 2004.32 The Act does not directly address the question of whether a person owns bodily material once it has been removed. The Act's regulation of the use of bodily material focuses on the requirement for consent, rather than the granting (or affirming) of property rights in removed material. This might be said to indicate that the Act adopts an integrity/privacy approach. Section 32(9) refers 28 29

30 31 32

We are grateful to an anonymous reviewer for this point. The Court of Appeal in Dobson v. North Tyneside Health Authority supra n. 20 obiter accepted that the general approach of the common law was that a body was a res nullius and therefore incapable of being property. St George's NHS Service Trust v. S [1999] Fam. 26, C.A. 728. See the cases at n. 12-14. K. Liddell and A. Hall, 'Beyond Bristol and Alder Hey: The Future Regulation of Human Tissue' [2005] Medical Law Review 170.

50

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

39

to human material which has become property by the application of human skill and states that such material is not covered by the offence relating to commercial dealings in bodily material intended for transplantation. Unfortunately, it fails to give guidance as to whether human material can become property by other means and, if so, who owns it. This is particularly disappointing given that the Act is intended to provide a comprehensive framework for issues relating to the use and storage of bodily material. Pattinson has argued that s. 32(9): ... clearly provides statutory support for the claim that human material can be property where human skill has been applied to it (e.g. the Dobson-Kelly position). Material that is property by virtue of the application of human skill is excluded from the offence relating to commercial dealings. Expressed in this way, it should be clear that the Act need not be taken to prevent human material being property by virtue of some other reasons; it merely does not exclude human material that is property for other reasons form the prohibition on commercial dealings.33 While this is true as a matter of literal interpretation, it is hard to conceive of a reason why human material which was property by virtue of the application of skill, could be dealt with commercially, but human material which was property for some other reason, could not be. Normally, the law draws no distinction between the precise way in which an item acquired property status. The more natural reading is that Parliament was indicating that the application of human skill is the only way a body can become property. As Price has argued, the failure of the Act to identify precisely if and when bodily material can be property causes a difficulty which goes to the heart of the legislation.34 Although Parliament, through the Human Tissue Act 2004, intended to reinforce the notion that we have a right to control the use of our bodily materials, it is far from clear what the source of that right is. In particular, whether it comes from a property approach or an integrity/privacy rights-based approach. Price concludes: It would appear that the legislature ultimately moored the statutory framework in the 2004 Act to a rationale principally based upon the infringement of personal integrity i.e. to the validity of the consent governing removal of the tissue (further uses are implicitly 33 34

S. Pattinson, Medical Law and Ethics (Sweet and Maxwell 2006) at p. 473. D. Price, The Human Tissue Act 2004' (2005) 68 Modem Law Review 798.

The Right to Bodily Integrity

40

MEDICAL LAW REVIEW

51

[2007]

consented to, i.e. they are 'part of the deal' in receiving medical treatment). Arguably, however, it is philosophically grounded in property rights and interests even despite the modifications to the Bill obviating the need for consent, but which in any event only apply to non-identifiable tissue as regards research.35 IV. DISPUTES OVER THE APPROACHES It is not possible here to do justice to the rich material advocating either a property approach or an integrity/privacy-based approach. Some of the key issues will be briefly mentioned.36 The word 'property' is used to describe not only a thing, but also a relationship between a person and a thing. So a book is a piece of property, but to say the book is 'my property' is to describe a structure of legal rights and obligations between me and my book. When a person owns a piece of property, that usually denotes a number of rights or entitlements, e.g. the right to use or enjoy the property, the right to exclude others from using the property and the right to sell or transfer the property to someone else.37 'Full-blooded ownership' involves possession of all of these rights. But a lesser form of ownership may involve only some of them. Seeing a body as a piece of property enables not only control over what is done with the body while it is part of the individual, but, more significantly, rights over the piece of property once it is removed from the person.38 The notion of property also carries with it the right to deal with one's property as one wishes, and this may be regarded as attractive to those keen to promote a liberal view of what one is entitled to do with one's own body. An integrity/privacy approach focuses on the right to dignity, which is closely connected to the right to autonomy and the right to bodily integrity. At its heart, is the notion that we have a fundamental right to control what happens to our bodies; who touches them, when and how. Central then is the notion of consent; there should be no touching or interference with our bodies without our consent. Control over our 35 36

37 38

Ibid, at 816-817. For more detailed discussions, see G.T. Laurie, supra n. 6; S. Munzer, A Theory of Property (Cambridge University Press 1990); R. Rao, 'Property, Privacy, and the Human Body' (2000) 80 Buffalo University Law Review 359; M. Shildrick, Leaky Bodies and Boundaries: Feminism, Postmodernism and (Bio)ethics (Routledge 1997); W. Boulier, 'Sperm, Spleens and Other Valuables: The Need to Recognize Property Rights in Human Body Parts' (1995) 23 Hofstra Law Review 693. J. Harris, supra, n. 1 at 59. J.K. Mason and G.T. Laurie, 'Consent or Property? Dealing with the Body and its Parts in the Shadow of Bristol and Alder Hey' (2001) 64 Modern Law Review 711.

5

2

T

Med.L.Rev.

h

e Right t o Bodily Integrity

My Body, Your Body and Our Bodies

41

bodies is crucial for autonomy and our coherence as people.39 There is, however, a dispute over the role that dignity plays here.40 There are some who regard dignity as a restraint on how individuals deal with their bodies. Even though a person may have consented to take part in an activity, it may be outlawed because the activity violates the proper respect and dignity owed to the body. Such an argument is sometimes used to oppose the legality of selling one's organs. To others, however, dignity is about respecting the wishes of an individual over what she wishes to do with her body.41 To respect a person's dignity is to respect that person's decisions for his or her body. Why does it matter which of these approaches is adopted? As the following points make clear, this is not just a dispute over labels.

A. Control Over Removed Body Parts The main benefit claimed by the property model is that it enables individuals to retain control over parts of their bodies when they are removed. Integrity/privacy-based models may provide protection against a person's bodily part being removed against her wishes through its emphasis on the right to bodily integrity, but it provides no obvious rights over removed bodily material and no claim to any profits created through the use of it. Graeme Laurie puts the argument in this way: A personal property paradigm could, in fact, serve an all-important role in completing the picture of adequate protection for the personality in tandem with other protections such as autonomy, confidentiality and privacy. However, the added value of a property model lies in its ability to empower individuals and communities and to provide the crucial continuing control over samples or information through which ongoing moral and legal influence may be exerted.42 It may be that this criticism of a integrity/privacy-based model could be overcome by developing some kind of privacy right to control separated

39 40 41

42

L. Andrews and D. Nelkin, Body Bazaar: The Market for Human Tissue in the Biotechnology Age (Crown 2001) at 13. D. Beyleveld and R. Brownsword, Human Dignity in Bioethics and Biolaw (Oxford University Press 2001), ch. 1. J. Savulescu, 'Is the Sale of Body Parts Wrong?' (2003) 29 Journal of Medical Ethics 138. Medical Research Council, Public Perceptions of the Collection of Human Biological Samples, (Medical Research Council 2000) found amongst the general public no repulsion at the notion of payment for bodily samples, at least among younger people. G.T. Laurie, supra, n. 6 at 316.

The Right to Bodily Integrity

42

MEDICAL LAW REVIEW

53

[2007]

body parts, but such a right would not be directly analogous to privacy rights as recognised in the law to date.

B. Dignity To some supporters of an integrity/privacy-based model, it is disrespectful to treat the body akin to property which can be traded.43 Can it be right to suggest that the legal relationship we have with our televisions should be the same in the eyes of the law to that we have with our bodies? To regard the body as property is demeaning and degrading to the body.44 It is too close to slavery.45 There are some things that are too precious to be owned. Gage J, in a case about whether pathologists legally wronged parents by retaining parts of their children's bodies after post-mortems, noted that it appeared 'inappropriate' that the case had to be discussed in terms of who owned the dead children's bodies.46 The principles that should govern human bodies are consent, dignity and respect.47 These values are not captured by the property model, integrity/ privacy-based approach supporters argue.48 Radhika Rao,49 preferring an autonomy-based approach as the way of protecting the body, argues that property rights are useful for protecting market values, but that privacy rights are appropriate for spiritual values. Our bodies are not just property; they are the medium through which we interact with the world. Our relationship with our bodies is not one of 'having' but rather 'existing'.50 Such values are better protected by privacy rights than property rights. One response to these powerful arguments is that, however high minded, they are out of touch with reality. Bodies are commercialised

43 44

45

46 47 48 49 50

L. Skene, * Arguments Against People Legally "Owning" Their Own Bodies, Boy Parts and Tissue' (2002) 2 Macquarie Law Journal 165. S. Munzer, 'An Uneasy Case Against Property Rights in Body Parts' in E. Paul, F. Miller, J. Paul (eds.) Property Rights (Cambridge University Press 1994). The argument is also considered in A. Ryan, 'Self-Ownership, Autonomy and Property Rights' (1994) 11 Social Philosophy and Politics 241. G.T. Laurie, (Intellectual) Property? Let's Think About Staking a Claim to Our Own Genetic Samples (AHRC Research Centre for Studies in Intellectual Property and Technology Law 2002). AB v. Leeds Teaching Hospital NHS Trust supra n. 9 at para. 134. M. Brazier, Medicine, Patients and the Law (Penguin, 2003) at 479. See the discussion in R. Brownsword, 'An Interest in Human Dignity as the Basis for Genomic Torts' (2003) 42 Washburn Law Journal 413. R. Rao, 'Property, Privacy, and the Human Body' (2000) 80 Buffalo University Law Review 359. S. Toombs, 'What Does It Meant to Be Somebody' in M. Cherry (ed.) Persons and Their Bodies (Kluwer 1999).

54

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

43

whether we like it or not. In the Western world, Biotech scientists and their employers make large sums of money through research on parts of bodies. Why should they make all the gains from the body parts and not the people from whom the samples originated?51 The sale of bodily material such as hair and sperm is socially acceptable.52 Moreover, many items of property carry value beyond the material wealth they represent: consider wedding rings, for example. As long as we do not regard property as the only way a body is valued, we should have few objections to bodies being seen this way. Indeed, it is possible to regard something as property even if there are restrictions on access to it, or restrictions on sale or use.53 For example, pets are owned, but there are criminal restrictions on how they can be treated, and their interests are protected while still being regarded as property.

C. Technical Problems with Ownership of Bodies To some there are technical difficulties in regarding the body as property.54 To constitute property, an item has to possess certain characteristics and be subject to certain kinds of treatment. As bodies are not transferable or divisible, we cannot treat them as property. Further, rights of property in law come about in a variety of accepted ways (e.g. the fruits of labour). None of these apply in relation to whole bodies: they are not something that we created ourselves or were transferred to us from another. So even though we may feel as if our bodies are our own, they cannot be regarded as property in the way that that term has been understood by property law.55 There may also be a logical problem in saying that we own ourselves. That is, there needs to be a clear separation between 'the owner' and 'the owned'. We can only say we own our bodies if we see a clear distinction between 'us' and 'our bodies'.56 This kind of reasoning leads some to 51 52

53 54 55 56

E. Gold, Body Parts: Ownership of Human Biological Material (Georgetown University Press 1996) at 37. See C.A. Erin and J. Harris, 'An Ethical Market in Human Organs' (2003) 29 Journal of Medical Ethics 137 for an argument that it is possible to create an ethically defensible market in organs. R. Brownsword, supra n. 48. J. Harris, Property and Justice (Oxford University Press 2002); M. Davies and N. Naffine, Are Persons Property? (Ashgate 2001). J. Harris, supra n. 1 at 59. N. Naffine, The Legal Structure of Self-Ownership: or the Self-Possessed Man and the Woman Possessed' (1998) 25 J.L.S. 193; D. Morgan, Issue in Medical Law and Ethics (Cavendish 2001) ch. 6.

The Right to Bodily Integrity

44

MEDICAL LAW REVIEW

55

[2007]

prefer seeing rights in respect of the body flowing from the right of privacy where an interference with the body is an interference with the self.57 Radhika Rao argues: Property produces a fragmented relationship between the body and its owner, the person 'inside' the body, in contrast with privacy, which creates an indivisible corporeal identity. By uncoupling the body from the person and undermining the unity of the physical being, the property paradigm facilitates fragmentation of the body itself, both literally and figuratively. Privacy theory, on the other hand, forecloses such bodily fragmentation by identifying the person with his or her physical presence. Hence, privacy shields the individual against corporeal invasion and alteration and preserves the unity and integrity of the embodied being.58 D. Positive Claims It is sometimes said that property rights are preferable to privacy rights, because they provide a positive set of claims for an individual over his or her body, while privacy rights are negative and focus on preventing people doing things to your body.59 While, therefore, privacy rights may be useful to prevent the non-consensual removal of bodily material, they would not provide a means to claim back the material. The problems arise particularly where the material has been passed on to a third party. While a property claim may succeed against a third party, the claims of a right of privacy or bodily integrity may only be effective against the remover. This claim, however, may depend on a particular notion of rights of autonomy or privacy. As can be seen from this discussion, there is no widespread agreement over whether a property approach or a dignity/privacy approach is preferable. Perhaps for many, it is difficult to strongly subscribe to either approach. Mason and Laurie encapsulate this ambivalence well: Property is a powerful control device for the bundle of rights that it confers. It also carries a particular message—one of the potential for commerce and trade; of market advantage and disadvantage. To recognise a 'quasi-property' claim to material is to support a 57

58 59

The extent to which it is possible to separate ourselves and our bodies has, of course, generated a vast amount of philosophical material. A useful collection is found in M. Cherry (ed.) Persons and Their Bodies (Kluwer 1999). R. Rao, supra n. 49 at 364. G.T. Laurie, supra n. 6 at 300.

56

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

45

normatively strong connection to that material and, accordingly, to establish a strong, justiciable legal interest; by the same token, these examples indicate that 'full' property rights will only be recognised where there is little or no prospect of exploitation or other harm, which can include the 'harm' of disrespect for the dignity of the human organism. We see, then, a wide-spread ambivalence about property in human material.60 We will now seek to argue that both of these models, based on dignity/ privacy rights or property, overlook a crucial fact about our bodies. Our bodies are not, in a straightforward sense, 'ours'. They are interdependent, interconnected and intermingling with other bodies. This argument will now be developed. V. THE INTERCONNECTION OF BODIES In what way are our bodies interconnected? It is not possible, of course, to provide here a complete list, but here are some examples: 1. Our bodies start in a relationship of connection in pregnancy. The state of interconnection between the fetus and mother is revealed in a number of ways. The mother and fetus share fluids and space. The health and well-being of the fetus can impact on the mother's well-being in both physical and psychological terms, and the reverse is also true. Consider, for example, the placenta. It demonstrates vividly the impossibility of treating bodies as entirely separate entities. At term, the human placenta weighs about half a kilogram61 and has an area of about 8-14m2 for exchange between mother and fetus.62 It is a complex and dynamic interface between embryonic and maternal tissue. Implantation of the embryo involves the trophoblastic tissue of the embryo entering maternal uterine tissue to reach the blood supply, in a manner not unlike the invasion of malignant tumours!63 The success of this process is important to both fetus and 60 61

62 63

J.K. Mason and G.T. Laurie, Mason & McCall Smith's Law and Medical Ethics (7th ed.) (Oxford University Press 2005) at 514-515. T. Beck, Tiacental Morphometry Using a Computer Assisted Measuring Programme: Reference Values for Normal Pregnancies at Term' (1991) 249 Archives ofGynecology and Obstetrics 135. Ibid. A.K. Voss, T. Thomas and P. Gruss, 'Mice Lacking HSP900 Fail to Develop a Placental Labyrinth' (2000) 127 Development 1; L.M. Montuenga et al., 'Expression of Adrenomedullin and Its Receptor During Embryogenesis Suggests Autocrine or Paracrine Modes of Action' (1997) 138 Endocrinology 440.

The Right to Bodily Integrity

46

MEDICAL LAW REVIEW

57

[2007]

woman: it is thought that pre-eclampsia and intra-uterine growth retardation result from inadequate invasion of the embryo trophoblast.64 Remarkably, the placenta keeps the blood of the woman and fetus separate, but enables the exchange of various materials. That happens as follows. By the beginning of the second month of fetal life, the trophoblast has already formed a large number of secondary and tertiary villi,65 in which run fetal blood. During the following months, the barrier between fetal and maternal blood in these villi are thinned to form the basis of exchange in the placenta. Gases such as Oi, and nutrients, can diffuse from maternal to fetal blood, while waste such as CO2 and urea can diffuse from fetal to maternal blood.66 The placenta, then, is a complex mix of maternal and embryonic tissue which it is not possible to describe as 'belonging' to either. Through it there is a constant exchange of maternal and fetal material. It is a prime example of bodily interchange which is the beginning of every single person. 2. Then there is the sharing of bloods during birth. There is no direct exchange of blood between the mother and the fetus during pregnancy. During delivery, this can sometimes occur, and is the cause of haemolytic anaemia of the newborn. This condition probably was first described in 1609.67 A red blood cell antigen (subsequently named the rhesus factor)68 was suggested to be the cause.69 The disease happens when there is antigenic incompatibility between mother and fetus. If an individual does not possess the rhesus antigen in their red blood cells, then that individual can make anti-rhesus antibodies. If an individual possesses the rhesus antigen on the red blood cells, then the individual almost never produce anti-rhesus antibodies. If a fetus has a rhesuspositive father and a rhesus-negative mother, it produces red blood cells with rhesus antigens. If, during delivery, some of the fetal blood 64 65 66 67

68

69

R. Pijnenborg, 'The Placental Bed' (1996) 15 Hypertension in Pregnancy 7. Tiny finger-like protuberances. M.K. Bauer et al., 'Fetal Growth and Placental Function' (1998) 140 Molecular and Cellular Endocrinology 115. L. Bourgeois, Observations Diuerses sur la Sterilite, Perte de Fruict, Fcecondite, Accouchements et Maladies des Femmes et Enfants Nouveaux Naiz (Henry Ruffin 1609), vol. 1, chs. 41 and 43 (Although first published in 1609 P-LC was only able to read the 1642 edition). K. Landsteiner and A. Wiener, 'An Agglutinable Factor in Human Blood Recognized by Immune Sera for Rhesus Blood' (1940) 43 Proceedings of the Society of Experimental Biology and Medicine 223. P. Levine and R. Stetson, 'An Unusual Case of Intra-group Agglutination' (1939) 113 Journal of the American Medical Association 126.

58

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

47

goes into the maternal circulation, the maternal immune system will produce anti-rhesus antibodies. When the mother is pregnant again with a rhesus-positive fetus, the anti-rhesus antibodies from the mother will cross the placenta and destroy the red blood cells of the fetus, thus causing anaemia.70 Here we can see the potential impact of the interaction between two bodies (the woman and newborn) producing a potentially harmful effect for a third (in the interaction between the woman and a subsequent child).71 3. Breast-feeding is another example of bodily interchange. It is widely regarded as beneficial to both mother and baby. Human milk contains a large number of constituents which are beneficial to the growth and development of the child.72 These include fat, protein, hormones, nucleotides, vitamins and minerals. The proteins consist of amino acids for growth and protective proteins such as immunoglobins.73 The milk is optimised for the growth and development of the baby, in that its constituents are changing constantly over time to match the needs of the growing infant at different stages of his/her development.74 In addition, the act of sucking during breastfeeding is not harmful to the dental development of the baby, as compared with bottle-feeding.75 This interchange of fluid from the mother to baby provides benefits both to the health of the mother and baby. In the case of the mother, studies have shown that there is probably a reduced risk of breast cancer,76 endometrial cancer77 and, to some extent, ovarian cancer.78 The many benefits claimed for breastfeeding (as compared 70 71 72

73 74 75 76

77

78

D. Nathan and S. Orkin, Hematology of Infancy and Childhood, 5th edn. (W.B. Saunders 1998) at 53-75. We thank Dr H.L. Tan for useful discussions on the points raised in this paragraph. Environmental pollutants have been found in human milk (C.M. Berlin, 'Conclusions, Research Needs and Recommendations of the Expert Panel: Technical Workshop on Human Milk Surveillance and Research for Environmental Chemical in the United States' (2002) 65 Journal of Toxicology and Environmental Health 1929). M. Picciano, 'Nutrient Composition of Human Milk' (2001) 48 Pediatric Clinics of North American 53. R.A. Lawrence and R.M. Lawrence, Breastfeeding: A Guide for the Medical Profession, 5th edn. (Mosby 1999). D. Viggiano, D. Fasano, G. Monaco, L. Strohmenger, 'Breast Feeding, Bottle Feeding and Non-nutritive Sucking' (2004) 89 Archives of Disease in Childhood 1121. J. Kelsey and E.M. John, 'Lactation and the Risk of Breast Cancer' (1994) 330 New England Journal of Medicine 136; T. Zheng et al., 'Lactation and Breast Cancer Risk: a Case-Control Study in Connecticut' (2001) 84 British Journal of Cancer 1472. K.A. Rosenblatt and D.B. Thomas, 'Prolonged lactation and endometrial cancer. WHO collaborative study of neoplasia and steroid contraceptives' (1995) 24 International Journal of Epidemiology 499. V. Siskind, A. Green, C. Bain and D. Purdie, 'Breastfeeding, Menopause and Epithelial Ovarian Cancer' (1997) 8 Epidemiology 188.

The Right to Bodily Integrity

48

MEDICAL LAW REVIEW

59

[2007]

to formula-feeding) for the baby include higher levels of cognitive function79 and IQ.80 4. Personal care. The bodies of carer and cared for are inter-dependent. For example, not only is a child dependent on their carer, but the carer becomes dependent on the child. If the child suffers an infectious childhood illness and is required to remain indoors, in effect this quarantine is imposed on the body of the carer too. If the child will not sleep, nor, in reality, will the parent. This is true not just in childparent relationships, but in any close relationship involving caring. If, for example, a carer breaks an arm, this has an impact on the person cared for, and of course vice versa. In a relationship involving dependence, an injury to the body of either the carer or the person cared for impacts significantly on the other's body. And this is not limited to physical issues. It is well known that attachment relationships in childhood have wide-ranging health implications.81 Recent work has shown that parents' psychiatric problems can adversely affect the physical and psychological well-being of the child after two years of age.82 The mental ill health of one person can affect the mental health of those they care for. 5. Bodies and the meaning of life. There is a wider sense too in which our bodies interconnect. Many of the things we most greatly value in life involve the sharing and interconnection of bodies: sex, sports, massage, shaking hands, to name but a few. It is in the meeting, intermingling and interaction of our bodies that many of life's most meaningful events occur. 6. Genetics. The more we know about the human genome, the more we realise how similar our bodies are. Even the difference between the human genome and the chimpanzee genome is only about 5%,83 so 79

80

81 82

83

J.W. Anderson, B.M. Johnstone and D.T. Remley, 'Breast-feeding and Cognitive Development: a Meta-analysis' (1999) 70 American Journal of Clinical Nutrition 525; N. Angelsen, T. Vik, G. Jacobsen and L. Bakketeig, 'Breast Feeding and Cognitive Development at Age 1 and 5 Years' (2001) 85 Archives of Disease in Childhood 183. L. Horwood, B. Darlow, N. Mogridge, 'Breast Milk Feeding and Cognitive Ability at 7-8 Years' (2001) 84 Archives of Diseases in Childhood—Fetal and Neonatal Edition F23-F27. J.A. Feeney, 'Implications of Attachment Style for Patterns of Health and Illness' (2000) 26 Child Care Health and Development 277. M. Mantymaa, K. Puura, I. Luoma, R.K. Salmelin, H. Davis, J. Tsiantis, V. IspanovicRadojkovic, A. Paradisiotou and T. Tamminen, 'Infant-Mother Interaction as a Predictor of Child's Chronic Health Problems' (2003) 29 Child Care Health and Development 181; M. Mantymaa, K. Puura, I. Luoma, R.K. Salmelin and T. Tamminen, 'Early Mother-Infant Interaction, Parental Mental Health and Symptoms of Behavioral and Emotional Problems in Toddlers' (2004) 27 Infant Behavior and Development 134. R J. Britten, 'Divergence Between Samples of Chimpanzee and Human DNA Sequences Is 5%, Counting Indels' (2002) 99 Proceedings of the National Academy of Sciences USA 13633.

60

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

49

the difference between genetic differences of individual humans is very small. Our shared participation in the common genetic pool emphasises our share identity. As Isabel Karpin puts it: The individual in the age of the gene is fundamentally connected and vulnerable. The individual in the age of the gene always contains a trace of the other; not-one but not-two.84 The difficulty is particularly acute where the genetic information about one individual reveals information about her wider family. Traditionally, medical information about a person can be regarded as private to them. The doctrine of medical confidentiality is based on the notion that no one apart from the patient can claim a right or legitimate interest in medical information about them. In the age of genetics, this is no longer true. Genetic medical information about me can also be the information about my parents, my children or even wider family.85 VI. THE INTERACTION WITH THE ENVIRONMENT Our bodies are also inter-connected with the wider world. Food coming from the earth is eaten, digested and removed as excreta or urine to be returned to the earth. The body inhales and exhales air. Bacteria in our bodies play crucial roles within the body and are constantly being replenished with new bacteria from outside. Most of our body surface is a micro-environment on which thrive many microbes, including bacteria, fungi and protozoa. It has been estimated that an average human is composed of 1013 cells, but there are 1014 microbial cells living on our surfaces.86 The great Oxford physiologist Haldane once remarked that the Archbishop of Canterbury is 65% water. One could add that he has more bacterial cells on his body than human cells, and the combined number of genes in these bacteria exceeds the total number of human genes by a factor of at least 100.87 One of the most important surfaces is the skin, which has an area of about 2 m2. The density of bacteria on the skin varies from about 84 85 86

87

I. Karpin, 'Genetics and the Legal Conception of Self in M. Shildrick and R. Mykitiuk (eds.) Ethics of the Body (MIT Press 2005). L. Skene, 'Patients' Rights or Family Responsibilities' [1998] Medical Law Review 1. H. Tlaskalova-Hogenova et al., 'Commensal Bacteria (Normal Microflora), Mucosal Immunity and Chronic Inflammatory and Autoimmune Diseases' (2004) 93 Immunology Letters 97. A.J. Macpherson and N.L. Harris, 'Interactions Between Commensal Intestinal Bacteria and the Immune System' (2004) 4 Nature Reviews Immunology 478.

The Right to Bodily Integrity

50

MEDICAL LAW REVIEW

61

[2007]

100 cm~2 to 107cm~2.88 There are at least 20 known species of such commensal bacteria.89 To protect the human from invasion by these microbes, the skin surface is protected mechanically by several epithelia layers and by its secretions. The commensal bacteria also protect the human by competing for nutrients, niches and receptors with the pathogenic bacteria. For example, Staphylococcus epidermidis bind keratinocyte receptors and reduce the adherence of virulent Staphylococcus aureus.90 Commensals also release species-specific antibiotic substances called bacteriocins, which kills pathogenic bacteria, e.g. S. aureus strain 502A releases bacteriocins that reduce the presence of virulent strains of S. aureus.91 The effect of commensal bacteria can also be indirect: bacteria can induce the host to increase antibody production, to increase phagocytosis and to increase cytokine production, etc. For example, Propionibacterium acnes releases fatty acid from lipid breakdown, acidifying the milieu and reducing the growth of Streptococcus pyogenes, a pathogenic bacterium.92 So these bacteria are essential to our bodies' survival; indeed to distinguish between 'them' and 'us' is complex, if not impossible. The other major surface of the body is the human gastrointestinal tract, which is colonised mainly by bacteria, but also by protozoa and fungi. The density of bacteria in the lower intestine is of the order of 1012 organisms per gram of intestine contents, with about 1000 species present.93 This is an example of mutualism: the bacteria benefit from a stable environment rich in energy source; some bacteria compounds such as short-chain fatty acids and vitamin Kl are used by the host metabolic machinery; and the commensal flora compete with invasive micro-organisms, thereby making it difficult for pathogenic bacteria to cause disease. To allow such commensal bacteria to survive, the gastrointestinal immune system has evolved to allow bacteria to grow inside the lumen of the intestine, but any bacteria 88 89 90

91

92 93

JJ. Leyden, KJ. McGinley, K.M. Nordstrom and G.F. Webster, 'Skin Microflora' (1987) 88 Journal of Investigative Dermatology 65s. D.N. Fredricks, 'Microbial Ecology of Human Skin in Health and Disease' (2001) 6 Journal of Investigative Dermatology Symposium Proceedings 167. DJ. Bibel, R. Aly, C. Bayles, W.G. Strauss, H.R. Shinefield and H.I. Maibach, 'Competition Adherence as a Mechanism of Bacterial Interference' (1983) 29 Canadian Journal of Microbiology 700. P.K. Petersen, J. Verhoef, L.D. Sabath and P.G. Quie, 'Extracellular and Bacterial Factors Influencing Staphylococcal Phagocytes and Killing by Human Polymorphonuclear Leukocytes' (1976) 14 Infection and Immunity 496. D J. Hentges, 'The Anaerobic Microflora of the Human Body' (1993) 16 Clinical Infectious Diseases 175. A.J. Macpherson and N.L. Harris, Supra n. 87.

62

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

51

crossing the boundary of the intestine will be intercepted.94 This delicate balance, however, is sometimes upset in disease.95 So, again, we see the interaction between bodies and the wider world is essential to human life. We also see how difficult it is to determine what can or cannot be said to constitute our bodies. VII. THE MUTABILITY OF OUR BODIES Our bodies are constantly changing. It is insufficiently appreciated that our bodies are not static organisms; far from it. They are giving to the world and receiving from it. Our bodies continually change with cells dying and falling off, and new cells being created. By the time we die, there is little of us that is biologically the same as when we were born. We have only limited control over our bodies. Illness, obesity, or pain may befall our bodies, leaving some people with a sense of loss of control over those self-same bodies. There is a constant turnover of proteins and cells in our body. Some components have a high turnover: our intestinal lining is completely replaced about once every two days,96 while the average life-span of the red blood cell is about 150 days, and that of the lymphocyte about 17 days.97 In contrast, some components are not changed at all during our lifetime: the crystallin proteins which make up the lens in our eyes are not metabolised at all.98 VIII. SUMMARY OF POINTS The argument we have made seeks to emphasise three points. First, our bodies are often in a state of dependency on other bodies. Second, our bodies are constantly interacting and reacting with the world around us. Third, our bodies are not immutable entities, but are constantly changing and recreating themselves. We need to move away from a vision of a society of bodies which are only of concern to ourselves 94 95 96

97 98

CJ. Boyle, J. MacFie, C. Mitchell, D. Johnstone, P. Sagar and P. Sedman, 'Microbiology of Bacterial Translocation in Humans' (1998) 42 Gut 29. R.B. Sartor, 'Pathogenesis and Immune Mechanisms of Chronic Inflammatory Bowel Diseases' (1997) 92 American journal of Gastroenterology 5S. D.C. Macallan, C. Fullerton, R. Neese, K. Haddock, S. Park and M. Hellerstein, 'Measurement of Cell Proliferation by Labelling of DNA with Stable Isotope-Labelled Glucose: Studies In Vitro, in Animals and in Humans' (1998) 95 Proceedings of the National Academy of Sciences USA 708. A.J. Young and J.B. Hay, 'Rapid Turnover of the Recirculating Lymphocyte Pool In Vivo' (1995) 7 International Immunology 1607. B.K. Derham and J.J. Harding, 'Effects of modifications of a-crystallin on its chaperone and other properties' (2002) 364 Biochemical Journal 711.

The Right to Bodily Integrity

52

MEDICAL LAW REVIEW

63

[2007]

and recognise that to a significant degree, our bodies depend on other bodies and the world around us for their meaning and survival. It is important to emphasise that we are not claiming that interconnection is the only way of appreciating bodies. We accept that our bodies are part of our identity. Our bodies are not just machines that we use to achieve our ends. For many people, their bodies are integral to the goals they are seeking to reach. Without our bodies, the plans for our life would be unattainable. Further, our bodies represent to other people what we are: they identify us and can determine how we are treated. So, for example, the perception that a body is male or female will (unfortunately) determine the way in which a person is treated in society and the roles expected of that person." In a real sense, then, our bodies are not just ours, but part of us. It can, with some justification, be pointed out that it is not just bodies which have these characteristics of immutability and interdependency of the kind we have been discussing, animals, plants and land exhibit them.100 Yet the law is content to describe these as property. However, we argue that the extent to which human bodies gain their meaning, use and existence depends on relations with other bodies and other organisms to a greater extent than certainly plants and land. It may well be that our argument would also justify questioning whether animals should be regarded as property, but we do not intend to pursue that question here.

IX. PRACTICAL IMPLICATIONS OF BODILY INTERCONNECTION What we have been arguing, however, is that an important part of the picture of our bodies is that they are giving and taking not only from the world around, but also from other bodies. This, we suggest, is part of the difficulty in finding an appropriate legal response to the classification of bodies. No single model can capture the nuances of bodily life: that our bodies are ours; are in relationship with others; are in constant flux; and yet central to our identity of ourselves. What the law should seek is a model which reflects, supports, and respects these aspects of our bodies. We propose now to address some of the issues which have troubled those who have considered the issue of the legal categorisation of the body and to reflect on how an appreciation of the interconnection of 99

P.-L. Chau and J. Herring, 'Men, Women, People: the Definition of Sex' in B. BrooksGordon, L. Goldsthorpe, M Johnson, A. Bainham (eds.) Sexuality Repositioned (Hart 2005). 100 We are grateful to an anonymous reviewer for this point.

64

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

53

bodies might assist in analysis. What follows does not purport to be the only way that the understanding of bodies we promote could be applied in a practical sense. No doubt people sharing our view could still disagree on some of these issues.

A. The Moore Decision and Control of Removed Bodily Products The decision in Moore has generated much comment in this debate.101 John Moore, suffering from hairy cell leukaemia, had his spleen removed. Dr Golde discovered that cells from his spleen contained potentially beneficial properties. He developed a cell line from the spleen which he eventually sold for $15 million. The products produced as a result were said to be worth several billion dollars. His research on the spleen was carried out without Moore's consent or knowledge. Moore brought an action based on conversion, breach of fiduciary duty and informed consent. The Californian Supreme Court rejected the conversion claim declaring that there was no precedent on which to base a claim that people had property rights in their bodies and that it would be inappropriate for the law now to recognise one. To recognise one would cause difficulties: it would hinder medical research by restricting access to raw materials and lead to a 'litigation lottery'. The prospect of patients 'shopping around' to find who would offer them the best price for their bodily parts or products was not an attractive one.102 Dissenting from the majority opinion in the Moore case, Justice Mosk argued that the law should at least recognize Moore's ... right to do with his own tissue whatever the defendants [including his doctor and the University] did with it: i.e., he could have contracted with researchers and pharmaceutical companies to develop and exploit the vast commercial potential of his tissue and its products. To some, Moore shows the problem with not adopting the property approach. Vast sums of money were made by the scientists, but the person who made 'everything possible' was left with nothing. A property approach would ensure he was adequately rewarded. The difficulty is that the property approach might ensure he was over-rewarded. On the facts, if we regarded the DNA sequence as his and therefore accept he has a claim to the money produced from his property, then 101

Moore v. Regents of the University of California 793 P 2d 479 (Cal. 1990). For an useful discussion of the issues arising from this case see C. Harrison, 'Neither Moore nor the Market: Alternative Models for Compensating Contributors of Human Tissue' (2002) 28 American Journal of Law and Medicine 77. 102 They accepted that he might have a claim for breach of fiduciary duty.

The Right to Bodily Integrity

54

MEDICAL LAW REVIEW

65

[2007]

in theory he should be entitled to all the proceeds. There is a danger that valuable research into stem cell lines and DNA will be hindered if patients are able to claim an interest in the products.103 The door might be opened to a lawyer's goldmine as weeks are spend in the courtroom attempting to ascertain whose bodily material was used in the creation of a particular product. It may be that the Moore decision is complicated by the fact that the research on Moore's body parts was carried out without his consent and permission. The decision left this deception without any form of sanction. But to penalise the use of a person's body parts without permission does not require us to recognise the body as property. The Human Tissue Act 2004, for example, creates a scheme which, to some extent, protects people's rights to control what happens to their bodily material without explicitly giving them property rights over them. The real issue is money. To some, to give an individual whose body by chance carries a useful DNA sequence a share in millions of dollars is iniquitous. On the other hand, is it any less iniquitous that the money should end up in the hands of the scientists who may have put little effort into the discovery? And some people are able to make large sums of money from their outward appearance which may simply be an accident of DNA. Some have suggested that genetic information that creates a useful product should be seen as owned by the community and the money put to projects that benefit the community.104 Loane Skene has summarised the issues that need to be balanced here in this way: We need legal principles that promote healthcare, teaching medical research and the development of new drugs, but at the same time to take account of people's sensitivity concerning the removal, retention and use of human bodies, excised body parts and tissue.105 She believes the best balance is achieved in relying on autonomy rights rather than property rights in respect of bodily material. Seeing the Moore decision with the points made above concerning interconnection and mutability provides some further perspectives. First, as our bodies partake of the great giving and taking between all bodies, there is an argument that it is only just that a body be made available to other bodies, if it holds the key to assisting them. In other words, there could be a moral obligation to allow one's bodily material to be used for the benefit of others. This might even lead to a 103 104 105

Department of Health, Human Bodies, Human Choices (DoH, 2002), at para 17.20. J. Harris, supra n. 1. L. Skene, supra n. 23, at 102-103.

66

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

55

presumption that an individual consents for her material to be used for medical research.106 Harris has argued: We all benefit from the existence of the social practice of medical research. Many of us would not be here if infant mortality had not been brought under control, or antibiotics had not been invented. Most of us will continue to benefit from these and other medical advances (and indeed other advances such as clean drinking water and sanitation). Since we accept these benefits, we have an obligation in justice to contribute to the social practice which produces them.107 Such an approach could be supported by the argument that the provision and use of bodily material for medical research should be regarded as a natural reflection of the interchanges between bodies and should be encouraged and enabled by the law. If money is required to encourage the use of such material then that should be permitted. Second, any argument that this material was just Mr Moore's should be resisted. His body and spleen were the product of the interaction between his body, other bodies, and the wider environment. Its removal and use in another's bodies could be regarded as no more than the continuation of the interchange between him, other bodies and the wider world from which he himself had benefited. Our argument is not then based on the utilitarian argument that human-kind benefits from the facilitation of the use of bodily material,108 but rather is based on an obligation flowing from the interconnection between bodies and the world from which the individual has benefited in the past and will benefit in the future.

B. Conceptions of Genetic Privacy It is generally thought that medical information about a person should be kept confidential unless he or she chooses to make it public. However, with increasing understanding of genetics, this is no longer possible. As mentioned above, genetic information is not data that can be regarded as belonging to one person, but rather their family

106 107 108

J. Harris, 'Law and Regulation of Retained Organs: the Ethical Issues' (2002) 22 Legal Studies 527. J. Harris, 'Scientific Research Is a Moral Duty' (2005) 31 Journal of Medical Ethics 242, at 242. J. Bovenberg, 'Inalienably Yours? The New Case for an Inalienable Property Right in Human Biological Material: Empowerment of Sample Donors or a Recipe for a Tragic Anti-commons?' (2004) 1 SCRIPT-ed 591.

The Right to Bodily Integrity

56

MEDICAL LAW REVIEW

67

[2007]

and even the wider community.109 The ethical and legal regulation of confidential information has been based on an assumption that the information is of significance only for the relevant patient. However, in the case of genetic conditions, this is no longer true.110 Genetic medical information is not just 'my information' but 'our information'111 and it is difficult to fit within the traditional model protecting medical confidentiality.112 This then leads to complex issues arising when one person has tests which reveal significant genetic information about their family which he or she does not wish revealed. The Human Genetics Commission has argued: Bearing in mind the principle of genetic solidarity and altruism, we take the view that disclosure of sensitive personal genetic information for the benefit of family members in certain circumstances may occasionally be justified. This would arise where the patient refuses to consent to such disclosure and the benefit of disclosure substantially outweighs the patient's claim to confidentiality.113 The arguments in this article would support an approach based on 'genetic solidarity and altruism'. However, we would place little weight on the patient's claim to confidentiality in the case of genetic information which is relevant to the patient's family, as the information is not in truth hers. Rather the issue is the balancing of the relatives' right to know and right not to know, as developed in Graeme Laurie's powerful analysis of the issue.114 He explains that privacy can be understood in two senses: spatial privacy, which is 'a state of non-access to the individual's physical or psychological self and informational privacy, which is 'a state in which information about an individual is in a state of non-access from others.'115 So understood privacy 109

110

111 112

113 114

115

An analogy might even be drawn with the way that the deep seabed can be regarded as part of the 'common heritage of mankind': see A. Strati, 'Deep Seabed Cultural Property and the Common Heritage of Mankind' (1991) 40 I.C.L.Q. 859. See R v. Department of Health Ex p. Source Informatics [2001] Q.B. 424 where the Court of Appeal approved the use of anonymised data for research purposes, without the consent of the individuals. R. Gertz, 'Is It "Me" or "We"? Genetic Relations and the Meaning of 'Personal Data' Under the Data Protection Directive' (2004) 11 European Journal of Health Law 231. See the excellent coverage in G.T. Laurie, supra n. 6. Also V. English and A. Sommerville, 'Genetic Privacy: Orthodoxy or Oxymoron' (1999) 25 Journal of Medical Ethics 144. Human Genetics Commission, Inside Information: Balancing Interests in the Use of Personal Genetic Data (Human Genetics Commission, 2002) para 3.68. Laurie, supra n. 6. See also C. Ngwena and R. Chadwick, 'Genetic Diagnosis Information and the Duty of Confidentiality: Ethics And Law' (1993) Medical Law International 231. Laurie, supra n. 6 at 6.

68

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

57

can be used to support both a right to know some information and a right not know other information.

C. The Human Tissue Act 2004 The Human Tissue Act 2004116 attempts to strike a delicate balance. On the one hand, it recognizes the importance of ensuring that there is effective consent to the removal and use of human tissue. On the other hand, there is a recognition that the use of human tissue is enormously important for research into illness and for professional training.117 The Act attempts to restore public trust into genetic research and the collection of human biological samples,118 but not at the cost of severely hampering research into fatal diseases. It might have been thought from the furore that followed the various scandals preceding the Act, and some of the rhetoric from the Government in connection with the Act, that we would now have a clear principle that body organs and materials can only be retained with consent. Although this appears as a cardinal principle, the number of exceptions to it means that its paramountcy is greatly weakened. We cannot say to patients 'when the Human Tissue Act is in force, no human material can be taken from your body without your consent'; we can only say 'no human material can be taken from your body without your consent, unless it is permitted under the Act.' Notably, a living person's material can be used without their consent for training, audit or teaching.119 The justification of the exception that it is 'considered intrinsic to the proper conduct of a patient's treatment or are necessary for the public health of the nation' will not convince everyone.120 To many, the Act represents an uneasy compromise between individuals' rights in their own bodies and the interests of society in general; or between models based on using rights versus property models to protect bodily material.121 However, following the approach adopted in this article, seeing bodies as in a part ours, but in part in constant interchange with others and the world around us, the Act simply reflects the uneasy tension which is the truth about bodies. It is not the Act's fault that a clear conceptual basis cannot be found; it is a reflection of the tensions that should be seen in the body. 116 117 118 119 120 121

The Human Tissue (Scotland) Act 2006 governs the law on this area in Scotland. Genetic Interest Group, Human Bodies, Human Choices, A Response from the Genetic Interest Group (Genetic Interest Group, 2004). Medical Research Council, Public Perceptions of the Collection of Human Biological Samples (MRC, 2000) and Human Genetic Council Inside Information (HGC 2002). Human Tissue Act 2004, s. 1 and Schedule 1. Department of Health, Human Tissue Act 2004 Explanatory Notes (TSO 2004). D. Morrison, 'A Holistic Approach to Clinical and Research Decision-Making: Lessons for the UK Organ Retention Scandals' [2005] Medical Law Review 45.

The Right to Bodily Integrity

58

MEDICAL LAW REVIEW

69

[2007]

In summarising their views on the Act, Liddell and Hall122 state: From some moral perspectives the Act is too lax, and from others it is unduly strict. But when scrutinised for whether it finds a synchronous overlapping consensus between competing moral views, the Act satisfies in many respects. It sets out a policy which recognises that tissue is extremely useful for therapy and related activities, and that tissue is fundamentally connected with respect for a person's dignity, autonomy and moral agency. In doing so it goes a long way towards accommodating the differences between individuals' rational fears, desires and conceptions of the good. This quotation sees the Act as needing to balance the individual's dignity and autonomy, and the benefits to medical science of bodily samples. Our approach, emphasising the interconnection of bodies, denies such a fundamental clash. The use of bodies to help other bodies is part of everyday life and not an activity which requires a powerful justification. The question is rather, what use is a reasonable use, given the general interchanges between bodies.

D. Organ Donation The law on organ donation as set out in the Human Tissue Act 2004, both start with no presumption of consent and only permit the removal of an organ from a live person or a cadaver where there is an appropriate consent.123 In cases where organs are removed from a dead person, consent must come from the individual himself or herself; or failing that, from a person nominated by the deceased to make the decision; or failing that, from the person who is in the closest 'qualifying relationship' to the deceased.124 In the absence of consent from one of these sources, organ transplantation is not possible. Live organ transplants require not just the consent of the individual, but also the approval of the Human Tissue Authority.125 Before giving approval for a living organ transplant, interviews must be conducted with the donor and a report prepared for the Authority by an independent assessor.126 The law, therefore, is not willing to presume consent.

122 123 124 125 126

K. Liddell and A. Hall, 'Beyond Bristol and Alder Hey: The Future Regulation of Human Tissue' [2005] Medical Law Review 170 at 221. For a detailed discussion of the law see J. Herring, Medical Law and Ethics ('Oxford University Press, 2006), ch. 7. Human Tissue Act 2004, s. 4. Details can be found in Human Tissue Authority, Code of Practice—Donation of Organs, Tissue, and Cells for Transplantation (HTA 2006). Ibid. pp. 19-20.

70

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

59

Indeed in the case of live organ donations to unrelated recipients, even where there is consent, the donation is treated with suspicion.127 In light of the arguments above, we suggest that organ donation should not be regarded as unnatural activity requiring an unusual degree of consent from all interested parties before it is permitted, but rather as a natural part of the interaction between bodies. The law should therefore facilitate organ donation to a much greater extent than it currently does. For example, it could presume consent in the case of the deceased, and welcome and encourage donation in cases of live organ donation. The practical issues surrounding organ donations are complex, and it is not possible to discuss how our approach can be developed in relation to organ donation, in depth. One of us has developed this elsewhere.128 We, however, argue that the law's approach to organ donation should start by seeing it as a reflection of the natural interaction between bodies and the interdependence of bodies. As all of us have enjoyed and participated in such interactions during our lives and we can presume that it is something we would wish to continue to be involved in after death. As Leder129 has argued: If the presumption [that a person consents to removal of organs for transplantation after death] is in the unlimited power of a coercive state, then this manner of organ collection will tend to be felt as intrusive, and enacted in pernicious ways. However, in a society embracing interconnection what is presumed is something quite different: that we are so intimately interwoven in nature and society that the body is never simply one's own but part of a wider circulation. The taking of organs need not then be schematized as the Cartesian extraction of a useable resource, so much as a ceremonial offering with resonances of humility, compassion, and affirmation of life. A presumed consent model is not, however, the only direction our approach could take. Consider the following passage from Brazier's discussion of claims that relatives can claim a right to have a say over what happens to a family member's body after death: 'If my relative's body is mine, be she child, mother, or sister, I may do with my property as I wish. I may elect to sell her component 127 128 129

Ibid. pp. 24 explains that in the case of an altruistic donation a psychiatric assessment of the donor should be carried out. J. Herring, 'Giving, selling and sharing bodies' in A. Bainham, S. Day Sclater and M. Richards, Body Lore and Laws (Hart 2002). D. Leder, 'Whose Body? What Body?' in M. Cherry (ed.) Persons and Their Bodies (Kluwer, 1999) at p. 260.

The Right to Bodily Integrity

60

MEDICAL LAW REVIEW

71

[2007]

parts in public auction. I may donate her for display as a plastinated exhibit. The "property" debate cannot be shirked. I use it here simply to demonstrate that consent based on ownership—this body is mine—authorises not just a right to say NO but grants untrammelled rights of disposal to the "owner". Despite the language of ours and mine, it is an option most of the families I have met abhor. The sense of continuing relationship, of still being parents, sharply distinguishes their child, or their husband, from their house or their car. The interests which families perceive centre on the integrity and welfare of the family of whom the deceased is still a part, and will remain so for decades, if not generations. How the mortal remains of that person are laid to rest (or otherwise disposed of) is of overwhelming importance for the health and future of that family. The injury done to a family whose religion requires burial of the body intact, or cremation of every speck of bodily material, when organs are taken without their permission is a violation of religious freedom'130 This passage emphasizes the significance that a body can take in a communal life. In our terminology, such an approach could be supported on the basis that for that body within its community full disposal is part of the proper 'give and take' between bodies. In that community of bodies, a burial of the full body is a reflection of the recognition of the significance of bodies.

X. CONCLUSIONS Our bodies are 'leaky', to use the term coined by Margrit Shildrick.131 Not just in the sense that our bodies leak out material, but that the meaning and understanding of the self is a concept that cannot be fully captured by a single concept or approach. We have sought to argue that a key component of understanding our bodies is that they exist in relationship with other bodies, are inter-dependent with other bodies and are in a constant state of flux. These aspects are not caught by the approaches normally taken to legal status of bodies based on property or rights to integrity or privacy. The argument made in this paper can be put into a wider context. Legal doctrine is traditionally built on the assumption that each 130 131

M. Brazier, 'Organ Retention and Return: Problems of Consent' (2003) 29 Journal of Medical Ethics 30, at 32. M. Shildrick, Leaky Bodies and Boundaries. Feminism, Postmodernism and (Bio)ethics (Routledge 1997).

72

The Right to Bodily Integrity

Med.L.Rev.

My Body, Your Body and Our Bodies

61

person is an autonomous adult and the law seeks to protect the interests and rights of each person. This has led to a lack of emphasis being placed on the importance of community or relationships. Legal scholars have begun to develop doctrinal approaches which seek to develop as 'the norm' not an isolated autonomous individual, but rather individuals in relationships of inter-dependency with others. This is true of our lives and it is true of our bodies too.132 Our true sense of self and identity is not found in our confined, owned body, but in the breaking, mixing and interaction of our bodies with others and with the wider environment.133

132 133

S. Shildrick and R. Mykitiuk, Ethics of the Body (MIT Press 2005). L. Irigaray, An Ethics of Sexual Difference (Cornell University Press 1993).

[3] AGAINST THE RIGHT TO BODILY INTEGRITY: OF CYBORGS AND HUMAN RIGHTS GOWRI RAMACHANDRANf INTRODUCTION Creating a list of fundamental human rights is a controversial project, but there is one right that appears in many lists—a right to bodily integrity, security, or control over one's own body.1 The content of what the right should be is hotly contested.2 For instance, does the right to bodily integrity require that organ selling be forbidden?3 Or, do funda-

t B.A., Yale College; M.A., Harvard University; J.D., Yale Law School. Visiting Associate Professor, University of California, Berkeley School of Law, Associate Professor of Law, Southwestern Law School. I have received helpful comments from Anshul Amar, Ronald Aronovsky, Molly Beutz, Devon Carbado, David Fagundes, Bryant Garth, John Greenman, Dante Harper, Sonia Katyal, Janine Kim, Sung-Hui Kim, Ethan Leib, Stephen Munzer, Camille Gear Rich, Angela Riley, Michael Scott, Patrick Shin, Dean Spade, Michael Waterstone, and participants at the Law and Society conference, the Southeastern Association of Law Schools conference, and the Lavender Law conference. The paper also benefited from my participation as a fellow at the Cardozo Law School Patenting People Conference. Mark Berkebile, Sylvia Chiu, Brian Craggs, Heather Croft, Michael Manapol, and John Trani provided helpful research assistance. The editors of the Denver University Law Review provided excellent editorial advice. Any errors are my own. 1. See, e.g., Washington v. Glucksberg, 521 U.S. 702, 720 (1997) (citing Rochin v. California, 342 U.S. 165 (1952) (recognizing a right to "bodily integrity"); Universal Declaration of Human Rights, G.A. Res. 217A, at 71, 72, U.N. GAOR, 3d Sess., Istplen. mtg., U.N. Doc. A/810 (Dec. 10, 1948), available at http://daccessdds.un.org/doc/RESOLUTION/GEN/NRO/043/88/IMG/NR004388. pdf?OpenElement (stating in Article 3 that "[e]veryone has the right to life, liberty and security of person"); MARTHA C. NUSSBAUM, WOMEN AND HUMAN DEVELOPMENT: THE CAPABILITIES APPROACH 78 (2000) (listing bodily integrity as one of ten "central human functional capabilities"). 2. See, e.g., Stephen R. Munzer, An Uneasy Case Against Property Rights in Body Parts, in PROPERTY RIGHTS 259, 261 (Ellen Frankel Paul et al. eds., 1994); Radhika Rao, Property, Privacy, and the Human Body, 80 B.U. L. REV. 359, 360-63 (2000) (describing the American constitutional right to bodily integrity and the fact that it has the character of a privacy interest—not a property interest—in that it protects against state interference, but does not protect a right to alienate the interest); see also Margo A. Bagley, Patent First, Ask Questions Later: Morality and Biotechnology in Patent Law, 45 WM. & MARY L. REV. 469, 511-12, 546 (2003) ("[T]he result may soon be, among other things, patents on human fetuses that are genetically modified in ways one can only imagine. Patent protection could convert such fetuses, to the extent they are denied constitutional protection, into justifiable commodities, supplying life-saving tissue and organs to sick children and adults."). 3. See, e.g., U.S. DEP'T OF HEALTH & HUMAN SERVS., ORGAN TRANSPLANTATION: ISSUES AND RECOMMENDATIONS 99 (1986); HASTINGS CTR., ETHICAL, LEGAL AND POLICY ISSUES PERTAINING TO SOLID ORGAN PROCUREMENT: A REPORT OF THE PROJECT ON ORGAN TRANSPLANTATION 3-4 (1985); Munzer, supra note 2, at 266 (describing the Kantian human dignity argument as applied to organ sales); see also Susan M. Shell, Kant's Concept of Human Dignity as a Resource for Bioethics, in HUMAN DIGNITY AND BIOETHICS: ESSAYS COMMISSIONED BY THE PRESIDENT'S COUNCIL ON BIOETHICS 333,344-45 (2008), available at http://www.bioethics.gov/ reports/human_dignity/human_dignity_and_bioethics.pdf.

74

The Right to Bodily Integrity

2

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

mental rights require that organ selling be permitted?4 What about sales of the use of one's body, such as prostitution? Do we violate fundamental rights by permitting the practice?5 Do we violate fundamental rights by forbidding it?6 What about the sale of manual labor that is injurious to the body?7 In other words, there is deep disagreement about whether the right over one's body and its uses is a property-like right that must be alienable in exchange for money, or is a dignity or privacy-like right that must not be sold. In this article, I argue that both sides are off the mark. The concept of a monolithic, fundamental right to bodily "integrity" is both descriptively and normatively wrong. There should be no legal "right to control one's own body," saleable or not, with a scope that matches up perfectly with the physical borders of the organic, physically continuous human body. This is not to say that we should abandon many familiar rights such as the right to not be tortured or raped. Rather, it is to say that there should be no one-to-one mapping between the physical borders of the organic, integrated human body and the legal borders of the rights derived from it. For instance, once we determine the relationship between our bodies and fundamental rights, we might not derive any freedom to resist vaccination (although certainly other rights, such as religious rights, might protect this freedom8). On the other hand, we might be led to pro4. Cf. Eugene Volokh, Medical Self-Defense, Prohibited Experimental Therapies, and Payment for Organs, 120 HARV. L. REV. 1813,1835 (2007). Volokh based his argument not in a right to "bodily integrity," but in a right to self-defense. Id. at 1815-16. 5. See Stephanie Farrior, The International Law on Trafficking in Women and Children for Prostitution: Making it Live Up to Its Potential, 10 HARV. HUM. RTS. J. 213, 218 n.24 (1997) (noting the argument made by Coalition Against Trafficking in Women that prostitution "usurps and negates prostitute women's right to human dignity, bodily integrity and physical and mental well-being"); Jane E. Larson, Prostitution, Labor, and Human Rights, 37 U.C. DAVIS L. REV. 673, 677 (2004) (pointing out that the view—"any form of prostitution is a human rights violation"—is supported by the 1949 UN Convention for the Suppression of the Traffic hi Persons and the Exploitation of the Prostitution of Others where it states that "prostitution and .. . traffic in persons for the purposes of prostitution are incompatible with the dignity and worth of the human person"). 6. See Int'l Comm. for Prostitutes' Rights, World Charter for Prostitute Rights, in A VINDICATION OF THE RIGHTS OF WHORES 40, 40 (Gail Pheterson ed., 1989), available at http://www.walnet.org/csis/groups/icpr_charter.html; Norma Jean Almodovar, For Their Own Good: The Results of the Prostitution Laws as Enforced by Cops, Politicians and Judges, 10 HASTINGS WOMEN'S L.J. 119,123 (1999) (arguing that the subsidiary effects of criminalizing prostitution is "violative of human rights and dignity"); Larson, supra note 5, at 681 (describing arguments for legitimizing prostitution on the grounds that it "is a free choice made by an autonomous individual" and that "[r]espect for women's self-determination requires respect for female choices about sex and survival"); see also DEBORAH L. RHODE, JUSTICE AND GENDER: SEX DISCRIMINATION AND THE LAW 262 (1989). 7. See, e.g., RABBINICAL COUNCIL OF AM., POLICY STATEMENT ON HUMAN DIGNITY AND LABOR (1987), http://www.rabbis.org/news/article.cfm?id=101063 (describing the fact that "workers in chemical factories may be exposed to dangerous chemicals or radiation, the effects of which are not recognized or diagnosed for many years" as compromising human dignity, to explain a position supporting "legislation that will raise the standards of employment" hi that and other industries). 8. E.g., Sherr v. Northport-East Northport Union Free Sch. Dist, 672 F. Supp. 81, 91 (E.D.N.Y. 1987) (finding that under the First Amendment, religious exemption to New York's mandatory inoculation program for school children must be extended to all persons who sincerely

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

75

3

tect freedoms of dress and makeup, even though these activities do not involve the manipulation of one's organic, physically continuous human body.9 Similarly, the relationship of the body to fundamental rights might lead us to regulate contracts entered into between patients and sellers of prostheses, despite the fact that prostheses are not human. On the other hand, we might not find a justification for either prohibiting or permitting blood sales.10 In Part I, I argue that those who promote an inalienable or noncommodifiable right to bodily integrity—a right that cannot be exchanged for money—fail to recognize the fact that possession is not the only important right in a physical object. Even when the sale of possessory rights in body parts is prohibited, the sale of use and exclusion rights in the body, such as the sale of manual labor, are permitted, and these sales can cause the same sort of physical harm and risk that sale of possessory rights can cause. Indeed, I show that even market exchanges in the possession and use of non-human objects can cause the same sort of physical harm and risk that property rights in parts and uses of the human body can cause. This is increasingly the case given dependence on medical and other technological devices for sustaining life and health. In sum, those promoting dignity-based rights in the organic, integrated, human body that cannot be alienated for money are descriptively wrong about the body's complex relationship to its surroundings. In Part II, I argue that those who favor a property-like right to possess and use the human body and its parts free from limits neglect the fact that property and contract rights can be regulated: ownership of an object does not entail sole dominion over the object. Thus, even if "your body is your property," that does not entail a fundamental right to free markets hi bodies, their parts, and their uses. In other words, those promoting property-like rights hi the organic, integrated, human body that must be alienable for money, as a matter of fundamental rights, are descriptively wrong about property. In Part HI, I argue that as a normative matter, we should not use dignity or autonomy arguments to promote any monolithic right to bodily integrity, whether alienable or not. However, my critique of a monolithic concept of a right to bodily integrity, demarcated by the organic, human, physically integrated body's borders, still leaves room to justify a more hold religious beliefs, and not just persons who are bona fide members of a recognized religious organization). 9. Cf. Gowri Ramachandran, Freedom of Dress: State and Private Regulation of Clothing, Hairstyle, Jewelry, Makeup, Tattoos, and Piercing, 66 MD. L. REV. 11,60-69 (2006). 10. However, there may be other, purely policy-based, non-rights-based justifications for the regulation of those transactions, such as public health. See, e.g., RICHARD TUMUSS, THE GIFT RELATIONSHIP (1970), reprinted in THE GIFT RELATIONSHIP: FROM HUMAN BLOOD TO SOCIAL POLICY, 57-315, at 314 (Ann Oakley & John Ashton eds., 1997) ("[Commercial markets are much more likely to distribute contaminated blood; the risks for the patient of disease and death are substantially greater.").

76

The Right to Bodily Integrity

4

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

nuanced version of rights in the body. Thus, I consider dignity and autonomy as approaches to justifying more nuanced rights in the human body, ones whose legal borders may not line up with the human body's physical borders. I conclude that dignity as a basis for singling out the body and prohibiting these sales is too arbitrary for a pluralistic society. Autonomy as a basis for prohibiting the regulation of these sales ignores the inevitable presence of economic and cultural coercion. Finally, I consider and critique the capability approach to justifying nuanced rights in the human body, since it arguably solves many of the problems identified with dignity and autonomy. Nevertheless, all this critique need not bring us to the conclusion that human or fundamental rights have nothing to say about torture, prostitution, or forced labor. In Part IV, I propose that the body's relationship to fundamental rights can be rooted in a proceduralist approach—such as the use of fundamental rights to promote a dynamic, evolving culture— just as speech rights are thought to promote political and cultural processes. The reason is that the body is uniquely "personal and political."11 The body is especially personal because it grounds our subjective experience, the experience that others cannot directly access. But the body is also especially political because it is a primary site for exploring different values, subcultures, and identities. This means that to avoid a stagnant culture, we should use fundamental rights to avoid the consolidation of control over individuals' bodies, whether hi the hands of the state or in the hands of economically powerful actors. Avoiding such consolidated control is a key component of ensuring that the formation of identities, subcultures, and cultural values is not directed by a powerful few. This way of justifying the relationship between the body and fundamental rights does not lead to either an inalienable "right to bodily integrity" or to a particularly alienable "right to control one's own body." Under this approach, the organic, integrated body no longer marks any border between what we have human or fundamental rights in and what we do not. To demonstrate, in Part VI provide some tentative examples of how we would apply this view to questions such as state intrusion on the body, rights to modify one's own body, prostitution, organ selling, and the regulation of property and contract due to its effect on bodies, such as patent law, employment and housing law, and welfare law. Instead of creating fundamental rights to protect "bodily integrity" hi these situations, we should create fundamental rights where necessary to avoid monopolies over bodies.

11. "The personal is political" was coined by members of New York Radical Women, including Carol Hanisch, in the late 1960s. JENNIFER BAUMGARDNER & AMY RICHARDS, MANIFESTA: YOUNG WOMEN, FEMINISM, AND THE FUTURE 19 (2000).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

77

5

I. WHAT THE DIGNITY OR PRIVACY VERSION OF BODILY INTEGRITY is MISSING DESCRIPTIVELY: BODIES DEPEND ON ENVIRONMENTS There may be simple utilitarian policy reasons to regulate or deregulate particular instances of body commodification. For instance, some argue that prohibiting blood selling improves the quality of the supply of blood.12 Others argue that permitting prostitution would increase economic and social welfare.13 But in this article, I focus on rights in bodily use and possession that would trump these typical political concerns of increased economic welfare, public health, or the expression of a society's cultural values through law.14 In other words, should constitutional law, human rights law, or other forms of counter-majoritarian law have any role in these debates? If so, what should those rights in bodily use and possession look like? There is a great deal of disagreement over this question, but one significant class of views on the subject relies on the following concern: the commodification of the human body's uses or components risks harm to human dignity, or perhaps privacy or personhood, in a way analogous to the way that slavery, the ultimate commodification of the human body, does.15 For this set of views, affording the formal legal status of property to the body or its uses and parts is problematic because it threatens what is often described as a fundamental right to human dignity.16 Alternately, it is described as threatening a fundamental right to bodily integrity,17 respect for the sacredness or sanctity of human life,18 religious moral man12. See, e.g., TTTMUSS, supra note 10, at 206,270, 314. 13. E.g., Almodovar, supra note 6, at 127 ("'Quality of life' is a subjective concept and the least impressive argument for the continued harassment, arrest and incarceration of a group of people who are trying to improve their quality of life by earning a living."); Martha C. Nussbaum, "Whether from Reason or Prejudice": Taking Money for Bodily Services, 27 J. LEGAL STUD. 693, 696 (1998) ("The legalization of prostitution, far from promoting the demise of love, is likely to make things a little better for women who have too few options to begin with."). 14. Cf. Dan M. Kahan, The Cognitively Illiberal State, 60 STAN. L. REV. 115, 115 (2007) (arguing that "individuals naturally impute socially harmful consequences to behavior that defies their moral norms," thus supporting law that "repress [es] morally deviant behavior" while "honestly perceiv[ing] themselves to be motivated only b y . . . harm prevention"). 15. See MICHELE GOODWIN, BLACK MARKETS: THE SUPPLY AND DEMAND OF BODY PARTS 194-96 (2006) (describing authors opposing commodification of body parts on the grounds that it is like slavery); see also DAVID B. RESNIK, OWNING THE GENOME: A MORAL ANALYSIS OF DNA PATENTING 1-7 (2004) (describing controversy over DNA patenting that includes slippery slope arguments ending in slavery). 16. E.g., sources cited supra note 3. 17. E.g., Rao, supra note 2, at 387-88 (describing the American constitutional right to bodily integrity and the fact that it has the character of a privacy interest, not a property interest, in that it protects against state interference but does not protect a right to alienate the interest). 18. E.g., Proclamation No. 8339, 74 Fed. Reg. 3955 (Jan. 15, 2009) (proclaiming the President's designation of January 18, 2009 as National Sanctity of Human Life Day); Daniel C. Dennett, How to Protect Human Dignity from Science, in HUMAN DIGNITY AND BlOETfflCS, supra note 3, at 39,40 ("Human life, tradition says, is infinitely valuable, and even sacred .. . ."); William P. Clark, Op-Ed, For Reagan, All Life Was Sacred, N.Y. TIMES, June 11, 2004, at A27, available at 2004 WLNR 5467725.

78

The Right to Bodily Integrity

6

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

dates,19 or "personhood."20 This is part of the justification provided for prohibitions on organ selling21 and prostitution.22 It is not just moral conservatives who fit within this camp, however. There are disability rights activists, those who are concerned with the rights of sexual minorities, and egalitarians who oppose, on dignitarian-type grounds, leaving the modification of bodies up to markets. The argument might go as follows: A ban on slavery means that humans are fundamentally ineligible for the legal status of property— that which persons (including corporations) may both exercise control over and alienate, either in whole or in part, and often in exchange for money.23 Therefore, to allow for property rights in parts or uses of humans would blur the line between humans and property. This would threaten dignitary rights in our own bodies, respect for our own bodies, and perhaps even respect for human dignity itself.24 Of course, there are more nuanced objections to commodification of the body,25 but many of them share a reliance on the concept that some set of commodification practices threatens human dignity, a fundamental aspect of "personhood" such as bodily integrity, or some similar universal concept such as a fun-

19. E.g., Vatican Bishop Points to Modern Social Sins, CATHOLIC NEWS AGENCY, Mar. 11, 2008, http://www.catholicnewsagency.com/new.php?n=12031 (reporting the inclusion of "'bioethicaT violations such as birth control" and "'morally dubious' experiments such as stem cell research" in a list of seven modern social sins released by the Vatican via an interview with Bishop Girotti); see also Nicola Gori, The New Forms of Social Sin, L'OSSERVATORE ROMANO, Mar. 9, 2008, available at http://blog.acton.org/uploads/penitentiary_interview.pdf (interview with Bishop Girotti). 20. E.g., Margaret Jane Radin, Market-Inalienability, 100 HARV. L. REV. 1849, 1852, 1885 (1987) [hereinafter Radin, Market-Inalienability]; see also MARGARET JANE RADIN, CONTESTED COMMODITIES 55-56 (1996) [hereinafter RADIN, CONTESTED COMMODITIES]; Margaret Jane Radin, Property and Personhood, 34 STAN. L. REV. 957, 1014-15 (1982) [hereinafter Radin, Property and Personhood]. 21. E.g., U.S. DEP'T OF HEALTH & HUMAN SERVS., supra note 3, at 96; Munzer, supra note 2, at 266 (describing the Kantian human dignity argument as applied to organ sales). 22. E.g., Susan Estrich, What I Could't Teach Spitzer at Harvard Law, REAL CLEAR POLITICS, Mar. 13,2008, http://www.realclearpolitics.com/articles/2008/03/what_i_couldnt_teach_ eliot_spi.html: I really believe it is none of my business, as a member of the public or the media, if a political or business leader has an affair. I don't sit in judgment of other people's marriages or their private lives. But prostitution isn't just sex. Prostitution objectifies the women who engage in it, dehumanizes sex and sexuality, and turns both into commodities with a price tag. See also Ann Lucas, The Currency of Sex: Prostitution, Law, and Commodification, in RETHINKING COMMODIFICATION 248, 248 (Martha M. Ertman & Joan C. Williams eds., 2005) ("[M]ost objections to prostitution are commodification-based."). 23. STEPHEN R. MUNZER, A THEORY OF PROPERTY 48^49 (1990) ("Property rights are body rights that protect the choice to transfer."); Radin, Market-Inalienability, supra note 20, at 1854 n.19 ("Traditional property rights are alienable in all senses except cancellation; they may be forfeited, relinquished, waived, condemned, and transferred by both gift and sale."). 24. See, e.g., DAVID B. RESNK, OWNING THE GENOME: A MORAL ANALYSIS OF DNA PATENTING 1-7 (2004) (describing the controversy over DNA patenting that includes "slippery slope" arguments ending in slavery). 25. See, e.g., Rao, supra note 2, at 455-56 (arguing that a principle in accord with our intuitions on the subject would allow for property rights in body parts that have been detached from a person, but would not allow for property rights in parts still internal to a person's body).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

79

1

damental human "capability"26 for bodily integrity. The idea has roots in Catholic thinking,27 and also appears in a Kantian argument that human dignity requires persons not to make these sales.28 Bioethics committees and advisory boards commonly use the fact that something involves body commodification as a reason to be ethically concerned about it.29 The public approach to this question—whether commodification of the body is per se problematic—is somewhat schizophrenic, especially in the United States. Selling of organs is forbidden by statute,30 and blood banks will not keep sold blood; yet some plasma centers use purchased blood.31 The sale of manual labor is permitted, including physically ultimate manual labor such as massage therapy. Even payment to volunteers who are willing to have then* colons and vaginas invaded by medical students learning how to perform various exams is permitted.32 However, prostitution is forbidden in most of the United States. Nevertheless, arguments against various practices of body commodification, on the grounds that commodification of the body is problematic to dignity or personhood, continue to have a great deal of purchase, despite the existence of practices ranging from plasma selling to the largely uncontroversial sale of physical labor.33 The view that there is something threatening about assigning the legal status of property to people or parts of people, at least some of the time—for instance, when the part of the person is not detached34—continues to have a great deal of 26. NUSSBAUM, supra note 1, at 78 (listing bodily integrity as one of ten "central human functional capabilities"). It is important to note that although Nussbaum supports an intuitionist, seemingly dignitarian approach to developing her list of capabilities, and although bodily integrity maintains a place on her list, her specific views on how to apply those capabilities to law do not necessarily lead to anti-body-commodification positions. For instance, Nussbaum has elsewhere argued for the legalization of prostitution. See Nussbaum, supra note 13, at 723-24. On the other hand, Radin has derived from Nussbaum's capabilities approach and concept of human flourishing a stance against some forms of commodification. RADIN, CONTESTED COMMODITIES, supra note 20, at 64,93-96. 27. See U.S. CONFERENCE OF CATHOLIC BISHOPS, SHARING CATHOLIC SOCIAL TEACHING 5 (1998), available at http://www.archdiocese-chgo.org/departments/peace_andjustice/pd^teaching_ doc/sharing_social_t.pdf ("[T]he Catholic Church proclaims that human life is sacred and that the dignity of the human person is the foundation of a moral vision for society. . . . [This belief] is the foundation of all the principles of our social teaching."). 28. See Munzer, supra note 2, at 259; Shell, supra note 3, at 344-45. 29. See, e.g., U.S. DEP'T OF HEALTH & HUMAN SERVS., supra note 3, at 96; see also The President's Council on Bioethics, http://www.bioethics.gov (last visited Nov. 2, 2009) (listing "Property in the Body" as one of its main "Topics of Council Concern"). The Council was disbanded on June 11, 2009. Nicholas Wade, Obama Plans to Replace Bioethics Panel, N.Y. TIMES, June 18, 2009, at A24, available at 2009 WLNR 11613820. 30. 42 U.S.C. § 274e(a) (2006). 31. Steven R. Salbu, AIDS and the Blood Supply: An Analysis of Law, Regulation, and Public Policy, 74 WASH U. L.Q. 913, 942 n.163 (1996) (describing the move in the United States towards an all donated blood supply, as encouraged by FDA regulations). 32. See Nussbaum, supra note 13, at 701,706. 33. See id. at 693 ("ALL of us, with the exception of the independently wealthy and the unemployed, take money for the use of our body."); Salbu, supra note 31, at 944—46. 34. See, e.g., Rao, supra note 2, at 455-56 (arguing that a rule forbidding property rights in body parts when the parts are internal to a person, but permitting property rights in body parts when detached from a person, would fit best with our intuitions).

80

The Right to Bodily Integrity

8

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

force. Even anxiety about prostitution, which involves the sale not of a body part, but rather of a service employing the physical body, is often expressed in the terms that it is a commodification of the body.35 However, it is not the specter of human parts or even humans having the formal legal status of property that makes slavery and indentured servitude so horrifying, or markets in human body parts so worrisome.36 In other words, we should not rest our concern with these practices on a formalist idea that humans or human parts having the legal status of property is itself an affront to some definition of what it means to be a human, to some concept of inviolable dignity. This focus is descriptively misplaced, as it relies on an overly simplistic conception of the relationship between humans' bodies and their environments. Whatever human dignity or personhood means, property rights already threaten it, even where the line between property and persons is clear. For instance, if we prohibited the sale of possession rights in bodies and their parts, the sale of use rights would still pose risks to dignity in the sense of health, physical well-being, and physical independence: "The precedents for making use of one another's bodies are sufficiently well established in manual labor . . . ,"37 But manual labor often causes changes to the body over time, such as repetitive stress injuries. Suppose person A sells use of her hands until their function is so impaired that she requires assistance to get dressed and lives with constant pain. Suppose person B sells possession of her blood, or even a kidney, but remains healthy and relatively pain-free. Although person A "merely" sold the use of her body, and person B sold a possessory right to part of her body, can we say that the laborer has somehow risked or harmed her bodily dignity less? On the other hand, it would be infeasible to go so far as to prohibit sales of use rights in the body because this would prohibit all wage labor. The use of person A's body was commodified not just when she was injured, but even when she sold the "labor of animation."38 And a professor commodifies the use of her body by agreeing to stand in front of a 35. E.g., sources cited supra note 22. 36. See GOODWIN, supra note 15, at 198: Slavery's pernicious effect is not exclusively derived from a market evaluation in the human body. Indeed, many slaves were given away as gifts.... The villainy of slavery is best characterized by the creation of a chattel system wherein Black men, women, and children were explicitly and exclusively exploited; stripped of their humanity, tortured, bred, denied legal protection, forbidden educational instruction and religious expression. 37. Martyn Evans, The Utility of the Body, in OWNERSHIP OF THE HUMAN BODY: PHILOSOPHICAL CONSIDERATIONS ON THE USE OF THE HUMAN BODY AND ITS PARTS IN HEALTHCARE 207,207 (Henk A.M.J. Ten Have & Jos V.M. Welie eds., 1998). 38. Sarah S. Jain, The Prosthetic Imagination: Enabling and Disabling the Prosthesis Trope, 24 SCL, TECH., & HUM. VALUES 31, 32 (1999) (internal quotation marks omitted) (quoting Elaine Scarry, The Merging of Bodies and Artifacts in the Social Contract, in CULTURE ON THE BRINK 85, 97 (Gretchen Bender & Timothy Druckery eds., 1994)).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

81

9

classroom for specified periods of time and talk about particular subjects, using her mouth, lungs, and brain.39 One might imagine that we can separate the professor example from the prostitute or someone engaging in manual labor based on whether the work is typically thought of as selling the "use of one's body"—whether the work is culturally viewed as bodily work. But even work not typically thought of in this way could raise concerns about bodily dignity. For example, an employer who requires an employee to wear particular clothes has not in fact required the employee to change his organic, physically continuous body. Most would not describe such an employee, presuming he is not a model, as having sold the use of his body. However, the clothes worn may have an effect on the employee's body so significant that it cannot be cognitively overcome. Suppose the clothing required is high heels. Walking about hi high heels is an entirely different bodily experience than not, even if we leave aside the possibility of long term injury to the body that can stem from wearing high heels. Or suppose the clothing required is tight jeans, skirts with petticoats, or other physically uncomfortable or cumbersome attire; is this somehow less physically intrusive or cognitively overpowering to the worker than the process of having one's blood withdrawn for sale, or an employer's requirement that one's fingernails be trimmed? Umberto Eco has described the experience of wearing tight jeans as so physically affecting that it makes him write differently.40 For many persons, the tight jeans requirement is far more intrusive than the fingernail-trimming requirement, and for some, it would even be experienced as more intrusive than a requirement to obtain a vaccination. It is not just sales of the use of one's body that can cause the same sorts of physical harm or dignitary intrusions that sale of the parts of one's body can. Even the exchange of use or possession rights hi completely inorganic material which has no attributes of personhood can result in the same type of threats to bodily integrity or self-control that property rights in human parts are thought to raise. For instance, it is completely unremarkable for property rights to exist in electronic gadgets. But we might be concerned if owners of patents on products such as pacemakers and robotic arms were permitted to enforce "end user license agreements" ("EULAs")41 against patients. These EULAs could in effect restrict what patients can do with products that have become merged with their own bodies. And we should rightly, I argue, be similarly con39. Nussbaum, supra note 13, at 704 (constructing this example). 40. UMBERTO Eco, Lumbar Thought, in TRAVELS IN HYPERREAUTY 191, 193-95 (William Weaver trans., Harcourt Brace Jovanovich 1986) (1983). 41. An End User License Agreement is a contract that dictates the terms under which an enduser can use software or a device. Users often become a party to these contracts without reading them due to their length and form. See Kevin W. Grierson, Annotation, Enforceability of "Clickwrap" or "Shrinkwrap" Agreements Common in Computer Software, Hardware, and Internet Transactions, 106 A.L.R. 5TH 309, § 2(a) (2003).

82

The Right to Bodily Integrity

10

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

cerned with the effects of property rights in wheelchairs, cochlear implants, tools used in labor, and other such devices on the bodies of those who need or desire to use them. If that example is too sui generis, we can consider that exercise of even the most mundane property right—the right to develop real estate— can affect the bodily dignity of others. If that property right is unregulated with respect to the installation of wheelchair ramps, then how property holders choose to exercise the right will have far-reaching effects on the mobility and lived bodily experience of persons who require wheelchairs to get around. Whether such persons' bodies are "disabled" or not will depend on how those property rights are exercised. And yet, the property holders will have had this effect on others' bodies without having physically "touched," possessed, or used the bodies of the persons using wheelchairs.42 In other words, we can construct many examples where someone has exercised property-like rights over something other than possession of a person or its parts, yet has entailed significant effects on another's lived physical experience. Some of the examples involved the exercise of possession and use rights over non-human objects, while other examples involved the sale of use rights in a human or its parts. In some of these examples, the effects on lived physical experiences are even more significant than the effects of selling possessory rights to a part of the body— selling blood, for instance. The reason we can construct these examples is that bodies, like any other objects, have a complex relationship with their environment.43 Just as failure to provide a neighbor with an easement can affect the neighbor's ability to use his property,44 failure to install a wheelchair ramp can affect another's ability to use his body. This is why refraining from physical intrusions on the human body does not necessarily match up with maximal dignity for the person. There are many ways for the dignity or integrity of bodies to be very significantly affected by cultural norms, markets in items other than bodies, and political rules. Once we recognize that our physical and social 42. See Samuel R. Bagenstos, Subordination, Stigma, and "Disability," 86 VA. L. REV. 397, 429 (2000) (describing an acceptance of the social model of disability in the United States, in which "disability is attributed primarily to a disabling environment instead of bodily defects or deficiencies" (internal quotation marks omitted) (quoting Harlan Hahn, Feminist Perspectives, Disability, Sexuality and Law: New Issues and Agendas, 4 S. CAL. REV. L. & WOMEN'S STUD. 97, 101 (1994)); Mairian Corker & Tom Shakespeare, Mapping the Terrain, in DlSABlLlTY/POSTMODERNrTY: EMBODYING DISABILITY THEORY 1, 2-3 (Mairian Corker & Tom Shakespeare eds., 2002) (describing the shift from medical model of disability to social model, in which activists raised awareness of the fact that impairment alone does not cause disability, but rather social and economic conditions overlaying impairment). 43. See sources cited supra note 42. 44. For instance, an easement by necessity can be required to ensure that another's parcel of land has road access. E.g., Wilson v. Smith, 197 S.E.2d 23, 25 (N.C. Ct. App. 1973) ("A way of necessity arises when one grants a parcel of land surrounded by his other land, or when the grantee has no access to it except over the land retained by the grantor or land owned by a stranger.").

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

83

11

experience of our bodies cannot be easily isolated from the environment, we can see why simply drawing a physical line between persons and property should not satisfy any concerns we might have with bodily dignity, even if we could agree on what dignity means. We should not be satisfied that we have protected persons physically by defining personhood so as to include, as most accounts do, bodily integrity.45 As a descriptive matter, this approach is too simplistic. While the fiction of a human body that could ever be made totally free from "intrusion" or given complete "integrity"46 continues to retain purchase in debates about activities such as organ selling and prostitution,47 it is about to face a profound challenge: developments in biotechnology have already begun to result in very obvious physical mergers of human and non-human parts and entities. For instance, in the case of a pacemaker or a robotic arm, humans are merging with inorganic property of the sort that is routinely and uncontroversially commodified.48 In the case of merging plant genetic material with human genetic material, humans may merge with property that is organic, but which is nevertheless still routinely commodified.49 In the case of merging human and animal genetic material, transplanting an animal organ into a human, or growing a human organ inside an animal, humans may merge with organic property that is legally, but controversially, commodified.50 In some ways this merger is nothing new.51 As I've argued above, very common forms of property such as real estate can have significant effects on the lived physical experience of our own bodies.52 However, developments in biotechnology are making this fact more visible. In the long run, as these mer45. E.g., JAMES HUGHES, CITIZEN CYBORG: WHY DEMOCRATIC SOCIETIES MUST RESPOND TO THE REDESIGNED HUMAN OF THE FUTURE 73, 229-31 (2004) (arguing for "personhood-based 'cyborg citizenship' versus 'human racism,"' yet nevertheless asserting that personhood requires self-ownership of bodies); NUSSBAUM supra note 1, at 78 (including "bodily integrity" in her list of capabilities). 46. See DONNA J. HARAWAY, A Cyborg Manifesto: Science, Technology, and SocialistFeminism in the Late Twentieth Century, in SIMIANS, CYBORGS, AND WOMEN: THE REINVENTION OF NATURE 149,150 (1991); Jain, supra note 38, at 43. 47. See, e.g., sources cited supra notes 3,21,22. 48. E.g., Brian Mockenhaupt, Rebuilding: Bryan Anderson, ESQUIRE MAG., Mar. 2008, at 184, available at 2008 WLNR 25444912. 49. See generally Michael D. Rivard, Toward a General Theory of Constitutional Personhood: A Theory of Constitutional Personhood for Transgenic Humanoid Species, 39 UCLA L. REV. 1425,1434—41 (1992) (describing processes for creating transgenic species). 50. See Elizabeth L. DeCoux, Pretenders to the Throne: A First Amendment Analysis of the Property Status of Animals, 18 FORDHAM ENVTL. L. REV. 185, 220-21 (2007) (describing the successful implantation of human embryonic stem cells into mouse embryos, and the resulting mousehuman hybrids, which had a small amount of human brain cells fully integrated into their brains otherwise made up of native mouse brain cells). 51. Some argue that humans are "embodied in an extended technological world," rather than existing as "distinct beings in an antagonistic relationship with their surroundings." Robert Pepperell, The Posthuman Manifesto, KRTTIKOS, Feb. 2009, http://uitertheory.org/pepperell.htm; cf. HARAWAY, supra note 46, at 150 (attempting to disrupt the naturalization of the human body and of gender, but without seeking to be innocent or transcendent of the systems of power and coercion that socially construct gender and the body). 52. See supra text accompanying note 42.

84

The Right to Bodily Integrity

12

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

gers between people and property become more common, sustaining different formal legal statuses for people and other objects may appear more and more arbitrary. Prostheses such as robotic arms are likely to become common in part because the wars in Iraq and Afghanistan have produced hundreds of amputees, spurring large increases in funding for prosthetic technology. Amazing developments in the field are occurring.53 Researchers at the University of Pittsburgh, for instance, have recently announced the successful development of a robotic arm that a monkey can learn to control sufficiently to pick up and eat food, using only a small device installed hi its brain.54 Transgenic species, or entities which include DNA from two different species, have already been created.55 The species appear to exhibit phenotypic characteristics of both species.56 Animal-human "hybrids" or plant-human "hybrids"57 might someday be useful for growing or developing replacement organs or tissue for humans, as one example of the drive behind this research.58 This prominent merger of humans and property has raised a great deal of anxiety over how we may avoid the state of legalized slavery or other related threats to human dignity. For instance, recent scholarship on "patenting people" has concerned itself with the mixture of human and animal parts, especially genetic material.59 This scholarship expresses fear that because human genetic material can currently be patented legally, and has been, eventually animal-human hybrids with many human characteristics may be patented, and perhaps even turned into a slave class.60 The specter now exists of a farm of highly intelligent pig-human

53. See Mockenhaupt, supra note 48, at 184 ("Funding for prosthetics projects has swelled significantly over the past six years. The Defense Advanced Research Projects Agency, or DARPA, is bankrolling one of the most ambitious programs, the $85 million Revolutionizing Prosthetics project to build a prosthetic arm that matches the human arm in functionality by next year. . . . The fusion of man and machine is upon us, the extraordinary enabling the everyday."). 54. Benedict Carey, Monkey Thinks, Moving Artificial Arms as Own, N.Y. TIMES, May 29, 2008, at Al, available at 2008 WLNR 10097697. 55. See DeCoux, supra note 50, at 222. 56. Id. 57. Politicians have referred to animal-human hybrids, probably meaning both chimeras and transgenic species, where chimeras contain cells from two different entities, and transgenic beings contain DNA from two different entities. See Stephen Munzer, Human-Nonhuman Chimeras in Embryonic Stem Cell Research, 21 HARV. J.L. & TECH. 123, 124 (2007) (providing these definitions). 58. See Bagley, supra note 2, at 505-06. 59. Mat 506-07. 60. See, e.g., id. at 502, 511-12. Indeed, in 2006, Cardozo Law School hosted an entire twoday conference on the legal, moral, and policy implications of patenting human DNA, humananimal hybrids, and other biotechnological innovations. Numerous law professors, government patent lawyers, and others presented arguments at this conference, at which Bagley was the keynote speaker. See Margo A. Bagley, Keynote Address at the Benjamin N. Cardozo School of Law Patenting People Conference (Nov. 12,2006).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

85

13

hybrids being raised for removal of their kidneys and slaughter.61 Property rights in human genetic material are thought to also threaten humans' rights to do as they will with their own bodies—their own genetic material. A patent-holder on genetic material might, for instance, prevent a person with that material from reproducing.62 Some of the literature has drawn on these fears to simply oppose the technology that blurs the line between humans and property. The opposition ranges from proposing outright bans to moderate "think before we act" proposals.63 This opposition literature finds itself in alliance with religious conservative activists who also oppose technologies that blur the line between humans and non-humans.64 These religious activists argue that without a rigid definition of humans, encompassing everything from embryos to persons in irreversible vegetative states, the degradation of human dignity will eventually result.65 In contrast, some argue that we must simply update our definition of what a legal person is to potentially include entities that are not completely human.66 On this view, armed with a proper definition of legal personhood, we could simply forbid property rights in anything that counts as a person, whether completely human or not: property rights in an embryo would be fine perhaps, but property rights in a pig with a high functioning human brain would perhaps not be acceptable. But despite the existence of these dramatically different responses, both fail to come to terms with the hard truth that all of this technology confronts us with: it is not enough to decide the difficult question of who is a person and then simply forbid property rights in that person. It takes much more than giving persons' bodies a special, formal legal status of "non-property" to sufficiently protect the physical well-being and independence of those bodies.

II. WHAT THE PROPERTY VERSION OF BODILY INTEGRITY is MISSING DESCRIPTIVELY: PROPERTY Is NOT SOLE DOMINION An alternate approach to the question of what bodily integrity might mean views control over one's body as a property-like right, essential to freedom or autonomy. In this camp are persons who believe that there is 61. Cf. Bagley, supra note 2, at 506 (describing a patented method for producing human organs from pigs). 62. See HUGHES, supra note 45, at 231 (proposing regulation to prevent this from happening). 63. See Bagley, supra note 2, at 473. 64. E.g., id. at 510 (quoting with approval Professor Leon Kass, a religiously-inspired bioethicist and former chair of President George W. Bush's Council on Bioethics). 65. See id at 496-97. 66. As an example of this approach, the U.S. Patent and Trademark Office initially rejected a patent application for a HuMouse because it "embraces a human being," arguing that the Thirteenth Amendment would prohibit such a patent. Gregory R. Hagen & Sebastien A. Gittens, Patenting Part-Human Chimeras, Transgenics and Stem Cells for Transplantation in the United States, Canada, and Europe, 14 RICH. J.L & TECH. 11, 34,49 (2008).

86

The Right to Bodily Integrity

14

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

a fundamental right to control over one's own body or its parts.67 This theory would not only protect the body from unwanted intrusion, but also would protect one's right to modify one's body, choose to accept or reject medical treatment, and the like. However, autonomy includes the autonomy to contract one's autonomy away. Thus, the strong version of this view would require that commodification of the body be permitted, not simply when it is good economic or social policy, but because to do otherwise would interfere with fundamental rights to ownership of one's own body.68 Strong libertarians would see prohibitions on the commodification of human bodies as unjust impositions on autonomy, and a coherent application of this view would therefore seem to permit organ selling, prostitution, the sale of genetically prized embryos, or employer preferences for "upgraded" workers.69 But to the extent this view derives the right to commodify one's body from a property right in one's own body,70 it relies on a descriptively impoverished view of property as "sole dominion" over an object. The person with ownership of the property, on this view, has the right to use it, exclude others, possess it, and alienate it.71 Because persons own their own bodies, the implication is that they must have the right to sell use and possessory rights in their body and its parts.

67. Though they are not libertarians, major proponents of the transhumanist movement, which supports the use of technology to make humans "better than well," have cited this argument from autonomy in support of permitting such technologies. HUGHES, supra note 45, at 207, 229 (arguing that "[o]nly beings with personhood are exempt from being property, since we each own ourselves and can't be alienated from ownership of ourselves," and noting, with approval, "disparate movements, like transgender rights, working to radicalize our control over our own bodies"); Nick Bostrom, In Defense of Posthuman Dignity, 19 BIOETHICS 202, 210 (2005) ("A liberal democracy should normally permit incursions into morphological and reproductive freedoms only in cases where somebody is abusing these freedoms to harm another person."); cf. Volokh, supra note 4, at 1835 (arguing for a right to sell and buy organs rooted in the right to self defense). See also Bonnie Steinbock, Sperm as Property, 6 STAN. L. & POL'Y REV. 57,66 (1995) (arguing that "individual autonomy should prevail, and sperm is correctly regarded as property that can be bequeathed by will"); Mary Taylor Danforth, Current Topic in Law and Policy, Cells, Sales, and Royalties: The Patient's Right to a Portion of the Profits, 6 YALE L. & POL'Y REV. 179, 191-95 (1988) ("Th[e] property-based notion of control over one's name or likeness should be extended to one's body parts. The common law recognizes the individual's exclusive right to use what is inherently personal, and nothing is more personal than one's own genetic material."); Roy Hardiman, Comment, Toward the Right of Commerciality: Recognizing Property Rights in the Commercial Value of Human Tissue, 34 UCLA L. REV. 207, 218 (1986) (arguing that "human tissue possesses characteristics that satisfy many of the criteria for establishing rights in tangible property"). 68. See sources cited supra note 67. 69. Kg., DAVID A. J. RICHARDS, SEX, DRUGS, DEATH, AND THE LAW 84-127 (1982) (arguing that properly understood autonomy would lead to permission for prostitution); cf. RICHARD A. POSNER, ECONOMIC ANALYSIS OF LAW 139 (3d ed. 1986) (suggesting that a market in babies could benefit those who can bear children but do not want them and those who cannot bear children but want them). 70. See sources cited supra note 67. 71. See WILLIAM BLACKSTONE, 2 COMMENTARIES *2; see also Robert P. Burns, Blackstone's Theory of the "Absolute" Rights of Property, 54 U. ClN. L. REV. 67, 69 (1985) (arguing that the reading of Blackstone as promoting "absolute" property rights is overbroad, and that he believed property was "'independent of civil institutions' only in the most theoretical sense").

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

87

15

But descriptively, ownership does not entail sole dominion over property.72 Instead, property is best thought of as a "bundle of sticks," where the sticks are rights and responsibilities that can be disaggregated from the bundle.73 Thus, for instance, the law of nuisance may prevent me from using my property in a manner that pollutes the air and disturbs my neighbor.74 Or, my neighbor may have an easement by necessity across my property, requiring me to permit her to cross my property so that her parcel is not landlocked.75 She may have this right even as I retain possession of and title to the property. The removal of these "sticks" from my "bundle" of property rights is not generally considered a violation of any fundamental right to my property.76 That is why even the common law of property includes rights such as the easement by necessity or the nuisance action.77 What I do with my property affects other people, and thus, the fact that the body may be analogized to property does not exempt it from this general principle which permits property regulation for the sake of social welfare and efficiency. While extremely low levels of regulation, or even no regulation, might hi fact be the best way to achieve social welfare, this social welfare debate over regulation has nothing to do with fundamental rights. For instance, if my body is like any other form of property, whether the state should decriminalize prostitution would depend on whether (1) the practice is inherently unsafe, (2) women are better off overall when the practice is prohibited or when it is permitted, and (3)

72. See Kristen A. Carpenter, Sonia K. Katyal & Angela R. Riley, In Defense of Property, 118 YALE LJ. 1022, 1026-29 (2009) (contrasting the classic ownership model of property with more modern relational models of property, such as a proposed stewardship model, that would be more descriptively and normatively appropriate to recognizing cultural property claims); David Fagundes, Property Rhetoric and the Public Domain, 94 MINN. L. REV. (forthcoming 2010) (manuscript at 25, on file with author) (describing the popular myth of property as dominion over things, and contrasting it to the more accurate conception of property as a "system that structures social relationships with resources"). 73. See Wesley Newcomb Hohfeld, Fundamental Legal Conceptions as Applied in Judicial Reasoning, 26 YALE LJ. 710,742 (1917): In opposition to the ideas embodied in the passages just given, it is submitted that instead of there being a single right with a single correlative duty resting on all the persons against whom the right avails, there are many separate and distinct rights, actual and potential, each one of which has a correlative duty resting upon some one person. 74. See, e.g., Aldred's Case, 9 Co. Rep. 57b, 58a (1610) (finding the building of a pig sty too close to a neighbor's house to violate the neighbor's rights). 75. See, e.g., Wilson v. Smith, 197 S.E.2d 23, 25 (N.C. Ct. App. 1973) ("A way of necessity arises when one grants a parcel of land surrounded by his other land, or when the grantee has no access to it except over the land retained by the grantor or land owned by a stranger."). 76. For instance, regulation that limits the use of property is not considered a "taking" in the United States even if discrete segments of the property rights are essentially removed, such as ability to exploit airspace above land. See Perm Cent. Transp. Co. v. New York City, 438 U.S. 104, 130 (1978). Nor, for instance, has labor regulation been considered to violate fundamental substantive due process rights to property or contract in the United States since 1937. See, e.g., NLRB v. Jones & Laughlin Steel Corp., 301 U.S. 1,49 (1937) (upholding the National Labor Relations Act). 77. See Wilson, 197 S.E.2d at 26; Aldred's Case, 9 Co. Rep. at 58b.

88

The Right to Bodily Integrity

16

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

regulation would promote public health and safety better than criminalization.78 One might respond to this descriptive point about the legitimacy of property regulation by arguing that the body is a particularly special repository of autonomy. On this view, the body is not like other forms of property, and deserves to be protected by a kind of fundamental right to sole dominion that other property does not entail. A strong proponent of liberalism might go even further and argue that the state should not regulate traditional forms of property either: the state should not prohibit me from being a prostitute or from chopping down my trees because both are exercises of my autonomy. But as Part III will show, both of these positions are normatively wrong.

III. WHY DIGNITY, AUTONOMY, AND CAPABILITY APPROACHES TO RIGHTS IN THE BODY ARE NORMAIWELY WRONG A. What's Normatively Wrong with Dignity Many may feel that my descriptive critique of the dignitarian approach to bodily integrity is not enough reason to be against a dignitarian right to bodily integrity. Maybe the fiction of a body with integrity that cannot be intruded on is a good fiction—one that should be promoted as much as possible. Perhaps we should be carving off the body from the environment in which it exists. For example, some argue that it is a good idea to resist technological advances that will blur the lines between bodies and their environments even further, in order to ensure that people continue to think of human bodies and life as sacred. Thus, perhaps we should think of dignity as harmed more severely when the body has the formal legal status of property than when it does not. Perhaps we really should consider the person who sold her kidney to have suffered greater dignitary harm than the person who sold the use of her hands to her employer until they were unusable. Or perhaps we really should consider a prostitute to suffer greater dignitary harm than a person who, as a result of poverty, puts his prosthetic arm up for sale on eBay. In this section, I argue that attempts to resist technological advances and maintain a rigid distinction between humans and property may lead to less, not more, human and social flourishing. Technology that blurs this line holds the potential to improve the lives of those who are sick, injured, or disabled, or those who simply want to improve and modernize their bodies. I also critique the use of dignity as a justification for even more nuanced rights in the body, ones that permit some forms of body cornmodification but not others. The reason is that dignity requires a univer78.

See sources cited supra note 13.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

89

17

sal account of what is, essentially, a human, and what are the components of human dignity.79 Such universal accounts of what a dignified life consists of are likely biased, and therefore carry with them the danger of becoming oppressive. This is not only a problem with using dignity to promote a monolithic privacy like right to bodily integrity, it is also a problem with using dignity to justify even more nuanced rights hi the body. 1. Pluralism Many have an intuition that a right to control one's own body is fundamental to human dignity, human flourishing, or liberty.80 This concept might support the right to protect the body from intrusion, but would encompass no right to mutilate one's own body, to consent to euthanasia, sell one's organs, or otherwise show "disrespect" for one's body.81 The notion that the body has special status is commonly held. For instance, a Department of Health and Human Services task force, in issuing recommendations on organ transplantation, once stated "society's moral values militate against regarding the body as a commodity."82 It went on to cite a report from the Hastings Center that said: The view that the body is intimately tied to our conceptions of personal identity, dignity, and self-worth is reflected in the unique status accorded to the body within our legal tradition as something that cannot and should not be bought or sold. Religious and secular atti-

79. One of the best accounts of this form, and from which we can learn a great deal, is Martha Nussbaum's development and defense of a universal list of basic human capabilities. But her work demonstrates that rigorous attempts to define universal dignitarian human capabilities or rights rely on "intuition," which she acknowledges is subject to "distortion." Our intuitions about what is minimally required for a life with dignity are subject to our own biases. For this reason, Nussbaum is careful to describe the list as contingent and tentative, and also to allow for mechanisms of cultural change that could help us revise the list, such as being able to imagine and reason. MARTHA C. NUSSBAUM, FRONTIERS OF JUSTICE: DISABILITY, NATIONALITY, SPECIES MEMBERSHIP 83, 174-75 (2006). 80. E.g., Vacco v. Quill, 521 U.S. 793, 807 (1997) (clarifying that the right to refuse medical treatment rests in the right "to bodily integrity and freedom from unwanted touching"); Washington v. Glucksberg, 521 U.S. 702, 720 (1997) (citing Rochin v. California, 342 U.S. 165, 172 (1952) (recognizing the right to bodily integrity); Cruzan v. Dir., Mo. Dep't of Health, 497 U.S. 261, 278 (1990) (recognizing "a general liberty interest in refusing medical treatment"); NUSSBAUM, supra note 1, at 78 (including it within her list of capabilities); see also MODEL PENAL CODE § 211.1 (1980) (consolidating battery, mayhem, and assault into a single crime); RESTATEMENT (SECOND) OF TORTS §§ 13,18,21 (1965) (defining battery and assault). 81. E.g., Vacco, 521 U.S. at 808 ("By permitting everyone to refuse unwanted medical treatment while prohibiting anyone from assisting a suicide, New York law follows a longstanding and rational distinction."). 82. Henry Hansmann, The Economics and Ethics of Markets for Human Organs, 14 J. HEALTH POL., POL'Y & L. 57,59 (1989) (internal quotation marks omitted) (quoting U.S. DEP'T OF HEALTH & HUMAN SERVS., supra note 3, at 96).

90

The Right to Bodily Integrity

18

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

tudes . . . make it plain just how widespread is the ethical stance maintaining that the body ought to have special moral standing.83

Many other countries also forbid organ sales.84 But this view loses its appeal quickly when we consider that what one community may find to express a lack of self-respect, another community may find an ultimately fulfilling and meaningful use of the body.85 Changing the shape of one's genitals might seem to some "disrespectful" of the body with which one is born, but for some transgender persons, it is a self-affirming expression of self and identity. Having sex in exchange for money may be experienced as degrading for some prostitutes, but can be a fulfilling career for other prostitutes. For instance, some prostitutes defy the presumption that emotional connections cannot be made through commodified sex, by forming friendships with clients, or having "favorite" clients.86 Which, if any, is most degrading—getting paid to have an advertisement tattooed on one's arm, getting paid to have sex, or getting paid to give a massage? The answer will surely be culturally contingent. Covering one's breasts or hair could be alternately understood as expressing shame or expressing self-respect.87 In a pluralist society, dignitary concerns seem an inadequate justification for forbidding people from commodifying their bodies—they rely on conceptions of human nature or what constitutes a good life that are not universally or even widely shared, such as religious or "intuitionist" conceptions. One of the most famous proponents of this dignitarian approach, Leon Kass, the chair of the President's Council on Bioethics from 20022005, encourages us to listen to the "wisdom of repugnance" in critiquing certain practices as harmful to human dignity.88 Kass has lamented not only the immorality of reproductive technologies, but also the offensiveness of licking ice cream cones in public.89 83. Kevin W. Wildes, Libertarianism and Ownership of the Human Body, in OWNERSHIP OF THE HUMAN BODY, supra note 37, at 143,152 (quoting U.S. DEP'T OF HEALTH & HUMAN SERVS., supra note 3, at 96). 84. E.g., Transplantation of Human Organs Act, No. 42 of 1994 (India); Human Tissue Gift Act, R.S.B.C. 1996, ch. 211 § 10 (Can.). See generally WORLD HEALTH ORG., HUMAN ORGAN TRANSPLANTATION: A REPORT ON DEVELOPMENTS UNDER THE AUSPICES OF WHO, 1987-1991, at 15-26 (1991) (surveying and listing countries that ban organ sales and those that do not). 85. See Wildes, supra note 83, at 147 ("Much of the effort to regulate and constrain the use of the human body is embedded in a moral language of 'sanctity', 'dignity', 'justice', 'integrity', and 'solidarity' that assumes particular moral commitments."). 86. Lucas, supra note 22, at 248,252. 87. See FADWA EL GUINDI, VEIL: MODESTY, PRIVACY AND RESISTANCE 13 (1999) (discussing the evolution of differing views pertaining to veiling practices); cf. CAROLYN G. HEILBRUN, THE EDUCATION OF A WOMAN: THE LIFE OF GLORIA STEINEM, at xviii (1995) (describing Steinem's "feminis[m] in a miniskirt" as a walking "contradiction"). 88. Leon R. Kass, The Wisdom of Repugnance, THE NEW REPUBLIC, June 2, 1997, available at http://www.catholiceducation.org/articles/medical_ethics/me0006.html. 89. LEON R. KASS, THE HUNGRY SOUL: EATING AND THE PERFECTING OF OUR NATURE 148149 (1994): Worst of all from this point of view are those more uncivilized forms of eating, like licking an ice cream cone—a catlike activity that has been made acceptable in informal

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

91

19

Some members of this camp would permit modifications to the body that do not entail the sale of the body, its parts, or uses, such as the free donation of an organ to a sibling in need, or the creation of an animal-human hybrid over which nobody holds intellectual property rights.90 Others would object even to some of these modifications that could not fairly be called "commodification"91 because they involve no economic exchange. But what characterizes this camp is the argument that the root of the right to bodily integrity is a dignitary one. Because people disagree over the contours of dignity, what exactly constitutes an offense against dignity varies widely, and this is why the group contains both moral conservatives and liberals. This debate over whether a change to or use of one's body is selfrespecting appears even when the change is widely thought of as a medical "improvement." For instance, obtaining a cochlear implant that permits the user to hear might seem a thoroughly unobjectionable alteration of one's body to many. But to some members of the deaf community, it can represent a rejection of one's self, as well as one's community—a selling out, if you will, to dominant norms of communication and language.92 Thus, in a pluralistic society, we cannot rest our rights in the body on what actions demonstrate respect for the body and what actions do not. To do so would rigidly fix the definitions of what are appropriate uses and forms of the body. Moreover, hewing to convention on the appropriate use and forms of the body will not only lead to stagnation, it lacks compassion. For instance, in his 2006 State of the Union speech, former President George W. Bush opposed animal-human hybrids as one of many technologies that the religious right fears will blur the line between humans and the rest of the world.93 Even more recently, in March of 2008, the Vatican published a list of seven modern sins that includes genetic manipulation, morally debatable experiments, and violation of the fundamental rights of human nature.94 But what if animal-human hybrids or stem cell re-

America but that still offends those who know why eating in public is offensive. I fear that I may by this remark lose the sympathy of many readers, people who will condescendingly regard as quaint or even priggish the ... view that eating in the street is for dogs. . . . This doglike feeding, if one must engage in it, ought to be kept from public view, where, even if we feel no shame, others are compelled to witness our shameful behavior. 90. For instance, United States law permits voluntary organ donation while forbidding organ sales. 42 U.S.C.A. § 274e(a) (West 2009). 91. See id.; see also sources cited supra note 19. 92. E.g., SOUND AND FURY (PBS 2000) (documenting a deaf child's wish to obtain a cochlear implant in defiance of her deaf parents' wishes). 93. George W. Bush, Address Before a Joint Session of Congress on the State of the Union (Jan. 31,2006) (transcript available at http://www.c-span.org/executive/transcript.asp?cat=current &code=bush_admin&year=2006). 94. See sources cited supra note 19.

92

The Right to Bodily Integrity

20

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

search can be used to alleviate a patient's severe pain?95 Other grounds for opposing these technologies may exist, but a conventionalist's argument from "the wisdom of repugnance"96 is a particularly uncompelling basis in a pluralistic society. Similarly uncompelling is an argument rooted in the desire to preserve categorical distinctions between persons and property, without a theory of why such a distinction is so worthwhile as to overcome the claims of persons who are physically suffering and then* families. Both the kidney seller, who could use compensation to improve her life, and the kidney purchaser, whose health is dramatically improved through transplantation, must be answered to.97 2. Dignity of the Body as a Social Justice Concept? Some argue, in contrast, that compassion actually requires this formalist distinction between people, who are afforded special status, and property.98 On this view, we must hold the line between persons and property fast, as a way of protecting persons with disabilities and other biologically disfavored persons, who might otherwise be deemed not worthwhile. The concern is that such persons would have their lives, security, and other needs "balanced" against other interests, rather than respected as inalienable and non-negotiable rights.99 Life as a person with disabilities, an abnormal person, or even an average person who refuses to bring his or her body into conformance with current cultural norms, would become a "choice" that would not be protected.100 For instance, some argue that treating embryos as mere property could cause the destruction of lesbian and gay persons or persons with disabilities through genetic selection of "straight embryos" or "ablebodied embryos."101 The "gay embryos" or "disabled embryos" could simply be destroyed, as one's property can be destroyed. Or perhaps the "straight, able-bodied embryos" would command a higher price in the

95. Stem cell research is widely discussed for its potential to lead to the development of treatments for diseases, and animal-human hybrids might be used to develop organs for transplantation into humans. See Bagley, supra note 2, at 472,520. 96. See Kass, supra note 88. 97. E.g., Volokh, supra note 4, at 1835 (arguing that forbidding organ sales violates the right to self defense of those who need organs). 98. See Jean Bethke Elshtain, The Body and the Quest for Control, in IS HUMAN NATURE OBSOLETE?: GENETICS, BIOENGINEERING, AND THE FUTURE OF THE HUMAN CONDITION 155, 161 (Harold W. Baillie & Timothy K. Casey eds., 2005). 99. See, e.g., id. at 155-61. 100. Id. at 161 (arguing that parents who chose not to abort children with Down's Syndrome and other disabilities would be viewed as having made a choice to do so that society need not support). 101. See e.g., Jennifer S. Geetter, Coding for Change: The Power of the Human Genome to Transform the American Health Insurance System, 28 AM. J.L. & MED. 1, 27 (2002) ("The very phrase 'wrongful birth' suggests that the birth of the disabled child was wrong and should have been prevented." (internal quotation marks omitted) (quoting Taylor v. Kurapati, 600 N.W.2d 670, 68891 (Mich. Ct. App. 1999))).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

93

21

market than "gay embryos" or "disabled embryos," creating a significant status harm for lesbian and gay persons and persons with disabilities.102 In another example, some egalitarians argue that commodification of the body could permit economic disparities to widen between those who can afford financially valuable upgrades to their bodies and those who cannot.103 Perhaps an upgrade to the body would give a person more abilities—such as strength or intelligence—that would be a great advantage in the employment market. Those who could not afford such upgrades would find it increasingly difficult to earn a good wage, once forced to compete with those whose greater wealth, or whose parents' greater wealth, afforded them the opportunity to buy into privately owned body modifying technology. Thus, some members of the dignitarian camp would forbid property rights hi embryos, in order to prevent perhaps their destruction and likely then* sale on the basis of then* genetic content. Others might forbid employers from discriminating against those who fail to get certain upgrades to their bodies. The idea is that the special status of the natural human body must be maintained to prevent some bodies from being worth less than other bodies; otherwise our impulse is to require "natural" bodies to change, rather than changing the environment and society that is inhospitable to them. In other words, our impulse to accommodate different bodies, especially those that are disabled, would be hindered.104 However, intuitive ideas about what is natural and what is not do not necessarily lead to protected bodies because aspects of our environment may feel intuitively natural. For instance, the existence of stairs in many buildings and lack of wheelchair ramps may seem a natural, given state of affairs. It took years of activism and scholarly writing by disability advocates to interrogate the medical model of disability and instead promote the "social model" of disability, under which we can distinguish between physical impairment and the social conditions, such as the use of stairs rather than ramps, that turn an impairment into a disability.105 As 102. Aside from ignoring that cultural pressure to perform a heterosexual identity is, and in many cultures has been, enough to crush and subordinate lesbian, gay, and bisexual practice and identity, this argument also fails to recognize that some persons would prefer to have gay children or to be gay, and would choose those options. See generally Eve Kosofsky Sedgwick, How to Bring Your Kids up Gay, 29 SOC. TEXT 18 (1991). 103. See HUGHES, supra note 45, at 130-31 (describing the Center for Genetics and Society's argument that cloning and the creation of inheritable genetic modifications will lead to such a situation). 104. E.g., Elshtain, supra note 98, at 163 ("[S]urroundings in which bodies are situated fades as the body gets enshrined as a kind of messianic project."). 105. See Corker & Shakespeare, supra note 42, at 3 (describing the shift from the medical model of disability to the social model, in which activists raised awareness of the fact that impairment alone does not cause disability, but rather social and economic conditions overlaying impairment).

94

The Right to Bodily Integrity

22

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

another example, a person with a severe allergy to unprocessed nuts, or to locally native plants, could easily be subject to a belief that his or her body is improperly adapted to the "natural" environment, if we simply rely on intuitive ideas about what is natural. And lesbian, gay, and bisexual people have long been accused of having "unnatural" sexual desires because same sex sexual activity does not "naturally" lead to reproduction. Thus, what sexual minorities do with their bodies is often left unprotected by the appeal to intuitions about nature. And indeed, it is not clear that in all cases changing the environment is necessarily more compassionate than changing bodies. It may sometimes be better to alleviate suffering by changing what we have previously thought to be "the central core of our humanity,"106 rather than by changing the environment. A formalist approach that reveres the organic body or listens to the "wisdom of repugnance" does not adequately allow for this, and can therefore seriously harm the rights of those with different bodies, too. For instance, transgender persons who choose to obtain body modifying surgery or engage in body disguising dress practices are changing then* bodies, rather than the environment, both of which are probably contributors to gender identity disorder ("GID").107 It is unclear why the insistence that we change the environment, rather than permitting transgender persons to change their bodies and clothing, is a superior response to GID. This is especially so when we realize that awareness of and respect for the bodies of transgender persons may contribute to positive changes in the cultural environment. Transgender persons who obtain body-modifying surgery or dress in a manner that obscures parts of the body do not necessarily accommodate or reinstantiate social constructions of gender—these practices can destabilize those constructions.108 Questioning gender constructions and stereotypes can then lead to changes in the environment and social order, rather than stubborn refusals to change the environment in which our bodies exist. As an example of where this desire to glorify and dignify the natural body can lead, we can look to Jean Elshtain. Elshtain at times appears to be a defender of those who are different, such as persons with disabilities and sexual minorities, but she also expresses concern with a society that might no longer feel disgust towards a human body "riddled with pieces of metal."109 Yet, that body riddled with metal may be a person with disabilities who, like all of us, is using the available technology to live the 106. Elshtain, supra note 100, at 167. 107. I use the term GID because it is a well-recognized term, not to express any agreement with the medical characterization of many transgender persons as having a "disorder." See Dean Spade, Resisting Medicine, Re/modeling Gender, 18 BERKELEY WOMEN'S LJ. 15,19-21 (2003). 108. Judith Butler, Imitation and Gender Insubordination, in THE LESBIAN AND GAY STUDIES READER 307,313-14,318 (Henry Abelove et al. eds., 1993). 109. Elshtain, supra note 100, at 167.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

95

23

best life possible. Alternately, it might be a person who elects to have numerous piercings as an important religious or identity related practice. Revulsion towards such a body doesn't seem compassionate at all. I believe the worth of different bodies, and the rights of persons with different bodies, is better located in the public's interest in people with different bodies as a means of facilitating cultural change, rather than in a naturalist or intuitionist account of "what is a human." For instance, we can value the bodies of persons with hearing impairments by looking at the richness and beauty of sign language, rather than by valorizing the "natural" state of the impairment and rejecting the wishes of the deaf child who desires a cochlear implant.110 This way of valuing different bodies—based on their important place in cultural evolution— might work better for persons with disabilities because it recognizes the fact that people are constituted by and within technology. It is persons with disabilities for whom this fact makes a great deal of material difference. In contrast, the naturalist approach might lead to less support for welfare rights to technology that would assist persons with disabilities. Why would a government-funded health care system pay for a cochlear implant, or for a wheelchair, if deafness or inability to walk were revered as "natural"? The naturalist account is of course similarly dangerous for persons with minority sexual identities. What is "naturally human" or "intuitively" beautiful or repulsive is always contested, and plenty of persons who promote this formalist approach also promote the subordination of sexual minorities and women.111 If we reflect on how societies have historically treated sexual minorities and persons with disabilities, the "wisdom of repugnance" does not, in my view, seem to be the safest approach for these groups. Abandoning a naturalist or intuitive source of rights hi favor of this approach, geared at social and cultural change, need not mean that people's bodies are only worth something when they have the capacity for rational, political engagement. Instead, we can recognize that bodies are sites of identity and cultural performance, and are therefore worth something to others, even when they are mentally or otherwise disabled in a way that makes traditional political participation impossible. People can be loved, be part of society, and be part of our culture without being 110. In the documentary film Sound and Fury, a young child's deaf parents forbade her from receiving a cochlear implant, after much debate with other members of the deaf community and both hearing-impaired and non-hearing-impaired family members. They determined that the implant would be a rejection of the rich and valuable deaf community they were a part of and that was often discriminated against unjustly. SOUND AND FURY (PBS 2000). While views on the parents' decision may vary, there is something tragic in the circumstances that led to the parents being unable to value both the deaf community and their daughter's desire to experience what hearing is like. 111. E.g., Leon R. Kass, The End of Courtship (pt. 1), BOUNDLESS, Oct. 13, 2005, http://www.boundless.org/2005/articles/a0001154.cfin (arguing that women should be modest and mothers).

96

The Right to Bodily Integrity

24

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

part of our politics.112 Thus, we don't need an organic account of who is naturally a human in order to value many different lands of bodies. We can recognize the importance of embodiment without revering the types of embodiment we are used to, or responding with disgust to the types that we are not. B. What's Normatively Wrong with Autonomy I have argued that the property-like approach to bodily integrity is descriptively wrong about property—fundamental property rights are not violated merely because they are heavily regulated. But as noted in Part II, some might argue that normatively, we should protect either property rights in the body or even all property rights against regulation, as a component of autonomy. In this section, I argue against the use of autonomy as a basis for property-like fundamental rights in the body or any other form of property that would trump typical political concerns such as public health or even parentalism. One might argue from an autonomy or personhood standpoint that we should carve out a property-like right in our bodies, marked off by the physical borders of the body. This right would be different from other property rights in that it would be freer from restraints on alienation and would truly serve as a trump of typical political concerns driving regulation. The idea is that the body, more than property, is particularly fundamental to personhood or autonomy.113 But property, too, can be a crucial part of personhood and autonomy, much more so than certain body parts. Margaret Radin, for instance, has persuasively argued that certain forms of property are properly understood as personal hi nature, such as wedding rings or houses.114 The clothes I choose to wear may be a more important component of my personhood than my fingernails, as another example. Regulation of property can even impact personhood via the body itself. This occurs whenever property is tied to the use and experience of one's body. For instance, if the state forbids the sale of corsets, makeup, and high heels, it infringes on the manner in which I make my body culturally visible and the manner in which I physically experience my body. The same is true when the state regulates sex toys and medical devices. Food and drug regulation limits what we can ingest, and the Controlled

112. See MARTHA C. NUSSBAUM, FRONTIERS OF JUSTICE: DISABILITY, NATIONALITY, SPECIES MEMBERSHIP 96-106 (2006). 113. Cf. Jed Rubenfeld, The Right of Privacy, 102 HARV. L. REV. 737, 800 (1989) (arguing that control of the body is "formative"). 114. See Radin, Property and Personhood, supra note 20, at 959-61.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

97

25

Substances Act can determine whether someone's body exists in pain or not.115 By arguing that the body is not a special repository of autonomy or personhood, I do not deny that the body may have a special relationship to autonomy, stemming from the cognitive force that being physically controlled can have. It may be impossible in many circumstances to mentally "overcome" experiences like pain or physical restriction, and therefore control of another's body may amount to the destruction of that person's autonomy116 in a way that control of their property could not compare. Torture has, for this reason, been described as "unmaking the world" of the victim.117 It is easy to see, with this in mind, why one concerned with autonomy would argue that the government should not be permitted to control the individual's body in a manner that is cognitively overpowering, such as by forcing the individual to endure pain, requiring the individual to experience pregnancy (or prohibiting the individual from having such an experience), or prohibiting the individual's use of psychoactive drugs. But the claim that regulation of kidney sales, prostitution, manual labor, and other forms of body commodification interferes particularly egregiously with autonomy merely because these activities involve parts or uses of the body would not be supported. An environmental regulation that prevents me from chopping down trees on my land and selling them is no less cognitively overpowering than a public health regulation that prevents me from selling my kidney or engaging in prostitution. Even though having a kidney removed or engaging in sex might have cognitive effects that an individual desires and that cannot be duplicated in any other way, a prohibition on engaging hi these activities for money doesn't prevent the individual from having those experiences at all: the individual can still give the kidney away for free, or consent to sex for free. One might respond to this with the even stronger libertarian view that all property rights should trump typical regulation, whether property rights in the body or not. The problem with this view normatively is that commodification itself, whether of the body or other material, is not en115. See Gonzales v. Raich, 545 U.S. 1,7 (2005) (noting, in the context of a case upholding the Controlled Substance Act's prohibition on possession of marijuana as a valid exercise of Congress's commerce clause authority, that plaintiffs "physician believes that forgoing cannabis treatments would certainly cause [her] excruciating pain and could very well prove fatal"). 116. Rubenfeld, supra note 113, at 788-89: Yet power need not be directed at the undeveloped mind to have this effect; it may also do so if directed at the fully-developed body.... Indeed, bodily control may be the more effective medium to the extent that thought cannot, as it were, meet such control head on, as it might when confronted by an idea that it is told to accept.... [I]ts effect can be formative, shaping identity at a point where intellectual resistance cannot meet it. 117. See ELAINE SCARRY, THE BODY IN PAIN: THE MAKING AND UNMAKING OF THE WORLD 37-38 (1985).

98

The Right to Bodily Integrity

26

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

tirely unproblematic for autonomy, as choices can be coerced not only by the state but also by private actors. If the state attempts to promote autonomy by refraining from all regulation of what can and cannot be done with the body altogether, those with private sources of power will be free to interfere with the choices of others. When we live as members of a society, our choices concerning our bodies will never be absolutely "free," in the sense that they are uncoerced, uncontrolled, or undetermined by others.118 For instance, when a person has a disability and obtains prosthetics to assist with the disability, this is in part because the person's body has been socially constructed as disabled. If we all used sign language to communicate, fewer deaf persons would desire cochlear implants. In another example, if we failed to classify persons on the basis of the shape of their genitals, fewer transgender persons would desire genital surgery. If actresses didn't receive massive sums of money for looking eternally young, would so many of them "choose" to get injected with Botox? Someone with a great deal of economic power can offer money to an employee in exchange for the performance of a job, such as manual labor, that eventually damages the employee's body.119 Or, someone who owns many buildings will, through her choices about whether to install wheelchair ramps, influence the mobility of many persons with disabilities. Markets that reward attractiveness can incentivize cosmetic surgery.120 Even the most typical forms of employment, such as waitressing or bartending hi a "uniform of makeup,"121 raise concerns about whether selling control over one's body hi this way is a choice made "freely."122 And does someone have sufficient autonomy if he desires a wheelchair for basic mobility, but cannot afford one and is not provided one by his society?123 In other words, persons are unavoidably embodied in the context of their environment, an environment largely made up of legal relationships of property and contract.

118. See MICHEL FOUCAULT, DISCIPLINE AND PUNISH: THE BIRTH OF THE PRISON 209-222 (Alan Sheridan trans., Vintage Books 2d ed. 1995) (1977); see also Rubenfeld, supra note 113, at 770-81 (1976) (making this point with respect to sexuality and Citing Foucault's The History of Sexuality). 119. See supra text accompanying notes 36-39. 120. See supra note 42 and accompanying text. 121. Jespersen v. Harrah's Operating Co., 392 F.3d 1076,1084 (9th Or. 2004), ajfd, 444 F.3d 1104 (9th Cir. 2006) (en bane). 122. See supra note 40 and accompanying text. 123. See Convention on the Rights of Persons with Disabilities, G. A. Res. 61/106, arts. IV, XX U.N. Doc. A/RES/61/106 (Jan. 24, 2007) (stating obligations of parties to promote research into and affordable access to aids for persons with disabilities, including mobility aids); cf. Dean Spade, Documenting Gender, 59 HASTINGS L.J. 731, 782-91 (2008) (documenting the double bind created by, on the one hand, the exclusion of gender confirming medical care such as sex-reassignment surgery or hormone therapy from Medicaid and other state funded health coverage, and, on the other hand, state demands that transgender persons obtain such treatment in order to legitimize their status and be appropriately gender classified).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

99

27

In critiquing the notion that inviolable private property-like rights best promote autonomy, I am not advocating the eradication of private property. That, too would threaten autonomy, since state coercion is no less a form of coercion than economic coercion. Moreover, even without economic and state coercion, social and cultural coercion remain. For instance, one might obtain cosmetic surgery even in the absence of financial incentives to do so because one desires an intimate relationship, and cultural norms may prefer people with certain kinds of bodies. Or, one may be pressured by family members to donate a kidney to a sibling. Thus, there is no mechanism by which we can "maximize" autonomy over the body. All we can do is make decisions about where to allocate the coercive power that will inevitably influence individual choices concerning the body.124 We might choose to allocate all that power hi totally unregulated private hands, through a strict libertarian "no state action" doctrine. Or, we might choose to allocate that power in the hands of those with cultural capital, while forbidding or limiting its exercise in economic transactions. Thus, we might limit rights to contract away one's control over one's body, while permitting families and other social groups to coerce individuals into giving up that control. The problem with the autonomy argument is that it doesn't help us choose from these alternatives. We cannot compare all allocations for "levels of autonomy." Some would even say that the notion of autonomy is itself essentially an illusion for anyone who lives in a social context.125 But even if we do not take this strong a position in critiquing autonomy, it is still a poor basis for a right hi one's body that trumps typical regulation. C. The Capability Approach—Combining Dignitary Approaches with Liberal "Choice" There are some essentially liberal justifications of human or fundamental rights that acknowledge the problem of private coercion. These accounts therefore reject the libertarian approach in favor of one that might require positive efforts to promote truer autonomy. In this section, I consider and reject a strong example of such an account as an alternate way of justifying human rights in the body. Martha Nussbaum's capability approach, drawing on Amartya Sen's capability approach to measuring welfare,126 uses an intuitive approach to reach a list of "capabilities" she argues are essential to human dignity,127 and she includes bodily integrity in this list.128 However, she 124. See FOUCAULT, supra note 118, at 194. 125. Id.; see also MICHEL FOUCAULT, THE HISTORY OF SEXUALITY 159 (Robert Hurley trans., Pantheon Books 1978) (1976) ("The irony of this deployment is in having us believe that our 'liberation' is in the balance."). 126. See generally AMARTYA SEN, DEVELOPMENT As FREEDOM 131-37 (1999). 127. NUSSBAUM, supra note 1, at 74-75. 128. Id. at 78.

100

The Right to Bodily Integrity

28

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

would not require one to maintain one's own bodily integrity, but would only require, in a liberal way, that each person has the capability to do so.129 Moreover, she includes holding property on the list of capabilities.130 Thus, her approach to rights over one's body combines elements of the traditional liberal autonomy idea with the intuitionist dignity idea.131 However, what distinguishes Nussbaum from a libertarian is that for this capability to be provided to all, in the face of the problem of private coercion and control described above, positive government action may be necessary. As a result, the capability for bodily integrity will in many cases need to come at the expense of some portion of the capability to hold property or obtain employment. It wouldn't make sense to "trade off these two important and essential capabilities against each other, under the approach,132 but it is also true that not all the capabilities can necessarily be maximized simultaneously. They are instead treated as minimum thresholds—thresholds that incidentally do not appear to be met for many of the world's citizens. Thus, one capability might be reduced in order to promote another, as long as one did not reduce the capability below the minimum threshold. This approach is intended to be flexible,133 which is part of why it is very coherent, as well as compassionate and realistic in a way that neither the "wisdom of repugnance" approach nor the libertarian approach is. However, the capabilities approach does not seem to help us answer the question of when freedom of contract or property must be regulated in order to provide and promote the capability for bodily integrity, and when it should not be. The purpose simply doesn't seem to be to provide a principle for deciding that question. Moreover, the justification for regulating contract, property, and other forms of individual choice stems, at bottom, from intuitions. Nussbaum's approach is self-consciously "intuitionist."134 Thus, despite her use of "capabilities," rather than fixed requirements for a life worth living, this soft liberal approach still takes admittedly biased intuitions and uses them universally135 as a justification for regulating behavior. Nuss129. See id. at 87. 130. Mat 80. 131. Mat 91. 132. See NUSSBAUM, supra note 79, at 167. 133. Mat 78-79: I consider the list as open-ended and subject to ongoing revision and rethinking, in the way that any society's account of its most fundamental entitlements is always subject to supplementation (or deletion). 1 also insist. . . that the items . . . be specified in a somewhat abstract and general way, precisely in order to leave room for the activities of specifying and deliberating by citizens and their legislatures and courts. 134. Id. at 174-75. 135. Id. at 78 ("The capabilities approach is fully universal.... The approach is in this way similar to the international human rights approach "). It is important to note, though, that Nussbaum does not argue that the universal nature of the list "licensefs] intervention with the affairs of a

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

101

29

baum is laudably cautious about all this, and indicates for this very reason that the list of capabilities must be updated periodically, but the strong risk of biased intuitions being used to justify oppressive regulation still remains.

IV. WHAT THE BODY HAS TO Do WITH FUNDAMENTAL RIGHTS Does all this critique mean that human rights have nothing to do with bodies? Do rights have nothing to do with controversial questions such as whether to permit prostitution, whether the state may force vaccination, or whether organ selling should be permitted? In other words, should all these questions only be resolved on the basis of typical political and welfare concerns, with no rights "trumping" those concerns? Having critiqued the autonomy, dignity, and capability approaches to resolving these questions, in this Part I propose a different ground for rights in bodies. However, this justification would not support a right to "bodily integrity," alienable or not. A. Proceduralist Theories of Rights Autonomy, dignity, and even compelling combinations of such concepts are not the only reasons in which we can ground fundamental rights. Rights can also be vehicles for promoting social and cultural change—ways of helping us update our intuitions. Free speech rights, for instance, have been promoted on this basis.136 While laws, social norms, and cultural values will always determine what choices are available to us,137 we can use rights as vehicles for ensuring that those norms can change, and that their evolution is not determined solely by orthodoxy.138 Such a conception of rights would promote speech rights, for instance, on the proceduralist theory that this contributes to a democratic culture, or even to a search for truth,139 rather than on an autonomy theory. This might lead to obligations that the government subsidize the speech of those with less capital, or limit freedom of contract so as to protect employee and tenant speech as against the property rights of employers and landlords.

state that does not recognize them." Id. at 80. She states that "military and economic sanctions are justified only in certain very grave circumstances." Id. 136. See ALEXANDER MEKLEJOHN, FREE SPEECH AND ITS RELATION TO SELF-GOVERNMENT 26 (1948) (arguing that access to unconstrained information and ideas is necessary to an informed populace and the functioning of democracy). 137. See Kahan, supra note 14, at 115 (arguing that even when consciously justified in secular, pluralist terms, laws will often be driven by the expression of cultural values and repression of deviant moral values). 138. Ramachandran, supra note 9, at 18. 139. D.A. LLOYD THOMAS, IN DEFENCE OF LIBERALISM 36 (1988) ("The case for a liberal set of individual rights does not rest on the assumption that we already know what is intrinsically valuable. Rather, it rests on a plausible claim about how it is possible to have better formed beliefs about what is valuable.").

102

The Right to Bodily Integrity

30

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

Of course, law cannot eradicate social norms, and we probably wouldn't want it to. However, it is important that those norms be capable of changing. In order for culture to be capable of change, individuals and subcultures must be better empowered to challenge and contribute to the construction of culture: some level of cultural velocity must be present.140 The goal of maintaining cultural velocity shares similarities with Jack Balkin's thesis that in addition to a democratic political system, we need a democratic culture.141 Protecting the ability of individuals to form affiliations, beliefs, and values—to engage hi making culture—is important, I argue, not because those abilities are crucial to autonomy, but rather because those abilities contribute to cultural exchange and evolution.142 B. Cultural Velocity and Identity What I add to this conception is the view that identity is a precursor to cultural and political meaning making. I define identity as the particular values, beliefs, and aspects of ourselves that we deem so important we consider them self-defining. "Our aversions, desires, beliefs, and choices all make up our identity, but our identity in turn then affects our aversions, desires, beliefs, and choices."143 "Even when an aspect of identity seems 'unchosen,' such as a biological sex or an ethnicity, we still choose, albeit sometimes within very strong and other times within very weak constraints, whether that 'immutable' trait will be part of our identity."144 Although those choices will always occur within constraints, law can carve out some space for the exercise of agency hi the construction of identity. In this way, identity can be self-defining in the good sense of a set of values and practices that one holds dear (but nevertheless could be different), rather than self-defining in the bad sense of a set of stereotypes about a group that are resistant to change. Why would we want to promote diversity and reformability of identity? Because identity 140. The idea of cultural velocity as a ground for deriving countermajoritarian rights shares similarities with a consequentialist argument made by David Lloyd Thomas in In Defence of Liberalism. See id. Thomas defends liberalism on utilitarian grounds, but on a unique form of utilitarianism that he calls "experimental" utilitarianism. He rejects traditional utilitarianism because it would require defining what is of utility—what is good, or of value, and he argues that we do not know the answer to that question. However, he argues that we can defend those liberal rights, which would contribute to discovering what is of value, by permitting experiments, in a sense, in what should be valued. Id. at 36-37. In a future piece, I will more thoroughly explore the concept of cultural velocity as a justification for human rights more generally. For purposes of this article, however, it is sufficient to note that such a concept could explain or justify rights in bodies, but not rights over the "integrity" of bodies. 141. See Jack M. Balkin, Digital Speech and Democratic Culture: A Theory of Freedom of Expression for the Information Society, 79 N.Y.U. L. REV. 1, 3 (2004). 142. See Ramachandran, supra note 9, at 31-33. 143. Mat 32. 144. Id. For a similar conception of identity as "choice" rather than as "discovered" fact, see AMARTYA SEN, THE ARGUMENTATIVE INDIAN: WRITINGS ON INDIAN HISTORY, CULTURE AND IDENTITY 350-52 (2005).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

103

31

is determined in part by cultural norms, but it is also a ground from which to rally for changing those norms.145 We cannot ensure total "freedom of identity" or "freedom of personhood" for the same reasons we cannot maximize "autonomy." Such freedom is to some extent an illusion, given that even our physical bodies are constructed in part by their social context. Our choices are heavily constrained. But in the face of those constraints, we often see resistance. Sexual minorities, racial minorities, disability activists, and those excluded from aristocracy and nobility are just a few examples of persons who have engaged in culture wars, perhaps not securing themselves "liberation,"146 but certainly moving culture in radical ways. This is one of the reasons often given for protecting speech rights—such rights facilitate that cultural and political change. What is often neglected, though, is that resistance to current cultural norms need not take the form of traditional political activism, speech, and interest group formation. Certain identity practices, such as dress, sexual practice, speech, mannerism, body modification, and the like, can themselves be subversive, destabilizing acts that have cultural effects.147 Judith Butler has described drag as such a practice, calling it "gender insubordination."148 These culturally disrupting, identity disrupting practices have been valorized by postmodernists and queer theorists, though then* work to do so has often seemed too "academic," not having any practical import.149 Part of what makes this celebration of subversion seem pointless is that the prescription to disrupt identity or subvert cultural norms has limited use for someone who will lose her job, be kicked out of school, or sent to jail for doing so.150 That is where legal rights come into play. Law can carve out some space for individuals, subcultures, families, and other groups to form different, challenging identities, and even reform them, yet still have a job, shelter, and other needs met that would permit participation with the broader culture. In this way, rights can be used to ensure that some level of cultural velocity is maintained. 145. Ramachandran, supra note 9, at 93. 146. See FOUCAULT, supra note 118, at 289. 147. Cf. Judith Butler, "Appearances Aside," 88 CAL. L. REV. 55,63 (2000). 148. See Ramachandran, supra note 9, at 22 (citing Butler, supra note 108, at 307). 149. As Seidman has explained in an illuminating history of queer theory's development, "[t]o the extent... that poststructuralist perspectives ... [has become] a politics of the disruptive gesture, they lack coherence." STEVEN SEIDMAN, DIFFERENCE TROUBLES: QUEERING SOCIAL THEORY AND SEXUAL POLITICS 136 (1997). As he has also noted, "Underlying this politics of subversion is a vague notion that this will encourage new, affirmative forms of personal and social life, although poststructuralists are reluctant to name their social vision." Id. at 134. 150. See Butler, supra note 147, at 63: For this challenge to take place, it must be possible for a person whose appearance calls the category of the person into question to enter into the field of appearance precisely as a person [A] power that is 'had' to the extent that such a person is not first defeated by the powers of discrimination.

104

The Right to Bodily Integrity

32

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

C. Applying Proceduralist Rights in Practice Of course, many behaviors are a part of identity formation and reformation. Dressing a particular way is part of identity formation and reformation, but so is smoking, reading certain magazines, speaking in particular dialects, and so on.151 Law cannot protect the freedom to engage hi all such behaviors, especially if we want law to protect these behaviors not just against the state, but to also positively regulate employers, landlords, and other private actors who would use their economic power to direct these behaviors. Thus, although the proceduralist principle of promoting cultural velocity represents a non-intuitionist, consequentialist ground for recognizing certain rights, a practical application of this principle to create actual legal rights must depend on cultural context.152 We will have to choose some identity formative behaviors to protect legally. In many societies, freedom of speech will be a sensible right to carve out as a means of promoting cultural velocity. I have argued that freedom of dress in the United States is also a sensible right to carve out, in part because of the unique way in which dress is experienced as both social and deeply personal, experiences that are historically and culturally contingent.1531 argued that it even ought to be protected to some degree against private regulation, such as hi the workplace. How that protection could be functional in the context of American capitalism of course also required attention to the cultural and political context. Thus, a relatively weak "reasonable accommodation" framework was what I proposed.154 But hi a society hi which physical appearance is not a particularly common site of identity exploration and formation, a site that is frequently experienced as uniquely personal or physical in nature, for example, it might not make sense to recognize a freedom of dress. Or, hi particular professions, such as modeling and acting, it might also not make sense to recognize a freedom of dress.155 Once rights that promote cultural velocity are fleshed out in this way, with an eye to the particular context, one might question how this differs from many modern forms of liberalism, such as Martha Nuss151. See Ramachandran, supra note 9, at 25, 33. 152. C/. Angela R. Riley, Good (Native) Governance, 107 COLUM. L. REV. 1049,1078 (2007). Riley has argued that good governance need not look like liberal democracy in every cultural context, but has still articulated some core components of good governance that are broadly applicable to many sovereigns, such as the ability to dissent and the ability to exit. Id. at 1061-80. The cultural velocity principle would likely result, in virtually every society it were applied to, in protection of the formal ability to dissent and to exit. 1 believe, however, that these formal abilities would rarely be quite enough to ensure a significant amount of cultural velocity—the amount required to ensure that a culture can evolve and meet new challenges. Room to develop the kinds of different identities and affiliations that lead to the desire to dissent and exit is required, in my view. 153. See Ramachandran, supra note 9, at 25. 154. Mat 61. 155. In fact, I proposed a categorical statutory exception for these professions. Id. at 63.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

105

33

baum's intuitionist concept of capabilities. Her approach also varies based on the particular context, and it includes capacities for mental and social development that might produce very similar results to the cultural velocity approach's concern with identity formation and reformation.156 One might argue that by using culturally contingent facts, such as the importance of appearance manipulation to identity formation in the United States, I have imported what amounts to an intuitionist approach through the back door. The important difference is the grounds from which I draw the need to protect identity formation. I draw not from intuitionist or dignitarian grounds, nor from an autonomy ground, but from the consequentialist ground that cultural velocity is of procedural value in all cultures because it helps secure the ability to adapt, whatever one's view of a good life is. This means that claims about what will best promote cultural velocity are empirically falsifiable. If I argue for a legal protection of dress in the form of a right based on the culturally contingent fact that dress is an important site of identity formation, and dress loses this cultural salience, I would have to change my conclusion.157 If it turns out that protecting dress in the form of a right hinders, rather than promotes, cultural velocity, I would also have to change my conclusion. What rights we protect through an application of the cultural velocity approach will therefore change when cultural facts change, when scientific understandings change, and when technological advancements change. Intuition, on the other hand, is by definition slow to change. Intuitions might be formed through repeated observations of the world,158 or through a complex set of cultural meanings,159 or both. But however they are formed, intuitions are by definition those beliefs that have become "immediate," and involve "knowing or sensing without the use of rational processes."160 They are therefore resistant to challenges from empirical evidence.161

156. NUSSBAUM, supra note 1, at 78-79 (including "senses, imagination, and thought" on the list of capabilities, as well as "practical reason"). 157. In fact, it is entirely within the realm of possibility that I will be forced to change my conclusion about freedom of dress within my lifetime. Because working from home is becoming more and more common, people are spending less time interacting with each other visually, and more time online. If this trend develops dramatically, the importance of dress both as a means of forming an identity, and as an impetus of cultural velocity, might diminish in the future. 158. See Christine Jolls, Cass R. Sunstein & Richard Thaler, A Behavioral Approach to Law and Economics, 50 STAN. L. REV. 1471, 1477-78 (1998) (describing the use of mental heuristics as an example of bounded rationality). 159. See Jerry Kang, Trojan Horses of Race, 118 HARV. L. REV. 1489,1508 (2005) (describing racial schemas, or meanings, as developing not merely in response to data perceived by one who adopts the schema, but also growing out of complicated cultural meanings). 160. AMERICAN HERITAGE DICTIONARY 919 (4th ed. 2000). 161. See Jolls et al., supra note 158, at 1477-78; Kang, supra note 159, at 1508.

106

The Right to Bodily Integrity

34

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

D. Cultural Velocity and the Body A cultural velocity approach seeks to protect diverse formations of identity, but of course many behaviors are related to identity formation. No society can protect all in the form of a legal right. We will have to protect those areas of behavior which are most commonly culturally meaningful, or which are unique in other ways that make them convenient to carve off from other behaviors hi the form of a right. Do reasons such as this exist to carve off legal rights protecting control over one's body? 1. The Body Is Political The body is the site of our coming into being socially, and in the United States, as well as hi many societies, appears to be a particularly common site of identity exploration, performance, and formation. I am not arguing that the body is socially or culturally important in any "natural" or "essential" way. The argument here is decidedly not an argument that treats the body as sacred, natural, and immutable.162 Nor is it an argument that treats the body as distinct from and unaffected by the external world and culture. Indeed, I am positing that the body is not sacred, is deeply alterable, and that "natural" and "unalterable" attributes of our bodies—such as the color of our skin, the shape of our genitals, the color of our eyes, and the texture of our hairs—may be no more important to many of us than "artificial" and "alterable" aspects of our bodies, such as our tattoos, piercings, jewelry, clothing, dyed hair, braided hair, hip implants, or canes.163 Rather than treating the body as a temple, I am recognizing its inescapable role—however historically, culturally, or politically contingent—in our experience of self. I recognize that the body may hold no more inherent, acontextual value than chattel. This is precisely why I argue that we should not create a "right in the body" that rests on a formal separation between persons and property, privileging outdated constructions of a biological or "natural" body. On the other hand, the body's manipulation and alteration as an identity formative practice has become widespread. The body and the world around it have begun to bleed into each other: extreme body mod162. See Shell, supra note 3, at 333-34, 345^47 (discussing Kant's "concept of human dignity" and bioethics in stem cell research). 163. In fact, the distinction between the natural or immutable and the artificial or choice-based aspects of our bodies is a slippery one. Skin color, genital shape, eye color, and hair texture are all alterable, with varying levels of effort. Body weight is alterable, but sometimes only with great effort and social support. Tattoos are close to unremovable. Hip implants are removable, but only at great medical cost to those who have them, and once implanted, they are internal to the owner. Are scars from accidents "natural," or "artificial"? What about scars that are deliberately obtained as a form of cosmetic body modification? Scars that result from surgery? Does it matter if the surgery was defined as "elective" or "medically necessary"? Whose definition for those categories should we use?

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

107

35

ification is on a more visible rise, clothes and other objects seem more and more like parts of our bodies and extensions of ourselves, transsexual persons' alterations of their gender are more and more visible, some Asian Americans have opted for eyelid surgery, and Michael Jackson is widely thought to have changed his skin color. And yet, all these trends don't seem to represent a rejection of the body as having any importance at all. These are not even trends toward the soul and mind taking precedence over the body. If transsexual identity were about transcending the importance of genital shapes, then why would so many transsexuals endure the oppression they endure, spend the money they spend, and enter into complicated relationships with the medical establishment to change that which doesn't matter—the shape of one's genitals? Rather, these manipulations, alterations, adornments, and extensions of our bodies themselves carry a great deal of meaning to most of the people engaged in them.164 This need not be the case in some science fiction world of the future, and it need not be universal. However, the fact that the meaning of these body manipulations is contingent on a social and cultural context makes them no less foundational a component of identity. It does, however, raise the question of whether the natural body actually makes sense as a repository of special legal status. If we are accounting for the frequency with which the body appears to play some especially important role in identity formative practices, mapping the borders of a legal right precisely onto the physical borders of the "natural," human body does not make sense; for it is often "artificial" and "elective" manipulations and adornments to the body that are identity performative. There are many activities that are commonly experienced in terms of their physicality, activities which are experienced as manipulations of the body, but which do not involve alteration of the natural, biological, integrated body. For instance, American feminists who argued for the right of women to wear "sensible clothes," at the same time they argued for the rights of women to vote and have jobs, did so not just because the clothes that women were coerced to wear held a political meaning that subordinated women, but also because the clothes were physically restrictive. Skirts and petticoats were experienced as a physical restraint on women.165 On the other hand, those who militate for freedom of speech have rarely done so hi terms of the right to control the air coming in and out of their lungs and the movements they make with their mouths, de164. Ramachandran, supra note 9, at 39. 165. See KARLYNE ANSPACH, THE WHY OF FASHION 329-30 (1967) (describing the Bloomerism movement to replace skirts with pants); CHARLOTTE PERKINS OILMAN, The Force Called Fashion, in THE DRESS OF WOMEN: A CRITICAL INTRODUCTION TO THE SYMBOLISM AND SOCIOLOGY OF CLOTHING 107, 116-17, (Michael R. Hill & Mary Jo Deegan eds., 2002); CHARLOTTE PERKINS OILMAN, Hope and Comfort, in THE DRESS OF WOMEN, supra, at 131, 133^1 (discussing the oppressive nature of fashion).

108

The Right to Bodily Integrity

36

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

spite the fact that these behaviors arguably involve the body more intimately in a physical sense, by making use of its internal organs. Similarly, contracting oneself out for arduous physical labor is often experienced as contracting out one's physical self, while contracting oneself out as a professor—while involving physical activity such as standing and talking—is rarely experienced in this manner.166 If the reason we should protect rights in our bodies stems from their especially important role in identity formation, in contributing to cultural velocity, then we should focus in particular on those uses of the body which, as a cultural and social matter, are actually experienced as bodily practices of identity formation or reformation. 2. The Body is Personal As the previous section reminded us, the importance of the body as a site of identity experimentation in many societies cannot be overstated. Many persons consider the ways hi which they fashion, adorn, and manipulate or modify their bodies (or refuse to do all these things) to be extremely important to their identity and sense of serf. The relationship of these behaviors to physical experience is part of what makes them unique among all sorts of identity performative behaviors. This uniqueness may make many of these behaviors good candidates for special legal protection. Because not all identity performative behaviors can be singled out, it may make sense for us to at least include those which have the unique aspect of being experienced by many as both personal and political, straddling the line between our separation from and connection to others. But is there any reason to single out the human body per se, as opposed to some of its extensions, such as clothing and perhaps other chattel, from other arenas of identity exploration? In this section, I consider whether the fact that we have embodied subjectivities167 provides such a reason. Embodied subjectivity describes the notion that we are not cognitively separate from our bodies, that we are not minds or souls simply "inhabiting" or "inside" a physical body. We experience the world not as consciousnesses separate from and encapsulated within a body, but rather through our bodies.168 For instance, what if I purchased artificial eyes to improve my vision, but those artificial eyes contained a filter, blocking me from seeing images that were deemed to undermine the interests of the company that sold me the eyes? This physical change would alter my subjectivity it166. See Nussbaum, supra note 13, at 693-94 (pointing out that professorial labor, like prostitution, involves contracting out the body). 167. See, e.g., MARGARET A. MCLAREN, FEMINISM, FOUCAULT, AND EMBODIED SUBJECTIVITY 2-3,14,83-91 (2002). 168. See, e.g., id. at 83-84.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

109

37

self—my perception and experience of the world. The power to force or even encourage most persons to implant such a filter would be a great power indeed. The concept of embodied subjectivity shares something with the view that, "rather than speaking of rights in our bodies[,] it would be more appropriate to say that for Hegel we have rights through our bodies . . . an assault on one's body is not experienced as damage to one's property but rather as direct injury to one's self as a person."169 Indeed, our brains and nervous systems, which in modern times we often imagine to be our "consciousnesses," are part of our bodies, and thoroughly embedded in our bodies. Nobody has yet succeeded in transferring the contents of a person's consciousness to a location outside the person's body. There is currently no way to "upload" your brain to a computer. Even if there were, it is unclear if the computer's inability to taste, touch, smell, and see would proceed to alter the consciousness in some significant way.170 Another way to put this "is that all cognitive experience involves the knower hi a personal way, rooted hi his biological structure."171 "We have a subjective experience of our own thought processes, but at best only an imagined representation of what goes on in others' subjective experience."172 The concept of embodied subjectivity implies that if I change my body, I change the structure through which I perceive and experience—I change my subjectivity. Were we to consider only this, we might promote a human right in the body that maps directly onto the physical, human body. Jed Rubenfeld, for instance, has argued that bodily control should be part of the fundamental right to privacy because it may be a particularly effective way for the state to influence subjects at the "formative" level.173

169. Uffe J. Jensen, Property, Rights, and the Body: The Danish Context—A Democratic Ethics or Recourse to Abstract Right?, in OWNERSHIP OF THE HUMAN BODY, supra note 37, at 173, 180-81 (alteration in original) (quoting HARRY BROD, HEGEL'S PHILOSOPHY OF POLITICS 69 (1992)). 170. This is not to say that the uploaded consciousness's difference from us would mean it should be treated differently. That question goes to whether legal personhood should be granted to so-called artificial intelligences. See Lawrence B. Solum, Legal Personhood for Artificial Intelligences, 70 N.C. L. REV. 1231, 1231-32 (1992) (exploring this question). The point is simply that current persons have embodied subjectivities, and we should therefore consider those embodied subjectivities when we think about what rights to grant persons, and how best to fulfill them. It may be that disembodied subjectivities wouldn't need the same rights that embodied subjectivities have. This potentially unequal treatment should not trouble us, as this would simply be a case of treating unlike persons differently, rather than treating like persons differently. 171. HUMBERTO R. MATURANA & FRANCISCO J. VARELA, THE TREE OF KNOWLEDGE: THE BIOLOGICAL ROOTS OF HUMAN UNDERSTANDING 18 (rev. ed. 1998). 172. TERRENCE W. DEACON, THE SYMBOLIC SPECIES : THE CO-EVOLUTION OF LANGUAGE AND THE BRAIN 424 (1997). 173. Rubenfeld, supra note 113, at 800-01.

110

The Right to Bodily Integrity

38

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

Imagine that we could have filters implanted into our eyes. What if a filter were created that made it impossible for the recipient to see miages deemed dangerous to the government, and the government forced us all to have the filters implanted? In contrast, imagine that the state forces us all to paint our houses in the colors of the incumbent political party. We might propose that because we have embodied subjectivities, there is a good reason to be even more frightened of the former state than the latter. If the state can control how its citizens perceive the world, this creates, we might say, a much greater danger of cultural stagnation than if the state can control whether citizens demonstrate support for the government. At least in the latter case, the citizens could reappropriate the incumbent party's colors for some subversive purpose, or could perhaps shift their dissent to other arenas, like dress or speech. In other words, the idea of embodied subjectivity might provide a factual, scientifically verifiable reason to distinguish between the body and "personhood property" like wedding rings or houses—a reason to create "privacy" rights in the body. However, we should not forget that the body is not only personal, due to its important role in our subjective experience; it is also generally political, because it is often the site at which we take on a social form. Thus, some uses of and changes to the body will be more important to the formation and exploration of identity than others, despite the fact that subjectivity is embodied. Moreover, some changes to and uses of the body are commonly experienced hi terms of their physicality, such as appearance manipulation, and others are not, such as speech. This is largely a product of social circumstance. Finally, and most importantly, even the subjective, lived experience of the body is inevitably determined in part by social circumstances and coercion. The law cannot protect embodied subjectivity by carving off the human body because even this does not make it fully secure from state and private coercion. Suppose, for instance, that a technological improvement were invented that provided purchasers with additional sixth—or even tenth— "senses." In fact, implants have already been created that would permit the recipient to sense electromagnetic fields.174 Implants of this sort are property. They are clearly not part of the organic, human body. But the power of the implant seller to retain certain property rights in the implant may become a power to influence the subjectivity of the implant recipient. Such a power is inevitable in a world in which the body and property exist in relation to each other, in which they bleed into each other. In other words, if there is a "body" that human rights or constitutional law ought to be protecting, it is not the "human body," as defined 174. Quinn Norton, A Sixth Sense for a Wired World, WlRED.COM, June 7, 2006, http://www.wired.eom/gadgets/mods/news/2006/06/71087.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

111

39

to mean an organic, physically continuous being distinct and isolated from the surrounding world, but rather the "posthuman body," defined as constructed by and situated within a social and technological context.175 Protecting this "posthuman body" can't be done by carving it off for special legal status because it can't be carved off at all. Thus, it must be protected through a combination of negative rights against the state and positive regulation of property and contract. Under this view, we should no longer recognize a fundamental right to "bodily integrity," and fundamental rights should abandon the concern with commodification of human bodies per se. However, we should choose rights to protect—both as negative rights and through positive regulation—with a recognition that various uses of and changes to the body are especially important to the formation of diverse identities, and therefore, to the goal of cultural evolution. In sum, the body is indeed a unique arena of identity reformation because of facts about embodied subjectivity—a subjectivity that is always influenced by the world around the body—and because of facts about the body as an extremely common site of cultural, political, and social identity performance.176 This provides a fair reason in many societies to give special legal attention to identity development and formation that is related to the body. But it does not provide a sensible reason to create a legal right that maps neatly onto the natural, human body. In the next section, I outline what factors we would appropriately consider, from the cultural velocity perspective, when deciding what kinds of coercion over the body should be carved out for special legal attention. 3. Protecting Bodies from Control Due to the embodied nature of subjectivity, control of a person's body may in fact become control of that person's very subjectivity, directing the identity, thoughts, and beliefs of the person being controlled. But our fear of this result may not be substantiated in every instance in which the body is commodified, even when this occurs in a context of coercion.177 For instance, when blood is removed from the body, sensory experience and inputs do not appear to change dramatically in the long term. When someone engages in sexual activity, future experiences may be altered significantly, but the change might be a positive one, rather than a negative one.178 175. See generally PEPPERELL, The Posthuman Manifesto, supra note 51. 176. It may even be the fact that subjectivities are embodied that has partially led to the frequency with which cultures treat the body as a primary site of identity expression, formation, and reformation. 177. See Stephen R. Munzer, Property as Social Relations, in NEW ESSAYS IN THE LEGAL AND POLITICAL THEORY OF PROPERTY 36, 46-52 (2001) (distinguishing between coercion, exploitation, the use of power, and coercion as a neutral term and a negative term). 178. Of course, if the sexual activity results in pregnancy, these changes to the biological structure are probably severe enough to dramatically change the subjective experience of the person,

112

The Right to Bodily Integrity

40

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

Sometimes a bodily intrusion or invasion carries with it a destructive social or cultural meaning that one is subordinate or one's identity worthless. Rape has been described hi this manner, for instance. Socially and culturally, bodily invasion and control by another is often experienced as a loss of control over one's identity. On the other hand, those who consent to sexual intercourse are not thought to generally experience a loss of self-worth or identity in the way that some rape victims may. We can ask ourselves in these varied situations, in what way does the right to refuse or consent to bodily intrusion and invasion promote the possibility of new and creative exercises of agency hi the formation of identity? An interest of countermajoritarian constitutional or human rights law in individuals' control over their own bodies is the interest hi what that control promotes—the capacity for social change as security against stagnation. This explains why we might intrude on the libertarian autonomy to contract away control of the body where it better promotes that public interest. Just as state control of bodies might get hi the way of bodies being used to explore and reform cultural identity, too much private control of bodies might, too. We may legitimately fear that an individual will become unable to form then* own opinions, thoughts, make then* own decisions, and consider a wide variety of cultural affiliations if another controls then* body, even if they consented to that control. Thus, there is something sensible underlying the concern many have with transfers of rights hi the body, once we conceive of those rights as connected to cultural and political expression and identity development, rather than merely zones of autonomy. Since subjectivity is embodied and bodies are so important culturally, those transfers may threaten our interest in dispersed, rather than consolidated, control of the formation of subjects and identities. If the formation of subjects is left to the control of the market, we may see societies as static as those hi which the formation of subjects is rigidly controlled by the state. If we cared only about autonomy, we would leave persons to suffer the consequences of then* choices. That is what it means to have a choice. And if we cared only about a static notion of respect for the natural body, we would often refuse to permit persons to modify their own bodies. But if we also care about freedom of thought, affiliation, and cultural production because it is good for society, then we might want to prohibit someone from entering into contracts that will inhibit those freedoms, hi order to prevent those with greater capital from obtaining a monopoly on these crucial contributors to social, political, and cultural change. The goal of a even aside from changes in the way the person is treated socially. Thus, we might want to do our best to ensure pregnancy is a state entered into with some forethought.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

113

41

society not overly constrained by orthodoxy may require that we forbid persons from entering into too many self-constraints, but would still require respect for most of the choices persons make. However, getting rid of all social coercion over our bodies is impossible. The relevance of our bodies is largely within a social context. When a property owner places stairs at the front of a building, she makes the bodies of those persons who cannot climb stairs relevant to their experience of the world in a way it would not be had she made the entrance level with the sidewalk. When an employer requires his cocktail waitresses to wear three-inch heels at work, he has not required them, at least in the short term, to modify their natural bodies,179 but he has changed the way it feels when his employees walk, stand, or even sit. Even "the use of tools and artifacts," such as at work, "requires a degree of incorporation into the body; . . . the 'labor of animation.'"180 And these uses of the body have lasting effects. For instance, despite the fact that Henry Ford believed that repetitive labor would not "injure[] a man in any way," such injuries do result. (Ford admitted having been told "by parlour experts that repetitive labour is soul—as well as body— destroying, but that has not been the result of our investigations," he argued.)181 Not only is all this private coercion inevitable, human flourishing is possible within the context of all this coercion, and is even facilitated by the existence of private repositories of power. For instance, although capitalism is a system that places a great deal of coercive power hi private hands, capitalism can provide the freedom to deviate from social and cultural norms that contributes to the creation of new subcultures. These subcultures can then challenge the very norms from which they deviate. For instance, capitalism opened up a venue for the flourishing of queer culture,182 and gay men and lesbians have found a refuge hi commercial venues such as bars and certain sectors of the entertainment industry. Similarly, although it would seem that the choice to have sex hi exchange for money is always, in some sense, coerced by the need or desire for that money, this commodified sexual activity is not necessarily less fulfilling or more corrupted than sexual activity arising out of "love" or other impulses. For instance, hi the work of some pro-sex feminists, prostitutes have reported emotional connections and even having "favo179. Although in the long term he may have caused them lasting injury. 180. Jain, supra note 38, at 32 (quoting Elaine Scarry, The Merging of Bodies and Artifacts in the Social Contract, in CULTURE ON THE BRINK 85, 97 (Gretchen Bender & Timothy Druckery eds., 1994)). 181. Id. at 34 (quoting HENRY FORD WITH SAMUEL CROWTHER, MY LIFE AND WORK 105 (Doubleday, Page & Co. 1923) (1922)). 182. See John D'Emilio, Capitalism and Gay Identity, in THE LESBIAN AND GAY STUDIES READER, supra note 108, at 467,473-75.

114

The Right to Bodily Integrity

42

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

rite" clients.183 These positive stories of prostitution can in turn challenge our conceptions of what sexual activity should be and what role it should play in our lives. Finally, proponents of cultural property rights for indigenous and other groups, in response to arguments that these rights would "commodify" important elements of a culture, have demonstrated how this cornmodification need not be destructive to a subordinated subculture, and can be used for progressive ends.184 In other words, we should acknowledge that human flourishing can occur in the context of economic transactions, and can even be facilitated by it.185 In the context of the First Amendment, the United States Supreme Court has already recognized this, holding that forbidding profit from speech is an unconstitutional restriction of speech.186 Thus, a federal law that prevented civil servants from being paid for speeches and writings has been struck down as overly restrictive of speech.187 Similarly, one of New York's "Son of Sam" laws was struck down as overly restrictive of speech. The law required convicted criminals profiting from their crimes through books and movie deals to donate the profits to a victim compensation fund.188 These holdings acknowledge that banning the commodification of a practice, or banning profits from the practice, does not in the context of a generally capitalist economic system "protect" the practice hi any sense. Rather, it discourages the practice. On the other hand, the sometimes deleterious effects of capital on these explorations of and articulations of identity cannot be ignored either. The most visible forms of gay culture have displayed a tendency to idolize the white and the wealthy.189 And positive stories of prostitutes documented by pro-sex feminists aside, there are plenty of stories of prostitution experienced as exploitative, denigrating, misogynist, and 183. Lucas, supra note 22, at 252. 184. See Carpenter et al., supra note 72, at 1026-30; Madhavi Sunder, Property in Personhood, in RETHINKING COMMODIFICATION, supra note 22, at 164, 171 ("[T]here may, in fact, be some room for property in personhood claims if they are grounded on more modern understandings of both culture and property."). 185. See Carol M. Rose, Afterword: Whither Commodification?, in RETHINKING COMMODIFICATION, supra note 22, at 402, 404 ("Markets seem inappropriate for some things, but then again, maybe markets are pretty useful for exactly the same things."). Rose also discusses the "market's possibilities for novelty, liberty, and self-fashioning—not to speak of money." Id. at 421. 186. See Va. State Bd. of Pharmacy v. Va. Citizens Consumer Council, Inc., 425 U.S. 748, 761-62 (1976) (concluding that speech which proposes a commercial transaction is protected by the First Amendment). 187. United States v. Nat'l Treasury Employees Union, 513 U.S. 454, 467 (1995) (holding the government to a high burden to justify its "wholesale deterrent to a broad category of expression by a massive number of potential speakers"). 188. Simon & Schuster, Inc. v. Members of the N.Y. State Crime Victims Bd., 502 U.S. 105, 117 (1991) (subjecting Son of Sam law to First Amendment scrutiny because it operated as a "disincentive[] to speak"). 189. Ramachandran, supra note 9, at 55-56 (using Will and Grace and Queer Eye for the Straight Guy as examples).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

115

43

racist. We should acknowledge that systems of capital can facilitate human flourishing but also have an enormous effect on the end results of that flourishing. Leaving that influence unchecked risks the consolidation of power over cultural and social production hi the hands of a few. Thus, we may want to soften the effects of capital on practices that promote cultural velocity through regulation of property and contract, rather than through total bans on practices such as commodifying the body. So what question should we answer when we embark on that project? When should we regulate property and contract in the interest of the special role the body may play in cultural velocity? I propose the following standard: we should ask ourselves, to what degree does the property transfer being contemplated, or the assertion of rights by the property owner, raise the concern that an individual will lose the ability to explore, form, and reform his identity as a social being? a. Pain If the control an individual seeks to submit himself to involves pain or extended physical discomfort, the fear may be substantiated. For most persons, subjection to pain and discomfort is cognitively difficult to overcome. Of course, some persons are particularly lucky or resistant; they do not mentally collapse even after years of torture or slavery. But others lose all capacity to interact as social beings. Torture has been described as "unmaking the world" of the victim for this reason.190 Even those in slavery who are not physically abused can often lose their sense of agency in manufacturing a social identity. The embodied nature of our subjectivities is why the infliction of physical pain through torture can have this effect. In other words, even in the absence of any cultural meaning that torture is disrespectful to the victim, acts like torture may, via control of the body and infliction of pain, too greatly inhibit the individual's development of an identity.191 b. Duration In addition to the degree of pain a particular intrusion on the body entails, the duration of the consequences of subjection to the physical control of another may be relevant to the capacity to form and reform one's own identity. For instance, there is a substantiated risk that someone who sells an entire limb will undergo a change hi his or her experience of the world so significant (and permanent) that it may be difficult to cognitively overcome the feeling that one's identity has been altered.192 Selling oneself into indentured servitude of permanent duration 190. SCARRY, supra note 117, at 37-38. 191. See Rubenfeld, supra note 113, at 776-81. 192. See Miho Iwakuma, The Body as Embodiment: An Investigation of the Body by MerleauPonty, in DISABILITY/POSTMODERNITY, supra note 42, at 76, 81 (describing the phenomenon of phantom limbs in amputees).

116

The Right to Bodily Integrity

44

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

would likely do something similar. But the fear that one will lose the capacity to develop one's identity by selling blood or hair is far less substantiated because neither of these losses is very permanent. c. Cultural Meaning Finally, if the control an individual seeks to give up is over the way the body is culturally read and presented, this can implicate law's interest in dispersing control over formation of identities. Thus, when employees contract away to employers their rights to dress as they please, the interest in dispersed control over bodies is implicated. This need not mean that as the right is balanced against other interests, the right always prevails. However, it does mean that positive regulation of such employment contracts might be one way of promoting cultural velocity through individual rights to "bodily" exploration of identity. In the next Part, I explore a few tentative examples of how we might apply this standard in the United States. These examples will serve to flesh out how the approach might be applied in a particular cultural context. Even when we take into account current social realities about the importance of the body, the legal rights we would then recognize will look different than traditional rights to bodily integrity we have seen before. The examples will necessarily not be comprehensive, and of course, application of the principle will sometimes involve a host of other considerations, especially when positive property and contract regulation is considered. The purpose of the examples, however, is to help elucidate the difference between rights in the human body and rights that acknowledge the body's importance, but stop treating it as an end in itself.

V. EXAMPLES OF THE BODY'S RELATIONSHIP TO FUNDAMENTAL RIGHTS Applying a human or constitutional right that appropriately protects the public interest in cultural velocity, as it relates to the practical importance of the body in cultural velocity, will necessarily require both negative rights against the state and positive property and contract regulation. Only a combination of both negative rights and positive regulation can help to ensure that the legal and social coercion that bodies are subject to does not lead to consolidated control over culture in the hands of a powerful few. Some of these example applications will result in very familiar negative rights against the state, ones that both dignitarians and libertarians promote, such as the right to refuse medical treatment or other state attempts to mandate changes to the body. Other familiar rights against the state would include the right to change one's own body, such as the right to obtain tattoos and piercings, to cross-dress, or to purchase medical treatment.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

117

45

Other applications will consist of protecting rights that increase cultural velocity against private regulation, resulting in property regulation that many dignitarians would agree with, but that strong libertarians would reject. For instance, we might limit the ability to sell one's own body part when that sale would result in long term physical pain and thus cognitively interfere with the ability to develop and reform one's identity. There will also be applications of cultural velocity to protect rights against private coercion that would be totally unfamiliar to either the dignitarian or libertarian approaches. For instance, my approach might lead us to regulate exchanges in ordinary chattel, such as certain implants and prosthetics. Still other forms of regulation might consist in extensions of employment and housing law, protecting people with different bodies from discrimination in these realms. I also describe in this Part some examples of property and contract regulation, such as total bans on prostitution and organ selling, that do not in fact further properly conceived "rights in the body." This is despite the fact that such regulation is frequently justified on the grounds that it protects against commodification of the body. A. Rights Against State Intrusion—from Torture to Forced Vaccination Applying the cultural velocity principle to questions of state intrusion into the body would likely result in the recognition of a relatively familiar negative right against state intrusion into the body. This is because embodied subjectivity creates the danger that many forms of state intrusion on bodies are too cognitively difficult to overcome. If the state can intrude on one's body, and can thereby direct our subjective experiences, this may lead to state suppression of different ways of living, different experiences, and different identities, all of which generally contribute to cultural evolution when left unpunished by criminal law. Thus, rights to resist severe state imposed pain193 or very invasive or permanent medical treatment,194 such as forced sterilization,195 would likely be included within an application of the cultural velocity approach, just as they would likely be included in the "bodily integrity" rights protected under many dignitarian and autonomy approaches.

193. Cf. Baze v. Rees, 128 S. Ct. 1520, 1530 (2008) (noting that what many forbidden punishments under the Eighth Amendment "had in common was the deliberate infliction of pain for the sake of pam-'superadd[ing]' pain to the death sentence through torture and the like" (alteration in original)). 194. E.g., Vacco v. Quill, 521 U.S. 793, 807 (1997) (clarifying that the right to refuse medical treatment rests in the right "to bodily integrity and freedom from unwanted touching"). 195. E.g., Tennessee v. Lane, 541 U.S. 509, 534 (2004) (Souter, J., concurring) (describing the now discredited but "once-pervasive" forced sterilization of persons with disabilities).

118

The Right to Bodily Integrity

46

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

On the other hand, mandatory vaccination does not entail a great degree of pain, the pain felt does not last very long, and the cultural meaning of being marked as a person with or without a vaccination is not very significant to most persons' identity. Thus, no fundamental right to refuse vaccination should stem from the special relationship of the body to rights. This does not mean that rights to refuse vaccination could not stem from other sources, such as religious freedoms.196 But the argument that rights to bodily integrity or control over one's body should entail rights to refuse vaccination are too fetishistic about the body, subscribing to the fiction that our bodies could ever be "free" from all intrusion that implicates dignity or autonomy. B. Rights to Change One's Body—From Abortion to Cross Dressing Applying the principle to the question of rights to proactively modify and treat one's body would also likely result in relatively familiar negative rights against state criminalization of those modifications and treatments, such as abortion,197 or treatments that are necessary to avoid pain.198 A right to purchase many forms of medical treatment, or even "upgrades" to "healthy" or "normal" bodies, would also likely fall within the scope of rights we would want to protect in order to promote cultural velocity. In this way, any "bodily" right protected under cultural velocity would be quite different from the American constitutional right to bodily integrity, which distinguishes between rights to resist intrusion into the body and rights to modify one's own body. The United States Supreme Court has recognized a fundamental right to refuse life sustaining medical treatment, but has not recognized a fundamental right to contract for assistance in committing suicide through the use of medication.199 But the cultural velocity principle would not make this distinction because the right is not grounded merely in the "integrity" of the body, nor even merely in avoiding physical pain.

196. E.g., In re Sherr v. Northport-East Northport Union Free Sch. Dist, 672 F. Supp. 81, 91 (E.D.N.Y. 1987) (finding that under First Amendment, religious exemption to New York's mandatory inoculation program for school children must be extended to all persons who sincerely hold religious beliefs, and not just persons who are bona fide members of a recognized religious organization). 197. See Roe v. Wade, 410 U.S. 113,163 (1973). 198. Some Supreme Court justices have indicated that they would find constitutional fault with laws that prohibit the administration of pain medication necessary to alleviate great suffering, even in instances where the administration of the medicine is virtually certain to cause death. Washington v. Glucksberg, 521 U.S. 702, 736-37 (1997) (O'Connor, J., concurring) ("The parties and amici agree that in these States a patient who is suffering from a terminal illness and who is experiencing great pain has no legal barriers to obtaining medication, from qualified physicians, to alleviate that suffering, even to the point of causing unconsciousness and hastening death."). 199. Compare Cruzan v. Dir., Mo. Dep't of Health, 497 U.S. 261, 278 (1990), with Vacco, 521 U.S. at 807.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

119

47

The principle also recognizes the importance of the body as a means of exploring and forming a cultural identity, and would therefore likely protect choices to engage in numerous kinds of body modifications, such as abortions, surgical and hormonal sex change procedures, cosmetic surgery, tattooing, piercing, and perhaps the ingestion of "mind altering" drugs. Again, rights are rarely absolute in any constitutional system, so professional and safety regulation of many of these practices would likely pass muster, as they do in the American constitutional system.200 The right to cross dress, and indeed, to dress as one pleases in public generally, would likely also be appropriately protected, even though dress and the use of jewelry do not involve the alteration of one's "natural" body. I have argued for such a freedom of dress in a prior work, but it is not on solid footing in American constitutional law.201 Of course, as with all rights, sometimes the right will need to be balanced against other rights and other interests. Thus, threatening exercises of dress, such as indecent exposure committed with intent to harass and threaten, or the wearing of dangerous weapons as part of an "outfit," could be regulated, but the point remains that some kind of countermajoritarian right to manipulate one's appearance would make sense under the cultural velocity principle's application to the special importance of our bodies. C. Rights to Use One's Body—from Sexual Liberty to Verbal Harassment A right to sexual liberty202 might also be grounded in this cultural velocity principle. Sexual activity is a use of the body that is largely described as having important components of physicality, just as the freedom to manipulate one's appearance through dress was historically described as a bodily freedom.203 Moreover, sexual activity is one important means in many cultures of forming cultural affiliations and identity. But would recognition of the body's importance to cultural velocity principle mean that we would protect every single use of the body? Could I claim that because my verbal harassment of another person involves use of my mouth that it is protected under the right? Could I claim that because thinking involves my brain, which is part of my body, an inquiry into my intent to commit a crime is an intrusion into my rights over my body? 200. For instance, the right to obtain an abortion may be limited by health and safety regulations throughout pregnancy. Planned Parenthood of Se. Pa. v. Casey, 505 U.S. 833, 874-78 (1992). 201. Ramachandran, supra note 9, at 16-17 (describing Supreme Court's denial of certiorari on the issue in the face of a circuit split). 202. Cf. Lawrence v. Texas, 539 U.S. 558, 567 (2003) (finding criminalization of same sex sodomy between consenting adults in private to violate the due process clause of the Fourteenth Amendment). 203. See James Allon Garland, Breaking the Enigma Code: Why the Law has Failed to Recognize Sex as Expressive Conduct Under the First Amendment, and Why Sex Between Men Proves that it Should, 12 L. & SEXUALITY 159, 180-87 (2003) (using the example of relationships between gay men to demonstrate the expressive nature of sex).

120

The Right to Bodily Integrity

48

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

Recognition of the body's importance to cultural velocity, as a practical reason to select certain bodily-identity performative behaviors for legal protection, would not provide a reason for selecting speech or thought for legal protection. Those reasons would have to be articulated separately. This is because the cultural velocity conception has abandoned any idea that rights should map onto the physical borders of the human body. Thus, not every use or modification of the human body will necessarily implicate the body in a manner relevant to cultural velocity. Those uses that, as a cultural matter, tend to be experienced and understood as implicating subjectivity and cultural performance will be the uses that sit at the core of the right. This is why dress would be a more plausible candidate for protection than verbal speech, despite the fact that verbal speech involves a great deal of movement of one's mouth—part of the human body—while dress may not involve the movement of any part of the human body. Dress merely involves the placement of chattel upon the human body. D. Patent Law Beyond these mostly familiar negative rights against the state, applying the cultural velocity principle would also likely result in some rather unfamiliar forms of property regulation. For instance, it is possible that we might want to restrict end user license agreements ("EULAs") in certain forms of chattel because they would threaten individual innovation and ability to form and reform identity. We wouldn't ignore the implications of sellers retaining property rights hi highly personal chattel just because it's chattel, rather than part of the organic body. As one example, we might want to restrict the enforcement of EULAs against users of prostheses and other medical technology that intimately affects mobility, perception, or communication. This would include items like cochlear implants, robotic arms, visual aids, wheelchairs, and the like. While the idea that patent holders on these technologies would enforce EULAs against patients may seem far-fetched, the possibility that they would do so in a future in which many of these devices are "elective" is much stronger. If Apple is willing to enforce such agreements against purchasers of iPhones,204 would it not consider enforcing them against purchasers of computer or phone implants? Memory card implants? We might even want to simply restrict the enforcement of EULAs against users of any technology deeply tied to identity formation, whether or not it has anything to do with physicality or the body. It may be that 204. Katie Hafiier, Altered iPhones Freeze up, N.Y. TIMES, Sept. 29, 2007 at Cl, available at 2007 WLNR 19068410 ("Jennifer Bowcock, an Apple spokeswoman, said that when people went to update their software with their computer through iTunes, a warning appeared on the computer screen, making it clear that any unauthorized modifications to the iPhone software violated the agreement that people entered into when they bought the phone.")-

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

121

49

the importance of the body will start to drop away, over time, and will no longer be a pragmatic, culturally appropriate way of singling out some identity formative practices from others for legal protection. The number of persons who find their phones, Facebook accounts, and other items to be more foundational to identity than even a prosthesis or their clothing may be growing. The cultural velocity approach is well-suited to deal with these sorts of changing conditions because it is an empirically falsifiable, consequentialist approach. E. Employment and Housing Law Another relatively unfamiliar area hi which we might want to promote cultural velocity as it relates to bodily identity performance is in the regulation of employment and housing contracts. The U.S. economic system provides very minimal welfare rights, and indeed, provides no welfare entitlements to those who are considered able to work but do not.205 Thus, the process of entering into employment and housing contracts for most adults in the U.S. is essential. With respect to the workplace, statutes like the Civil Rights Act of 1964206 have made the American workplace more integrated and diverse along culturally salient categories such as race than many other private institutions such as churches or social clubs.207 The workplace is already a venue where Americans can learn about those with different identities, where we can be challenged.208 We have already made statutory moves toward accommodating differences in bodies in both the employment and housing contexts, and we do not limit ourselves only to those differences in bodies which are fully biologically determined. For instance, we forbid discrimination on the basis of race, sex, and skin color209 in these contexts, even though both race and sex can be thought of as socially constructed hi part. We also require reasonable accommodation, at least in principle, of persons with disabilities at work and in school.210

205. The Personal Responsibility and Work Opportunity Reconciliation Act of 1996 permitted states to stop paying benefits to those otherwise eligible for welfare assistance if the recipient did not engage in qualified work. Pub. L. No. 104-193, § 407, 110 Stat 2105, 2129-34 (codified as amended at 42 U.S.C. § 607 (2006)). 206. See generally 42 U.S.C. §§ 2000e-l to -17 (2006). 207. See Cynthia L. Estlund, Working Together: The Workplace, Civil Society, and the Law, 89 GEO. LJ. 1, 17 (2000) ("[E]ven the partial demographic integration that does exist in the workplace yields far more social integration—actual interracial interaction and friendship—than any other domain of American society."). 208. See Cynthia L. Estlund, Free Speech and Due Process in the Workplace, 71 IND. L.J. 101, 112 (1995) ("The workplace functions not only as a self-governing institution and as a regulated institution; it also functions as a crucial intermediate institution that stands between the individual and the state."). 209. See generally 42 U.S.C. §§ 2000e, 3601-3619 (2006). 210. See generally 42 U.S.C. §§ 12101-12213 (2006).

122

The Right to Bodily Integrity

50

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

However, we may want to expand this to accommodating not just biological or "accidental" difference, but also other differences hi bodies. We may protect the ability of employees hi their use of chattel closely related to the body, such as clothing, jewelry, or hairstyling.211 We might also protect transgender employees, who change the gender presentation of then* bodies through both surgical and somewhat more superficial changes. We could also protect transgender persons and persons who dress unusually from being excluded from housing. When it comes to this kind of private regulation of rights, a workable way of protecting rights hi this private context will of course require a great deal of finesse. One appropriate way to balance the many interests at stake would be to require reasonable accommodation of employee differences hi dress hi most workplaces and provide statutory exceptions for certain jobs such as modeling or acting.212 Protections from sexual orientation discrimination could be conceived of as a means of promoting the right as well, as sexual conduct is certainly in the United States a means of exploring and forming identity through the use of the body. Finally, we could consider expanding the kinds of bodies we reasonably accommodate hi workplaces and schools beyond those currently protected by the Americans with Disabilities Act. Perhaps a body need not be "disabled" to the point of impairment in a "major life function" for us to recognize that it represents a different identity we may want others to interact with and learn from.213 Under this framework, persons who choose not to or cannot afford to "upgrade" their bodies through the use of drugs (such as steroids) and other biotechnology could be protected against unjust workplace or educational exclusion through reasonable accommodation of their comparative disadvantages and differences. However, the protections would not necessarily be great—"reasonable accommodation" is, after all, a relatively weak mandate. As a result, those who did not alter their bodies and therefore became less adept at truly core job functions would likely be left unprotected. I choose the weak requirement of reasonable accommodation purposefully as an example of what protecting rights to have a different body in a private sphere such as the workplace might look like. 211. I have proposed just this in a prior article, Freedom of Dress. See Ramachandran, supra note 9, at 37^3. 212. Id. at 61-64. 213. The Supreme Court has interpreted the Americans with Disabilities Act ("ADA") such that the protected class of disabled persons it protects is quite narrowly defined. Kg., Sutton v. United Air Lines, Inc., 527 U.S. 471, 488-89 (1999) (finding that severely myopic job applicants were not disabled within meaning of the Act because they could use corrective lenses, and therefore received no protection from discrimination by the defendant employer on the basis of the myopia). The ADA was recently amended, however, to clarify that the coverage should be broad. ADA Amendments Act of 2008, Pub. L. No. 110-325, § 4, 122 Stat. 3553, 3555-56 (codified as amended at 42 U.S.C.A. § 12102 (West 2009)).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

123

51

This relatively weak protection takes seriously the fact that some degree of coercion over bodies is inevitable. There will likely be economic incentives to take enhancing medication or alter one's body in other ways in the future, just as there are economic incentives to obtain cosmetic surgery that makes one more attractive now, and economic incentives to wear contact lenses or even obtain LASIK surgery. Because this coercion is inevitable, the aim of property and contract regulation to protect rights hi the body can never be to provide absolute, substantive equality or absolute "freedom" for different bodies. The aim can only be to soften the effects of capital and other sources of private power on the variety of bodies and identities that become part of our culture—to prevent the consolidation of power over culture through power over bodies. F. Welfare Law With this in mind, we may be faced with body modifications in the future that are so economically valuable we simply cannot accommodate those who do not obtain them. Such accommodation may not be as easy as accommodation of visual or hearing impairments hi many professions. For instance, we might be faced with the development of technology that dramatically expands memory or other components of intellectual capacity. Thus, we might find it simpler at times to just redistribute wealth more dramatically, as a means of ensuring that those without capital retain a degree of material security no matter what they do or do not do to their bodies. This is certainly not strong protection, since all it would likely guarantee is that having an unusual body will not lead to starvation or homelessness. But we might argue that more generous welfare benefits are required for precisely this reason. It is also worth pointing out that currently, we do not even have protection against starvation and homelessness for persons with unusual bodies, persons who are challenging our social norms. Transgender persons, for instance, are so marginalized under American law that they often become homeless and their very existence essentially criminalized.214 No welfare system ensures basic material security for transgender persons, as even sex segregated homeless shelters are often unable to provide security.215 As another reform of welfare law, we might also provide welfare entitlements to obtain some economically valuable body modifications,

214. Spade, supra note 123, at 751-52. 215. Id, at 752-53 (describing how a host of laws, including gender documentation requirements even for driver's licenses, create a lack of access to employment and housing, and unsafe conditions at homeless shelters for many transgender persons).

124

The Right to Bodily Integrity

52

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

to ensure that those with fewer financial resources and their progeny are not locked out of future opportunity and cultural participation.216 In fact, some prominent members of the "transhumanist" movement have predicted that once extremely valuable technology modifying the body is available, the masses will simply "demand" a dramatic wealth redistribution.217 This is meant to respond to egalitarian concerns that body modifying or improving technology could widen the gap between poor and rich too far.218 While I find this prediction to be overly optimistic, the core point is a fair one—perhaps generous welfare law is a more direct instrument with which to deal with the inequality that social and cultural coercion over bodies inevitably causes. This makes sense once we have recognized that private property rights already threaten persons' control over their bodies. If that is the case, welfare law, rather than rights to "bodily integrity" or "personhood," may sometimes be the most effective way of protecting the ability to have a different or unusual body. G. Body Commodification—From Prostitution to Organ Selling Are there some sales of the body's parts or uses that must be prohibited, or that cannot be prohibited? There are some sales of the body or its parts that we might legitimately be concerned with from the perspective of protecting the public interest in cultural velocity. This is because we might legitimately be concerned that those with economic power and other forms of private influence could obtain too much control over culture by obtaining too much control over bodies. On the other hand, not every commodification of the "natural" body need be categorically forbidden, because not every commodification of the natural body impli-

216. The United Nations Convention on The Rights of Persons with Disabilities represents an important move towards welfare rights to certain aids. Section (g) of Article 4 states an obligation of parties to "undertake or promote research and development of, and to promote the availability and use of new technologies, including information and communications technologies, mobility aids, devices and assistive technologies, suitable for persons with disabilities, giving priority to technologies at an affordable cost." G.A. Res. 61/106, art. TV, U.N. Doc. A/RES/61/106 (Jan. 24, 2007). Article 20 states that parties "shall take effective measures to ensure personal mobility with the greatest possible independence for persons with disabilities." Id. at art. XX. This includes "[facilitating access by persons with disabilities to quality mobility aids, devices, assistive technologies and forms of live assistance and intermediaries, including by making them available at affordable cost." Id. 217. HUGHES, supra note 45, at 214-15. 218. Id.: It is unlikely that a future majority of service-providing 'commoners' with more free time, communications and democracy than today would tolerate being lorded over by a dynasty of non-working hereditary capitalists. They would vote to change the system. The trend in the social democracies has been to equalize income by raising the standards of the poorest as high as the economy can bear. In the age of robots, that minimum will be very high. (internal quotation marks omitted) (quoting HANS MORAVEC, ROBOT: MERE MACHINE TO

TRANSCENDENT MIND 132 (2000)).

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

125

53

cates this concern. But are there any sales of body parts or uses that must be permitted, from the perspective of protecting cultural velocity? 1. Prostitution The best example of body commodification that arguably must be permitted under a proper understanding of the relationship of the body to rights is prostitution. Prostitution does not inherently involve pain, nor does it inherently involve indentured servitude or a use of the body that is extremely long in duration. Moreover, the long term physical effects of sexual activity, when engaged in with protections such as condoms, may be less significant than the long term physical effects of other forms of labor we permit, such as repetitive factory work. Of course, the cultural and social meaning of engaging hi sexual activity with another can be very significant, but forbidding all profits from activities that involve identity exploration, or from culturally meaningful acts, is unlikely to "protect" these activities in an otherwise essentially capitalist context. It is more likely to simply disincentivize them. This is why the United States Supreme Court has recognized that forbidding profits altogether from certain kinds of speech is usually an overbroad restriction on that speech.219 It is also why, when I argued for a freedom of dress, I did not argue that modeling and acting should be outlawed.220 Thus, it is arguable that not only should we abandon the claim that prostitution violates fundamental rights to bodily integrity, but we should also recognize a fundamental right to engage in prostitution, given the importance of sexual activity to identity formation and culture. One might ask, does sex really need to be incentivized, the way certain forms of speech need to be incentivized? Do we really need financial incentives for sexual identity formation and exploration? The kind of sex that is culturally "normal" probably needs little additional financial incentive for persons to experiment with it. But some kinds of unusual or culturally challenging sexual experiences will probably happen more often hi the United States if prostitution is legalized. For instance, persons with certain disabilities and disfigurements may be more likely to have sexual experiences if prostitution is legalized.221 Alternately, some of these culturally challenging practices might be made more culturally visible, and actually have some effect on cultural norms regarding sex-

219. United States v. Nat'l Treasury Employees Union, 513 U.S. 454,468-70 (1995). 220. Indeed, I proposed categorically exempting these jobs from reasonable accommodation of dress requirements. Ramachandran, supra note 9, at 63-64. 221. See Lucas, supra note 22, at 253 ("[I]n our nonideal world some individuals may be limited to a choice between commodified sex and involuntary celibacy."). See generally Elizabeth F. Emens, Intimate Discrimination: The State's Role in the Accidents of Sex and Love, 122 HARV. L. REV. 1307,1385 (2009) (including information on state subsidies in some countries for the purchase of prostitution services by persons with disabilities).

126

The Right to Bodily Integrity

54

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

uality, if prostitution is legal and more persons can "admit" to having sexual experiences with persons that are culturally disfavored sexually.222 Of course, sexual activity can be experienced as a bodily intrusion that affects one's very identity, even one's capacity to develop a different identity in the future.223 Thus, many forms of regulation of prostitution may be wholly appropriate, and because any right to prostitution would not be grounded in "autonomy," such regulation would not necessarily infringe upon the right. Some examples of appropriate regulation could be laws that seek strong assurance of consent, laws requiring safe practices to prevent disease and pregnancy, laws ensuring the ability of parties to change their minds, and perhaps periodic surveillance or inspection to prevent violence. Even taxing the proceeds of prostitution and using the funds for mandatory counseling or other activities designed to ensure that the identity of the prostitute is not destroyed might be appropriate. But in the face of arguments from sex workers that the work need not be destructive to identity formation and reformation, and in the face of the fact that we permit adults to take these risks with their physical bodies in the context of unpaid sex, prostitution appears to be a commodification of the body that we ought to legalize under a practical application of the cultural velocity principle, even one that accounts for the importance of sexual practice as a use of the body to identity formation. Arguably, some legal form of prostitution is even required as a matter of fundamental rights. 2. Organ Selling Organ selling, in contrast, is a form of body commodification that involves lasting physical effects on the body. Thus, societies may be rightly concerned that those who sell organs might be selling away an aspect of their very subjectivity, in a manner that could affect their ability to explore many possible identities and cultural affiliations. But this is likely not the case for every organ or organ sale. Selling one's eyes, a hand, or another such body part ultimately involved in sensory perception or mobility may have lasting effects on one's identity that the seller regrets. On the other hand, selling a kidney seems less problematic with respect to this public interest hi cultural evolution and change. Certainly the loss of a kidney entails future medical risk and even perhaps some experiences of pain that last well into the future. Thus, there are reasons to regulate such sales heavily to ensure 222. Cf. Lucas, supra note 22, at 261 ("Another benefit of commodification would be that. . . prostitutes could openly discuss their work, describe its pros and cons . . . . Customers could frankly discuss their experiences, both in the crass, economic way that commodification critics fear but also in honest terms about... what needs they seek to fill."). 223. See id. at 257-58.

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

127

55

fully informed consent. But a categorical prohibition on kidney sales does not appear to further the legitimate public interest in protecting individuals from contracting away their ability to form diverse identities. On the other hand, there doesn't appear to be any reason to categorically protect a right to sell organs under this approach, either. Organ donation is not a particularly culturally salient practice, nor does it seem to involve physical experiences that are part of identity exploration, the way sexual acts arguably do. Moreover, most people donating organs are anesthetized during the process—it is not a bodily experience in which the donor is generally attempting to change or control his or her subjectivity, even temporarily. Thus, it is neither particularly "personal" in the sense of importance to subjective experience, nor particularly "political" in the sense of identity performative. There may be traditional utilitarian concerns that would lead to bans on organ selling and other commodifications of the body, such as selling blood. The economic stability of a community and public health concerns are two potential reasons. And there may be traditional utilitarian concerns that would lead to permitting organ selling or other commodifications such as selling blood—we might want to increase the supply of organs, for instance. But these concerns need not be couched in terms of a fundamental right to bodily integrity, human dignity, or autonomy. H. Animal-Human and Plant-Human Chimeras What about the patenting of animal-human or plant-human chimeras, or transgenic entities,224 that has raised so much new concern over assigning the legal status of property to persons or then* parts?225 If an animal-human or plant-human chimera is capable of cultural interaction and affiliation, or of identity group formation and reformation, then it would seem that the cultural velocity principle would require us to forbid patent owners from controlling these entities in these activities. It is important to note here that because of the way I have grounded the rights we protect under law, I am not requiring these entities to have "human intelligence" or to be capable of full political participation in order to be possessed of rights. Thus, my theory also protects almost all persons with disabilities, including those with mental disabilities. Even if a person with a severe mental disability never develops to the stage of traditional political participation, he is capable of identity performance and cultural affiliation, as well as of social attachments that are instruc-

224. See Munzer, supra note 57, at 124 (providing definitions of these terms). 225. See, e.g., Bagley, supra note 2, at 546; see also supra notes 50, 60, 62-64, 66 and accompanying text.

128

The Right to Bodily Integrity

56

DENVER UNIVERSITY LAW REVIEW

[Vol. 87

tive and useful to society.226 But some minimal level of "intelligence" or cognitive processing is probably required for a being to attain the kinds of identities or bodily identity performances that could contribute to our cultural evolution. Although a proper conception of how the body relates to rights may ultimately prevent a patent-holder from exercising control over the beings she creates, the principle I have articulated would not necessarily prevent a patent holder from preventing another person or company from producing identical beings for the duration of the patent. This portion of the patent right does not seem to lastingly affect our interest in cultural evolution or cultural velocity. Thus, a patent holder in an animal-human chimera or transgenic creature might see his or her patent rights diminished, but not destroyed, under a proper conception of the body's relationship to fundamental rights. It may seem strange for a company to hold a patent in the method of producing an entity that has intelligence, interacts with others, and is a member of society. But this state of affairs is not without analogy in laws with which we are familiar. Not long ago, children were treated like the property of their fathers.227 But parents do not exercise absolute dominion over their children. For instance, parents cannot abuse or neglect their children in the United States. And even in the past, fathers had duties of care to their children.228 Moreover, once children reach adulthood, parents exercise no dominion or control over their children at all. And yet, this recognition that parents should not have total control over their children need not stop us from using property rights to govern control over embryos that parents have contributed to genetically. Allowing a parent to sell an embryo or donate rights in the embryo to another parent is not the same as allowing a parent to exercise dominion over a child.229

CONCLUSION The problem of property and freedom of contract threatening fundamental rights is not new. However, the physical merger of humans and non-humans is about to become prominent. Thus, we can no longer subscribe to the fiction that by drawing a sharp line between humans and the 226. See NUSSBAUM, supra note 79, at 99, 129 (describing her "conception of the person as a social animal, whose dignity does not derive from an idealized rationality," and also "the advantage of understanding humanity and its diversity that comes from associating with mentally disabled people on terms of mutual respect and reciprocity"). 227. See MARY ANN MASON, FROM FATHER'S PROPERTY TO CHILDREN'S RIGHTS: THE HISTORY OF CHILD CUSTODY IN THE UNITED STATES 1-13 (1994) (describing the fathers' custody over children as similar to the master/servant relationship, which involved duties of care, as well as the ability to contract out and profit from a servant's labor). 228. Id. at 12-13. 229. See Dan L. Burk, Patenting Transgenic Human Embryos: A Nonuse Cost Perspective, 30 HOUS. L. REV. 1597, 1648 (1993) ("[T]he holder of a patent for a transgenic human being could presumably prevent others from making, using, or selling such a transgenic human being, but this does not mean that the patent holder could impress the patented person into servitude or bondage.").

The Right to Bodily Integrity

2009]

AGAINST THE RIGHT TO BODILY INTEGRITY

129

57

rest of the world, and prohibiting the commodification of the human, we have sufficiently protected the need for diverse exercises of human agency against property rights. Property rights and freedom of contract have always threatened to stifle us via our bodies, such as by constructing us as "disabled" rather than "abled," or by determining whether we will need to perform physical labor to survive. We must accept that the line between humans and property is being blurred, and that already human self-control can be affected by the distribution of property rights. To deal with threats to physical self-control we cannot rely on the formal sanctity of the human body as separate from property. At the same time, we cannot rely solely on unregulated, autonomy-based, property-like rights in the body. For the same reasons that all forms of property are regulated, and do not entail sole dominion, property-like rights in one's body should also sometimes be regulated. We instead need a conception of rights that would simultaneously protect the diverse set of bodily choices that form individuals' identities and cultural affiliations, while using the regulation of property and contract to protect against a few actors obtaining monopolies over the subjectivities and identities of others. But because we are at least in part products of technology, our rights to control our own subjectivities or to form diverse identities cannot be protected by any kind of neat "right to bodily integrity" or autonomy over the natural, human body.

This page intentionally left blank

Part II Pregnancy and Reproduction

This page intentionally left blank

[4] A Defense of Abortion1 JUDITH JARVIS THOMSON

Most opposition to abortion relies on the premise that the fetus is a human being, a person, from the moment of conception. The premise is argued for, but, as I think, not well. Take, for example, the most common argument. We are asked to notice that the development of a human being from conception through birth into childhood is continuous; then it is said that to draw a line, to choose a point in this development and say "before this point the thing is not a person, after this point it is a person" is to make an arbitrary choice, a choice for which in the nature of things no good reason can be given. It is concluded that the fetus is, or anyway that we had better say it is, a person from the moment of conception. But this conclusion does not follow. Similar things might be said about the development of an acorn into an oak tree, and it does not follow that acorns are oak trees, or that we had better say they are. Arguments of this form are sometimes called "slippery slope arguments"—the phrase is perhaps self-explanatory—and it is dismaying that opponents of abortion rely on them so heavily and uncritically. I am inclined to agree, however, that the prospects for "drawing a line" in the development of the fetus look dim. I am inclined to think also that we shall probably have to agree that the fetus has already become a human person well before birth. Indeed, it comes as a surprise when one first learns how early in its life it begins to acquire human characteristics. By the tenth week, for example, it already has i. I am very much indebted to James Thomson for discussion, criticism, and many helpful suggestions.

134

The Right to Bodily Integrity

48

Philosophy & Public Affairs

a face, arms and legs, fingers and toes; it has internal organs, and brain activity is detectable.2 On the other hand, I think that the premise is false, that the fetus is not a person from the moment of conception. A newly fertilized ovum, a newly implanted clump of cells, is no more a person than an acorn is an oak tree. But I shall not discuss any of this. For it seems to me to be of great interest to ask what happens if, for the sake of argument, we allow the premise. How, precisely, are we supposed to get from there to the conclusion that abortion is morally impermissible? Opponents of abortion commonly spend most of their time establishing that the fetus is a person, and hardly any time explaining the step from there to the impermissibility of abortion. Perhaps they think the step too simple and obvious to require much comment. Or perhaps instead they are simply being economical in argument. Many of those who defend abortion rely on the premise that the fetus is not a person, but only a bit of tissue that will become a person at birth; and why pay out more arguments than you have to? Whatever the explanation, I suggest that the step they take is neither easy nor obvious, that it calls for closer examination than it is commonly given, and that when we do give it this closer examination we shall feel inclined to reject it. I propose, then, that we grant that the fetus is a person, from the moment of conception. How does the argument go from here? Something like this, I take it. Every person has a right to life. So the fetus has a right to life. No doubt the mother has a right to decide what shall happen in and to her body; everyone would grant that. But surely a person's right to life is stronger and more stringent than the mother's right to decide what happens in and to her body, and so outweighs it. So the fetus may not be killed; an abortion may not be performed. It sounds plausible. But now let me ask you to imagine this. You wake up in the morning and find yourself back to back in bed with an unconscious violinist. A famous unconscious violinist. He has been found to have a fatal kidney ailment, and the Society of Music Lovers 2. Daniel Callahan, Abortion: Law, Choice and Morality (New York, 1970), p. 373. This book gives a fascinating survey of the available information on abortion. The Jewish tradition is surveyed in David M. Feldman, Birth Control in Jewish Law (New York, 1968), Part 5, the Catholic tradition in John T. Noonan, Jr., "An Almost Absolute Value in History," in The Morality of Abortion, ed. John T. Noonan, Jr. (Cambridge, Mass., 1970).

The Right to Bodily Integrity

49

A Defense of Abortion

has canvassed all the available medical records and found that you alone have the right blood type to help. They have therefore kidnapped you, and last night the violinist's circulatory system was plugged into yours, so that your kidneys can be used to extract poisons from his blood as well as your own. The director of the hospital now tells you, "Look, we're sorry the Society of Music Lovers did this to you—we would never have permitted it if we had known. But still, they did it, and the violinist now is plugged into you. To unplug you would be to kill him. But never mind, it's only for nine months. By then he will have recovered from his ailment, and can safely be unplugged from you." Is it morally incumbent on you to accede to this situation? No doubt it would be very nice of you if you did, a great kindness. But do you have to accede to it? What if it were not nine months, but nine years? Or longer still? What if the director of the hospital says, 'Tough luck, I agree, but you've now got to stay in bed, with the violinist plugged into you, for the rest of your life. Because remember this. All persons have a right to life, and violinists are persons. Granted you have a right to decide what happens in and to your body, but a person's right to life outweighs your right to decide what happens in and to your body. So you cannot ever be unplugged from him." I imagine you would regard this as outrageous, which suggests that something really is wrong with that plausible-sounding argument I mentioned a moment ago. In this case, of course, you were kidnapped; you didn't volunteer for the operation that plugged the violinist into your kidneys. Can those who oppose abortion on the ground I mentioned make an exception for a pregnancy due to rape? Certainly. They can say that persons have a right to life only if they didn't come into existence because of rape; or they can say that all persons have a right to life, but that some have less of a right to life than others, in particular, that those who came into existence because of rape have less. But these statements have a rather unpleasant sound. Surely the question of whether you have a right to life at all, or how much of it you have, shouldn't turn on the question of whether or not you are the product of a rape. And in fact the people who oppose abortion on the ground I mentioned do not make this distinction, and hence do not make an exception in case of rape.

135

136

The Right to Bodily Integrity

50

Philosophy & Public Affairs

Nor do they make an exception for a case in which the mother has to spend the nine months of her pregnancy in bed. They would agree that would be a great pity, and hard on the mother; but all the same, all persons have a right to life, the fetus is a person, and so on. I suspect, in fact, that they would not make an exception for a case in which, miraculously enough, the pregnancy went on for nine years, or even the rest of the mother's life. Some won't even make an exception for a case in which continuation of the pregnancy is likely to shorten the mother's life; they regard abortion as impermissible even to save the mother's life. Such cases are nowadays very rare, and many opponents of abortion do not accept this extreme view. All the same, it is a good place to begin: a number of points of interest come out in respect to it. i. Let us call the view that abortion is impermissible even to save the mother's life "the extreme view." I want to suggest first that it does not issue from the argument I mentioned earlier without the addition of some fairly powerful premises. Suppose a woman has become pregnant, and now learns that she has a cardiac condition such that she will die if she carries the baby to term. What may be done for her? The fetus, being a person, has a right to life, but as the mother is a person too, so has she a right to life. Presumably they have an equal right to life. How is it supposed to come out that an abortion may not be performed? If mother and child have an equal right to life, shouldn't we perhaps flip a coin? Or should we add to the mother's right to life her right to decide what happens in and to her body, which everybody seems to be ready to grant—the sum of her rights now outweighing the fetus' right to life? The most familiar argument here is the following. We are told that performing the abortion would be directly killing3 the child, whereas doing nothing would not be killing the mother, but only letting her die. Moreover, in killing the child, one would be killing an innocent person, for the child has committed no crime, and is not aiming at his mother's death. And then there are a variety of ways in which this 3. The term "direct" in the arguments I refer to is a technical one. Roughly, what is meant by "direct killing" is either killing as an end in itself, or killing as a means to some end, for example, the end of saving someone else's life. See note 6, below, for an example of its use.

The Right to Bodily Integrity

51

A Defense of Abortion

might be continued. (i) But as directly killing an innocent person is always and absolutely impermissible, an abortion may not be performed. Or, (2) as directly killing an innocent person is murder, and murder is always and absolutely impermissible, an abortion may not be performed.4 Or, (3) as one's duty to refrain from directly killing an innocent person is more stringent than one's duty to keep a person from dying, an abortion may not be performed. Or, (4) if one's only options are directly killing an innocent person or letting a person die, one must prefer letting the person die, and thus an abortion may not be performed.5 Some people seem to have thought that these are not further premises which must be added if the conclusion is to be reached, but that they follow from the very fact that an innocent person has a right to life.6 But this seems to me to be a mistake, and perhaps the simplest way to show this is to bring out that while we must certainly grant that innocent persons have a right to life, the theses in (i) through (4) are all false. Take (2), for example. If directly killing an innocent person is murder, and thus is impermissible, then the mother's directly killing the innocent person inside her is murder, and thus is 4. Cf. Encyclical Letter of Pope Pius XI on Christian Marriage, St. Paul Editions (Boston, n.d.), P- 32: "however much we may pity the mother whose health and even life is gravely imperiled in the performance of the duty allotted to her by nature, nevertheless what could ever be a sufficient reason for excusing in any way the direct murder of the innocent? This is precisely what we are dealing with here." Noonan (The Morality of Abortion, p. 43) reads this as follows: "What cause can ever avail to excuse in any way the direct killing of the innocent? For it is a question of that." 5. The thesis in (4) is in an interesting way weaker than those in (i), (2), and (3): they rule out abortion even in cases in which both mother and child will die if the abortion is not performed. By contrast, one who held the view expressed in (4) could consistently say that one needn't prefer letting two persons die to killing one. 6. Cf. the following passage from Pius XII, Address to the Italian Catholic Society of Midwives: "The baby in the maternal breast has the right to life immediately from God.—Hence there is no man, no human authority, no science, no medical, eugenic, social, economic or moral 'indication* which can establish or grant a valid juridical ground for a direct deliberate disposition of an innocent human life, that is a disposition which looks to its destruction either as an end or as a means to another end perhaps in itself not illicit.—The baby, still not born, is a man in the same degree and for the same reason as the mother" (quoted in Noonan, The Morality of Abortion, p. 45).

137

138

The Right to Bodily Integrity

52

Philosophy & Public Affairs

impermissible. But it cannot seriously be thought to be murder if the mother performs an abortion on herself to save her life. It cannot seriously be said that she must refrain, that she must sit passively by and wait for her death. Let us look again at the case of you and the violinist. There you are, in bed with the violinist, and the director of the hospital says to you, "It's all most distressing, and I deeply sympathize, but you see this is putting an additional strain on your kidneys, and youll be dead within the month. But you have to stay where you are all the same. Because unplugging you would be directly killing an innocent violinist, and that's murder, and that's impermissible." If anything in the world is true, it is that you do not commit murder, you do not do what is impermissible, if you reach around to your back and unplug yourself from that violinist to save your life. The main focus of attention in writings on abortion has been on what a third party may or may not do in answer to a request from a woman for an abortion. This is in a way understandable. Things being as they are, there isn't much a woman can safely do to abort herself. So the question asked is what a third party may do, and what the mother may do, if it is mentioned at all, is deduced, almost as an afterthought, from what it is concluded that third parties may do. But it seems to me that to treat the matter in this way is to refuse to grant to the mother that very status of person which is so firmly insisted on for the fetus. For we cannot simply read off what a person may do from what a third party may do. Suppose you find yourself trapped in a tiny house with a growing child. I mean a very tiny house, and a rapidly growing child—you are already up against the wall of the house and in a few minutes you'll be crushed to death. The child on the other hand won't be crushed to death; if nothing is done to stop him from growing hell be hurt, but in the end he'll simply burst open the house and walk out a free man. Now I could well understand it if a bystander were to say, "There's nothing we can do for you. We cannot choose between your life and his, we cannot be the ones to decide who is to live, we cannot intervene." But it cannot be concluded that you too can do nothing, that you cannot attack it to save your life. However innocent the child may be, you do not have to wait passively while it crushes you to death. Perhaps a pregnant woman is vaguely felt to have the status of house, to which we don't allow the

The Right to Bodily Integrity

53

A Defense of Abortion

right of self-defense. But if the woman houses the child, it should be remembered that she is a person who houses it. I should perhaps stop to say explicitly that I am not claiming that people have a right to do anything whatever to save their lives. I think, rather, that there are drastic limits to the right of self-defense. If someone threatens you with death unless you torture someone else to death, I think you have not the right, even to save your life, to do so. But the case under consideration here is very different. In our case there are only two people involved, one whose life is threatened, and one who threatens it. Both are innocent: the one who is threatened is not threatened because of any fault, the one who threatens does not threaten because of any fault. For this reason we may feel that we bystanders cannot intervene. But the person threatened can. In sum, a woman surely can defend her life against the threat to it posed by the unborn child, even if doing so involves its death. And this shows not merely that the theses in (i) through (4) are false; it shows also that the extreme view of abortion is false, and so we need not canvass any other possible ways of arriving at it from the argument I mentioned at the outset. 2. The extreme view could of course be weakened to say that while abortion is permissible to save the mother's life, it may not be performed by a third party, but only by the mother herself. But this cannot be right either. For what we have to keep in mind is that the mother and the unborn child are not like two tenants in a small house which has, by an unfortunate mistake, been rented to both: the mother owns the house. The fact that she does adds to the offensiveness of deducing that the mother can do nothing from the supposition that third parties can do nothing. But it does more than this: it casts a bright light on the supposition that third parties can do nothing. Certainly it lets us see that a third party who says "I cannot choose between you" is fooling himself if he thinks this is impartiality. If Jones has found and fastened on a certain coat, which he needs to keep him from freezing, but which Smith also needs to keep him from freezing, then it is not impartiality that says "I cannot choose between you" when Smith owns the coat. Women have said again and again "This body is my body!" and they have reason to feel angry, reason to feel that it has been like shouting into the wind. Smith, after all, is

139

140

The Right to Bodily Integrity

54

Philosophy & Public Affairs

hardly likely to bless us if we say to him, "Of course it's your coat, anybody would grant that it is. But no one may choose between you and Jones who is to have it/' We should really ask what it is that says "no one may choose" in the face of the fact that the body that houses the child is the mother's body. It may be simply a failure to appreciate this fact. But it may be something more interesting, namely the sense that one has a right to refuse to lay hands on people, even where it would be just and fair to do so, even where justice seems to require that somebody do so. Thus justice might call for somebody to get Smith's coat back from Jones, and yet you have a right to refuse to be the one to lay hands on Jones, a right to refuse to do physical violence to him. This, I think, must be granted. But then what should be said is not "no one may choose," but only "I cannot choose," and indeed not even this, but "I will not act," leaving it open that somebody else can or should, and in particular that anyone in a position of authority, with the job of securing people's rights, both can and should. So this is no difficulty. I have not been arguing that any given third party must accede to the mother's request that he perform an abortion to save her life, but only that he may. I suppose that in some views of human life the mother's body is only on loan to her, the loan not being one which gives her any prior claim to it. One who held this view might well think it impartiality to say "I cannot choose." But I shall simply ignore this possibility. My own view is that if a human being has any just, prior claim to anything at all, he has a just, prior claim to his own body. And perhaps this needn't be argued for here anyway, since, as I mentioned, the arguments against abortion we are looking at do grant that the woman has a right to decide what happens in and to her body. But although they do grant it, I have tried to show that they do not take seriously what is done in granting it. I suggest the same thing will reappear even more clearly when we turn away from cases in which the mother's life is at stake, and attend, as I propose we now do, to the vastly more common cases in which a woman wants an abortion for some less weighty reason than preserving her own life. 3. Where the mother's life is not at stake, the argument I mentioned at the outset seems to have a much stronger pull. "Everyone

The Right to Bodily Integrity

55

A Defense of Abortion

has a right to life, so the unborn person has a right to life." And isn't the child's right to life weightier than anything other than the mother's own right to life, which she might put forward as ground for an abortion? This argument treats the right to life as if it were unproblematic. It is not, and this seems to me to be precisely the source of the mistake. For we should now, at long last, ask what it comes to, to have a right to life. In some views having a right to life includes having a right to be given at least the bare minimum one needs for continued life. But suppose that what in fact is the bare minimum a man needs for continued life is something he has no right at all to be given? If I am sick unto death, and the only thing that will save my life is the touch of Henry Fonda's cool hand on my fevered brow, then all the same, I have no right to be given the touch of Henry Fonda's cool hand on my fevered brow. It would be frightfully nice of him to fly in from the West Coast to provide it. It would be less nice, though no doubt well meant, if my friends flew out to the West Coast and carried Henry Fonda back with them. But I have no right at all against anybody that he should do this for me. Or again, to return to the story I told earlier, the fact that for continued life that violinist needs the continued use of your kidneys does not establish that he has a right to be given the continued use of your kidneys. He certainly has no right against you that you should give him continued use of your kidneys. For nobody has any right to use your kidneys unless you give him such a right; and nobody has the right against you that you shall give him this right—if you do allow him to go on using your kidneys, this is a kindness on your part, and not something he can claim from you as his due. Nor has he any right against anybody else that they should give him continued use of your kidneys. Certainly he had no right against the Society of Music Lovers that they should plug him into you in the first place. And if you now start to unplug yourself, having learned that you will otherwise have to spend nine years in bed with him, there is nobody in the world who must try to prevent you, in order to see to it that he is given something he has a right to be given. Some people are rather stricter about the right to life. In their view, it does not include the right to be given anything, but amounts to,

141

142

The Right to Bodily Integrity

56

Philosophy & Public Affairs

and only to, the right not to be killed by anybody. But here a related difficulty arises. If everybody is to refrain from killing that violinist, then everybody must refrain from doing a great many different sorts of things. Everybody must refrain from slitting his throat, everybody must refrain from shooting him—and everybody must refrain from unplugging you from him. But does he have a right against everybody that they shall refrain from unplugging you from him? To refrain from doing this is to allow him to continue to use your kidneys. It could be argued that he has a right against us that we should allow him to continue to use your kidneys. That is, while he had no right against us that we should give him the use of your kidneys, it might be argued that he anyway has a right against us that we shall not now intervene and deprive him of the use of your kidneys. I shall come back to third-party interventions later. But certainly the violinist has no right against you that you shall allow him to continue to use your kidneys. As I said, if you do allow him to use them, it is a kindness on your part, and not something you owe him. The difficulty I point to here is not peculiar to the right to life. It reappears in connection with aU the other natural rights; and it is something which an adequate account of rights must deal with. For present purposes it is enough just to draw attention to it. But I would stress that I am not arguing that people do not have a right to life— quite to the contrary, it seems to me that the primary control we must place on the acceptability of an account of rights is that it should turn out in that account to be a truth that all persons have a right to life. I am arguing only that having a right to life does not guarantee having either a right to be given the use of or a right to be allowed continued use of another person's body—even if one needs it for life itself. So the right to life will not serve the opponents of abortion in the very simple and clear way in which they seem to have thought it would. 4. There is another way to bring out the difficulty. In the most ordinary sort of case, to deprive someone of what he has a right to is to treat him unjustly. Suppose a boy and his small brother are jointly given a box of chocolates for Christmas. If the older boy takes the box and refuses to give his brother any of the chocolates, he is unjust to him, for the brother has been given a right to half of them. But

The Right to Bodily Integrity

57

A Defense of Abortion

suppose that, having learned that otherwise it means nine years in bed with that violinist, you unplug yourself from him. You surely are not being unjust to him, for you gave him no right to use your kidneys, and no one else can have given him any such right. But we have to notice that in unplugging yourself, you are killing him; and violinists, like everybody else, have a right to life, and thus in the view we were considering just now, the right not to be killed. So here you do what he supposedly has a right you shall not do, but you do not act unjustly to him in doing it. The emendation which may be made at this point is this: the right to life consists not in the right not to be killed, but rather in the right not to be killed unjustly. This runs a risk of circularity, but never mind: it would enable us to square the fact that the violinist has a right to life with the fact that you do not act unjustly toward him in unplugging yourself, thereby killing him. For if you do not kill him unjustly, you do not violate his right to life, and so it is no wonder you do him no injustice. But if this emendation is accepted, the gap in the argument against abortion stares us plainly in the face: it is by no means enough to show that the fetus is a person, and to remind us that all persons have a right to life—we need to be shown also that killing the fetus violates its right to life, i.e., that abortion is unjust killing. And is it? I suppose we may take it as a datum that in a case of pregnancy due to rape the mother has not given the unborn person a right to the use of her body for food and shelter. Indeed, in what pregnancy could it be supposed that the mother has given the unborn person such a right? It is not as if there were unborn persons drifting about the world, to whom a woman who wants a child says "I invite you in/' But it might be argued that there are other ways one can have acquired a right to the use of another person's body than by having been invited to use it by that person. Suppose a woman voluntarily indulges in intercourse, knowing of the chance it will issue in pregnancy, and then she does become pregnant; is she not in part responsible for the presence, in fact the very existence, of the unborn person inside her? No doubt she did not invite it in. But doesn't her partial responsibility for its being there itself give it a right to the use of her

143

144

The Right to Bodily Integrity

58

Philosophy & Public Affairs

body?7 If so, then her aborting it would be more like the boy's taking away the chocolates, and less like your unplugging yourself from the violinist—doing so would be depriving it of what it does have a right to, and thus would be doing it an injustice. And then, too, it might be asked whether or not she can kill it even to save her own life: If she voluntarily called it into existence, how can she now kill it, even in self-defense? The first thing to be said about this is that it is something new. Opponents of abortion have been so concerned to make out the independence of the fetus, in order to establish that it has a right to life, just as its mother does, that they have tended to overlook the possible support they might gain from making out that the fetus is dependent on the mother, in order to establish that she has a special kind of responsibility for it, a responsibility that gives it rights against her which are not possessed by any independent person—such as an ailing violinist who is a stranger to her. On the other hand, this argument would give the unborn person a right to its mother's body only if her pregnancy resulted from a voluntary act, undertaken in full knowledge of the chance a pregnancy might result from it. It would leave out entirely the unborn person whose existence is due to rape. Pending the availability of some further argument, then, we would be left with the conclusion that unborn persons whose existence is due to rape have no right to the use of their mothers' bodies, and thus that aborting them is not depriving them of anything they have a right to and hence is not unjust killing. And we should also notice that it is not at all plain that this argument really does go even as far as it purports to. For there are cases and cases, and the details make a difference. If the room is stuffy, and I therefore open a window to air it, and a burglar climbs in, it would be absurd to say,"Ah, now he can stay, she's given him a right to the use of her house—for she is partially responsible for his presence there, having voluntarily done what enabled him to get in, in full knowledge that there are such things as burglars, and that burglars 7. The need for a discussion of this argument was brought home to me by members of the Society for Ethical and Legal Philosophy, to whom this paper was originally presented.

The Right to Bodily Integrity

59

A Defense of Abortion

burgle." It would be still more absurd to say this if I had had bars installed outside my windows, precisely to prevent burglars from getting in, and a burglar got in only because of a defect in the bars. It remains equally absurd if we imagine it is not a burglar who climbs in, but an innocent person who blunders or falls in. Again, suppose it were like this: people-seeds drift about in the air like pollen, and if you open your windows, one may drift in and take root in your carpets or upholstery. You don't want children, so you fix up your windows with fine mesh screens, the very best you can buy. As can happen, however, and on very, very rare occasions does happen, one of the screens is defective; and a seed drifts in and takes root. Does the person-plant who now develops have a right to the use of your house? Surely not—despite the fact that you voluntarily opened your windows, you knowingly kept carpets and upholstered furniture, and you knew that screens were sometimes defective. Someone may argue that you are responsible for its rooting, that it does have a right to your house, because after all you could have lived out your life with bare floors and furniture, or with sealed windows and doors. But this won't do—for by the same token anyone can avoid a pregnancy due to rape by having a hysterectomy, or anyway by never leaving home without a (reliable!) army. It seems to me that the argument we are looking at can establish at most that there are some cases in which the unborn person has a right to the use of its mother's body, and therefore some cases in which abortion is unjust killing. There is room for much discussion and argument as to precisely which, if any. But I think we should sidestep this issue and leave it open, for at any rate the argument certainly does not establish that all abortion is unjust killing. 5. There is room for yet another argument here, however. We surely must all grant that there may be cases in which it would be morally indecent to detach a person from your body at the cost of his life. Suppose you learn that what the violinist needs is not nine years of your life, but only one hour: all you need do to save his life is to spend one hour in that bed with him. Suppose also that letting him use your kidneys for that one hour would not affect your health in the slightest. Admittedly you were kidnapped. Admittedly you did not give

145

146

The Right to Bodily Integrity

60

Philosophy & Public Affairs

anyone permission to plug him into you. Nevertheless it seems to me plain you ought to allow him to use your kidneys for that hour—it would be indecent to refuse. Again, suppose pregnancy lasted only an hour, and constituted no threat to life or health. And suppose that a woman becomes pregnant as a result of rape. Admittedly she did not voluntarily do anything to bring about the existence of a child. Admittedly she did nothing at all which would give the unborn person a right to the use of her body. All the same it might well be said, as in the newly emended violinist story, that she ought to allow it to remain for that hour—that it would be indecent in her to refuse. Now some people are inclined to use the term "right" in such a way that it follows from the fact that you ought to allow a person to use your body for the hour he needs, that he has a right to use your body for the hour he needs, even though he has not been given that right by any person or act. They may say that it follows also that if you refuse, you act unjustly toward him. This use of the term is perhaps so common that it cannot be called wrong; nevertheless it seems to me to be an unfortunate loosening of what we would do better to keep a tight rein on. Suppose that box of chocolates I mentioned earlier had not been given to both boys jointly, but was given only to the older boy. There he sits, stolidly eating his way through the box, his small brother watching enviously. Here we are likely to say "You ought not to be so mean. You ought to give your brother some of those chocolates." My own view is that it just does not follow from the truth of this that the brother has any right to any of the chocolates. If the boy refuses to give his brother any, he is greedy, stingy, callous—but not unjust. I suppose that the people I have in mind will say it does follow that the brother has a right to some of the chocolates, and thus that the boy does act unjustly if he refuses to give his brother any. But the effect of saying this is to obscure what we should keep distinct, namely the difference between the boy's refusal in this case and the boy's refusal in the earlier case, in which the box was given to both boys jointly, and in which the small brother thus had what was from any point of view clear title to half. A further objection to so using the term "right" that from the fact that A ought to do a thing for B, it follows that B has a right against A

The Right to Bodily Integrity

61

A Defense of Abortion

that A do it for him, is that it is going to make the question of whether or not a man has a right to a thing turn on how easy it is to provide him with it; and this seems not merely unfortunate, but morally unacceptable. Take the case of Henry Fonda again. I said earlier that I had no right to the touch of his cool hand on my fevered brow, even though I needed it to save my life. I said it would be frightfully nice of him to fly in from the West Coast to provide me with it, but that I had no right against him that he should do so. But suppose he isn't on the West Coast. Suppose he has only to walk across the room, place a hand briefly on my brow—and lo, my life is saved. Then surely he ought to do it, it would be indecent to refuse. Is it to be said "Ah, well, it follows that in this case she has a right to the touch of his hand on her brow, and so it would be an injustice in him to refuse"? So that I have a right to it when it is easy for him to provide it, though no right when it's hard? It's rather a shocking idea that anyone's rights should fade away and disappear as it gets harder and harder to accord them to him. So my own view is that even though you ought to let the violinist use your kidneys for the one hour he needs, we should not conclude that he has a right to do so—we should say that if you refuse, you are, like the boy who owns all the chocolates and will give none away, self-centered and callous, indecent in fact, but not unjust. And similarly, that even supposing a case in which a woman pregnant due to rape ought to allow the unborn person to use her body for the hour he needs, we should not conclude that he has a right to do so; we should conclude that she is self-centered, callous, indecent, but not unjust, if she refuses. The complaints are no less grave; they are just different. However, there is no need to insist on this point. If anyone does wish to deduce 'lie has a right" from "you ought," then all the same he must surely grant that there are cases in which it is not morally required of you that you allow that violinist to use your kidneys, and in which he does not have a right to use them, and in which you do not do him an injustice if you refuse. And so also for mother and unborn child. Except in such cases as the unborn person has a right to demand it—and we were leaving open the possibility that there may be such cases—nobody is morally required to make large sacrifices, of health, of all other interests and concerns, of all other duties

147

148

The Right to Bodily Integrity

62

Philosophy & Public Affairs

and commitments, for nine years, or even for nine months, in order to keep another person alive. 6. We have in fact to distinguish between two kinds of Samaritan: the Good Samaritan and what we might call the Minimally Decent Samaritan. The story of the Good Samaritan, you will remember, goes like this: A certain man went down from Jerusalem to Jericho, and fell among thieves, which stripped him of his raiment, and wounded him, and departed, leaving him half dead. And by chance there came down a certain priest that way; and when he saw him, he passed by on the other side. And likewise a Levite, when he was at the place, came and looked on him, and passed by on the other side. But a certain Samaritan, as he journeyed, came where he was; and when he saw him he had compassion on him. And went to him, and bound up his wounds, pouring in oil and wine, and set him on his own beast, and brought him to an inn, and took care of him. And on the morrow, when he departed, he took out two pence, and gave them to the host, and said unto him, "Take care of him; and whatsoever thou spendest more, when I come again, I will repay thee." (Luke 10:30-35) The Good Samaritan went out of his way, at some cost to himself, to help one in need of it. We are not told what the options were, that is, whether or not the priest and the Levite could have helped by doing less than the Good Samaritan did, but assuming they could have, then the fact they did nothing at all shows they were not even Minimally Decent Samaritans, not because they were not Samaritans, but because they were not even minimally decent. These things are a matter of degree, of course, but there is a difference, and it comes out perhaps most clearly in the story of Kitty Genovese, who, as you will remember, was murdered while thirtyeight people watched or listened, and did nothing at all to help her. A Good Samaritan would have rushed out to give direct assistance

The Right to Bodily Integrity

63

A Defense of Abortion

against the murderer. Or perhaps we had better allow that it would have been a Splendid Samaritan who did this, on the ground that it would have involved a risk of death for himself. But the thirty-eight not only did not do this, they did not even trouble to pick up a phone to call the police. Minimally Decent Samaritanism would call for doing at least that, and their not having done it was monstrous. After telling the story of the Good Samaritan, Jesus said "Go, and do thou likewise/' Perhaps he meant that we are morally required to act as the Good Samaritan did. Perhaps he was urging people to do more than is morally required of them. At all events it seems plain that it was not morally required of any of the thirty-eight that he rush out to give direct assistance at the risk of his own life, and that it is not morally required of anyone that he give long stretches of his lifenine years or nine months—to sustaining the life of a person who has no special right (we were leaving open the possibility of this) to demand it. Indeed, with one rather striking class of exceptions, no one in any country in the world is legally required to do anywhere near as much as this for anyone else. The class of exceptions is obvious. My main concern here is not the state of the law in respect to abortion, but it is worth drawing attention to the fact that in no state in this country is any man compelled by law to be even a Minimally Decent Samaritan to any person; there is no law under which charges could be brought against the thirty-eight who stood by while Kitty Genovese died. By contrast, in most states in this country women are compelled by law to be not merely Minimally Decent Samaritans, but Good Samaritans to unborn persons inside them. This doesn't by itself settle anything one way or the other, because it may well be argued that there should be laws in this country—as there are in many European countriescompelling at least Minimally Decent Samaritanism.8 But it does show that there is a gross injustice in the existing state of the law. And it shows also that the groups currently working against liberalization of abortion laws, in fact working toward having it declared unconstitu8. For a discussion of the difficulties involved, and a survey of the European experience with such laws, see The Good Samaritan and the Law, ed. James M. Ratcliffe (New York, 1966).

149

150

The Right to Bodily Integrity

64

Philosophy & Public Affairs

tional for a state to permit abortion, had better start working for the adoption of Good Samaritan laws generally, or earn the charge that they are acting in bad faith. I should think, myself, that Minimally Decent Samaritan laws would be one thing, Good Samaritan laws quite another, and in fact highly improper. But we are not here concerned with the law. What we should ask is not whether anybody should be compelled by law to be a Good Samaritan, but whether we must accede to a situation in which somebody is being compelled—by nature, perhaps—to be a Good Samaritan. We have, in other words, to look now at third-party interventions. I have been arguing that no person is morally required to make large sacrifices to sustain the life of another who has no right to demand them, and this even where the sacrifices do not include life itself; we are not morally required to be Good Samaritans or anyway Very Good Samaritans to one another. But what if a man cannot extricate himself from such a situation? What if he appeals to us to extricate him? It seems to me plain that there are cases in which we can, cases in which a Good Samaritan would extricate him. There you are, you were kidnapped, and nine years in bed with that violinist lie ahead of you. You have your own life to lead. You are sorry, but you simply cannot see giving up so much of your life to the sustaining of his. You cannot extricate yourself, and ask us to do so. I should have thought that—in light of his having no right to the use of your bodyit was obvious that we do not have to accede to your being forced to give up so much. We can do what you ask. There is no injustice to the violinist in our doing so. 7. Following the lead of the opponents of abortion, I have throughout been speaking of the fetus merely as a person, and what I have been asking is whether or not the argument we began with, which proceeds only from the fetus* being a person, really does establish its conclusion. I have argued that it does not. But of course there are arguments and arguments, and it may be said that I have simply fastened on the wrong one. It may be said that what is important is not merely the fact that the fetus is a person, but that it is a person for whom the woman has a special kind of responsibility issuing from the fact that she is its mother. And it might be argued that all my analogies are therefore irrelevant—for you do

The Right to Bodily Integrity

65

A Defense of Abortion

not have that special kind of responsibility for that violinist, Henry Fonda does not have that special kind of responsibility for me. And our attention might be drawn to the fact that men and women both are compelled by law to provide support for their children. I have in effect dealt (briefly) with this argument in section 4 above; but a (still briefer) recapitulation now may be in order. Surely we do not have any such "special responsibility" for a person unless we have assumed it, explicitly or implicitly. If a set of parents do not try to prevent pregnancy, do not obtain an abortion, and then at the time of birth of the child do not put it out for adoption, but rather take it home with them, then they have assumed responsibility for it, they have given it rights, and they cannot now withdraw support from it at the cost of its life because they now find it difficult to go on providing for it. But if they have taken all reasonable precautions against having a child, they do not simply by virtue of their biological relationship to the child who comes into existence have a special responsibility for it. They may wish to assume responsibility for it, or they may not wish to. And I am suggesting that if assuming responsibility for it would require large sacrifices, then they may refuse. A Good Samaritan would not refuse—or anyway, a Splendid Samaritan, if the sacrifices that had to be made were enormous. But then so would a Good Samaritan assume responsibility for that violinist; so would Henry Fonda, if he is a Good Samaritan, fly in from the West Coast and assume responsibility for me. 8. My argument will be found unsatisfactory on two counts by many of those who want to regard abortion as morally permissible. First, while I do argue that abortion is not impermissible, I do not argue that it is always permissible. There may well be cases in which carrying the child to term requires only Minimally Decent Samaritanism of the mother, and this is a standard we must not fall below. I am inclined to think it a merit of my account precisely that it does not give a general yes or a general no. It allows for and supports our sense that, for example, a sick and desperately frightened fourteen-year-old schoolgirl, pregnant due to rape, may of course choose abortion, and that any law which rules this out is an insane law. And it also allows for and supports our sense that in other cases resort to abortion is even positively indecent. It would be indecent in the woman to request an

151

152

The Right to Bodily Integrity

66

Philosophy & Public Affairs

abortion, and indecent in a doctor to perform it, if she is in her seventh month, and wants the abortion just to avoid the nuisance of postponing a trip abroad. The very fact that the arguments I have been drawing attention to treat all cases of abortion, or even all cases of abortion in which the mother's life is not at stake, as morally on a par ought to have made them suspect at the outset. Secondly, while I am arguing for the permissibility of abortion in some cases, I am not arguing for the right to secure the death of the unborn child. It is easy to confuse these two things in that up to a certain point in the life of the fetus it is not able to survive outside the mother's body; hence removing it from her body guarantees its death. But they are importantly different. I have argued that you are not morally required to spend nine months in bed, sustaining the life of that violinist; but to say this is by no means to say that if, when you unplug yourself, there is a miracle and he survives, you then have a right to turn round and slit his throat. You may detach yourself even if this costs him his life; you have no right to be guaranteed his death, by some other means, if unplugging yourself does not kill him. There are some people who will feel dissatisfied by this feature of my argument. A woman may be utterly devastated by the thought of a child, a bit of herself, put out for adoption and never seen or heard of again. She may therefore want not merely that the child be detached from her, but more, that it die. Some opponents of abortion are inclined to regard this as beneath contempt—thereby showing insensitivity to what is surely a powerful source of despair. All the same, I agree that the desire for the child's death is not one which anybody may gratify, should it turn out to be possible to detach the child alive. At this place, however, it should be remembered that we have only been pretending throughout that the fetus is a human being from the moment of conception. A very early abortion is surely not the killing of a person, and so is not dealt with by anything I have said here.

[5] A FEMINIST, KANTIAN CONCEPTION OF THE RIGHT TO BODILY INTEGRITY: The Cases of Abortion and Homosexuality HELGA VARDEN University of Illinois at Urbana-Champaign

INTRODUCTION Kant himself did not provide much direct help with regard to giving a philosophical account of the legal permissibility of abortion and homosexuality, and doubtless the feminist movement has been central to illuminating this lacuna in his thought. It seems fair to say that Kant s own writings are at best confusing and at worst of no help. To wit, in the midst of a theory of justice based on a fundamental respect for each person's innate right to freedom, we are faced with Kants brief mention of the fetus as a person upon conception, as well as his teleological and notoriously phobic statements about homosexuality.1 Still, a considered Kantian conception of abortion and homosexuality must be consistent with the overall structure of Kants theory of justice. I will argue that because of the analytic relation between the person and the body at the heart of Kant s political and legal theory, there is a fundamental commitment to a right to bodily integrity. This commitment entails that a consistent Kantian position defends both a right to abortion and a right to homosexual interaction. Indeed, Kants political and legal theory affirms a feminist- and queer-friendly conception of abortion and homosexuality that is worth taking seriously. Pregnant women and persons engaging in homosexual practices compose two groups that have been and still are among those most

154

The Right to Bodily Integrity 34

OUT FROM THE SHADOWS

severely subjected to coercive restrictions regarding their own bodies. From an historical point of view, it is a recent and rare phenomenon that a woman's right to abortion and a person's right to engage in homosexual interactions2 are recognized. Today, though most Western liberal states do recognize these rights, they are under continuous challenge—sometimes by violent protest—from various political and religious movements. Moreover, though liberal theories of justice typically defend women's rights to abortion and peoples rights to homosexual activity, these theories often struggle to capture the fundamental ground for these rights. For example, it appears hard for the liberal to say why and when only the woman and not the embryo/fetus has rights and why the right to certain sexual practices is not on par with rights to other preferences. Contemporary liberal theories of justice, therefore, struggle both to identify what distinguishes questions of abortion and sexual activities from other questions of right and thereby capture the gravity of the wrongdoing involved in coercively restricting homosexual interactions and abortion as such. I will argue that Kant's theory of justice is able to capture the fundamental ground for these rights in his understanding of the bodily integrity of the person. This Kantian position also presents a third alternative to the contemporary stalemate between those privileging the rights of the mother and those privileging the personhood of the embryo/ fetus. Just states will neither permit nor outlaw all abortions or sexual interactions, but rather will require all such laws to be reconcilable with the protection of each person's right to freedom.

1. THE P O I N T OF V I E W OF J U S T I C E IS NOT THE POINT OF VIEW OF ETHICS OR R E L I G I O N It is relatively uncontroversial to say that pregnancies and sexual activities constitute tremendously important aspects of our lives and so naturally constitute major concerns for both ethical3 and theological theories. In this chapter, however, I am concerned with neither the ethical nor religious value of pregnancies and sexual relations, nor the justifiability of various ethical and theological theories as they have been applied to these issues. Instead, I simply give an account of why, from the point of view of justice, it is especially wrong coercively to prevent, including by means of criminalization, abortion as such4 and homosexual activity. Thus, my account goes against several trends in contemporary thought.

The Right to Bodily Integrity RIGHT TO BODILY I N T E G R I T Y

155 3 5

For example, it is often assumed that an analysis of what is right and wrong from the point of view of ethics or theology will yield the same or at least similar results as an analysis from the point of view of justice. Or it is thought that conclusions drawn about what rights we have are dependent on conclusions drawn about what is ethically or religiously required. At least that is the presumption in a large proportion of the papers written on abortion and homosexual activity over the last four decades.51 also challenge the view that the rights to abortion and homosexuality are the result of prudential considerations or considerations of tolerance. According to this view, only by granting these rights can we peacefully coexist in a pluralist world given our different ethical and religious ideologies.6 Contrary to these dominant views, I will defend the claim that we cannot deny others a right to obtain an abortion as such or to engage in homosexual activity without thereby refusing to interact with them rightfully, namely, in a way reconcilable with their innate right to freedom. Justice is not the enforcement of a subsection of peoples ethical or religious duties, nor is it primarily about tolerance of different viewpoints in order to live together peaceably. Rather, justice concerns normative or rightful interaction in the world, that is, normative relations that are in principle enforceable. Even if we try, we cannot force people to be religiously good or to be ethically virtuous. All we can do through legal means is to ensure that when interacting people act in a way respectful of each others rights. Consequently, justice requires us to look at the issues from the point of view of enforceable rights and duties, which concern rights and duties that are consistent with each persons innate right to freedom. It is therefore entirely possible that what is rightfully enforceable is not coextensive with what is ethically justifiable or religiously defensible. At the foundation of Kant's conception of justice lies what Kant calls our "Only One Innate Right," namely each person's innate right to freedom (MM 6: 237). And each person's innate right to freedom is defined as her or his right to "independence from being constrained by another's choice...insofar as it [one's freedom] can coexist with the freedom of every other in accordance with a universal law" (ibid.).7 Importantly, one's right to freedom, for Kant, is something one is born with; it is not something one has before one is born. Hence, even if we concede either that the fetus is a person, as does Judith Jarvis Thomson in her seminal article on abortion, or that metaethical8 considerations require us to attribute personhood upon conception, as does Kant, we have not thereby established that we can justly criminalize abortion. This is not only a

156

The Right to Bodily Integrity 36

OUT FROM THE SHADOWS

point explicitly emphasized by Thomson but also one acknowledged by Kant when he maintains that the right to freedom is innate even though considerations of metaethics lead him to ascribe personhood upon conception. The important point is that conclusions of ethics are not necessarily also conclusions of justice. According to the Kantian conception of justice, ones right to freedom is the right to have one's interactions with others restricted only by universal laws (laws of freedom). For example, whether or not Kant himself and others considered some particular sexual ends to be more or less natural (and thus more or less virtuous) than others cannot be a relevant consideration when determining which ends people have a right to set with their own bodies—alone or consensually with others. A law enforcing a particular natural end for all is a contingent restriction and not a law of freedom. Therefore, it is an unjustifiable law according to Kant s own theory. It is for these kinds of reasons that we must ignore Kants teleological and homophobic statements when applying his theory of justice to the legal status of homosexual practices. In addition, we must make sense of Kants puzzling claims that personhood is attributed upon conception and yet the right to freedom is innate, namely something we are born with. The application of Kant's political and legal theory to the question of abortion and homosexuality, I argue below, turns on the fact that persons are embodied beings, which means that the limits of freedom insofar as we are persons must be extended to us insofar as we are embodied. Because we are embodied beings, and because the restrictions on abortion and homosexual activity we are considering are restrictions on what we can do with our own bodies, enforcing unjustifiable restrictions on homosexual activity and abortion denies homosexuals and women a right to freedom. What is more, it is to wrong their persons. And because the state, in establishing itself as a public authority, must provide conditions in which its citizens can interact rightfully, it cannot enforce such laws.

2. EMBODIED FREEDOM On the Kantian account, it is in virtue of being persons, or beings deemed capable of assuming responsibility for our actions, that notions of rights and duties are possible. And it is in virtue of being embodied that we must determine how we should interact in the empirical world. Justice, then, concerns how we—embodied persons—interact and can be forced

The Right to Bodily Integrity R I G H T TO BODILY I N T E G R I T Y

157 3 7

to interact normatively in space and time. Moreover, from the point of view of justice, the fact that we are embodied entails that the relation between my person and my body must be considered "analytic," that is, one of necessary unity.9 Therefore, in conceptualizing a persons legal rights, we must think of a person and her body as one.10 Since my body and my person are always in the same spatiotemporal location, the empirical boundaries of my person are identical with those of my body. We can illustrate the necessary unity of the body and the person by contrasting it to the relation between a person and her private property. Private property is not necessarily united with my person. I may obtain private property through certain actions, and, indeed, if something is mine, then it is mine even if I am not physically holding it. And if someone takes my property a wrong is done, but not to my person. For example, if I forget my scarf at your house one evening, then the scarf is still mine even though I no longer have it with me. If you steal my scarf, you do not wrong my person since you do not touch my body, but you still wrong me by depriving me of my rightful property. In contrast, were you to forcibly grab the scarf from around my neck as I am leaving your house, not only would you wrong me by depriving me of my property, but also you would wrong my person by touching my body in unauthorized ways. From the point of view of justice, then, my embodiment entails that when you violate my bodily integrity, you wrong my person. Because violations against my body are violations against my person, they are more serious than wrongs involving my property. Liberal theories of justice, as well as the principles underwriting liberal constitutional democracies, affirm some version of the view that everyone has an innate right to freedom, meaning that everyone has a right to set and pursue ends of his own insofar as he respects the rights of others to do the same, subject to reciprocal laws of freedom. Moreover, according to the liberal position presented above, the fact of our embodiment entails that our innate right to freedom must involve an innate right to our own bodies—as contrasted with acquired rights to material possessions (private property) we appropriate or make part of our means.11 To be free in this "external" sense—or what Kant calls "external freedom"—involves using oneself (ones embodied person) and ones means (ones rightful possessions) to set and pursue ends of ones own under universal laws of freedom. Thus, when we interact, we are free as long as we are setting and pursuing ends of our own subject only to universal laws of freedom that restrict us reciprocally or in the same way. This, for Kant, is rightful freedom.

158

The Right to Bodily Integrity 38

OUT FROM THE SHADOWS

One way to clarify this liberal conception of freedom is to contrast it, first, with being enslaved and, second, with being deprived of rights. A slave does not have the right to set and pursue ends of his own, since the slave owner literally is seen as c owning" the slave. The slave is seen as a "rightful" possession of the slave owner, namely, as a means with which the slave owner can set and pursue his own ends. The slave is therefore not only deprived of all rights, that is, of any rights to set and pursue ends of his own, but everything the slave does, in principle, is in need of approval from the slave owner. On the Kantian conception of justice, the reason why slave laws are void is that they involve an incoherent notion of rights. Slave laws assume both that some particular persons are mere means for others (things), and so incapable of obligations, and at the same time that they are capable of obligations, and so are not mere means (things). Consequently, such "possessions" and "contracts" can never be rightfully enforced. In contrast to being enslaved, persons who are simply denied rights are not seen as belonging to anyone else, but they too lack the right to set and pursue their own ends. What is common to both cases is the denial of a right to freedom, understood as the right to set and pursue ones own ends independently of the arbitrary choices of another but as subject only to universal laws of freedom that restrict interacting persons reciprocally. Most commonly, the problem with coercive restrictions outlawing homosexual activity and abortion as such is not that they enslave homosexuals and women.12 Rather, the typical problem with criminalizing these activities is that it denies women and homosexuals the right to their own bodies. And since our bodies and persons must be seen as necessarily united, such restrictions are irreconcilable with respect for one another's person, which is the foundation of any liberal notion of rights and duties. Such restrictions involve, in other words, a refusal to interact with women and homosexuals rightfully or as persons. Consequently, a state that enforces such laws fails to set itself up as civil society, since the civil condition just is one in which all persons can interact rightfully.13 Such a state fails to provide conditions under which all its citizens can interact as persons or on terms consistent with each other's innate right to freedom.14 Instead, such a state forces its subjects to interact as they would in a brutal version of the state of nature, where the many or the powerful have no intention of interacting in ways consistent with respect for everyone's right to freedom.15 In fact, some set it as their end to deprive others of this basic right. But if anything is wrong, this is wrong, since it violates the very foundation of a liberal notion of rights and

The Right to Bodily Integrity R I G H T TO BODILY I N T E G R I T Y

159 3 9

duties. Hence, under such conditions, women and homosexuals must protect themselves from the violence perpetrated against them by others—including the state—to the best of their ability. 2.1 Abortion: Rightful Restrictions Before applying the above conception of rightful embodied freedom to the current controversial, proposed legislation to criminalize abortion, let me first illustrate how the above Kantian conception of justice can explain why all liberal constitutional democracies firmly reject certain proposals to deny the right to abortion. As we will see, the reason why these particular proposals are rejected is primarily that they so clearly involve depriving women of their bodily integrity, though one type of proposal involves enslavement. Consider first the enslavement case. Liberal constitutional democracies typically reject laws that subject a woman's decision regarding abortion to some other private persons choice. For example, liberal constitutional democracies do not permit laws according to which the other parent or the parents of the woman are seen as having the right to veto the woman's choice to have an abortion.16 According to the theory presented above, the reason why such restrictions are rejected is that they involve the enslavement of women. They are fundamentally inconsistent with a woman's freedom subject to universal laws, since the woman's freedom in this case is subjected to another private persons arbitrary choice (the other parent or the woman's own parents). A liberal constitutional democracy considers such laws to be fundamentally inconsistent with each citizen's rights—they are necessarily "unconstitutional"—since any liberal notion of right is inconsistent with depriving legally responsible persons of the right to make such decisions regarding themselves. To use Kantian language, such a law is fundamentally inconsistent with each citizen's innate right to freedom, which is why no just state will uphold it. Second, no modern liberal constitutional democracies hold that women and their embryos/fetuses have equal legal status. Importantly, they all hold that the fetus acquires full legal rights only once it is born. Up until the point of birth, the life and health of the mother has priority, and therefore, if carrying the fetus to term presents a health risk to the mother, there is a right to abort. Like Kant, they all agree that the right to freedom is "innate," something a person is born with. It is not something that persons have prior to birth. Why is this so? In accordance with the

160

The Right to Bodily Integrity 40

OUT FROM THE SHADOWS

conception of rightful interaction presented above, the reason is simply that a liberal constitutional democracy requires its laws to be consistent with each citizen's right to freedom. Since we are embodied beings and since women give birth to babies, the only way to protect a woman's embodied freedom—to protect her constitutional rights as a citizen—is by giving her priority over the fetus. That is to say, in an important sense, the mother and the fetus are an analytic unity: they are necessarily united up until birth. But, since the fetus is inside the mother s body, it is united with and dependent on the mother—not the other way around. Therefore, only the mother is an independent, embodied person. The fetus is not an independently existing embodied person until it is born. To treat the fetus otherwise, that is, as an independently existing person prior to birth, is necessarily to deprive the mother of her bodily integrity and therefore of her embodied personhood. It is necessarily to treat the mother merely as a means for the fetus.17 Finally, all liberal modern constitutional democracies argue that no woman can be rightfully coerced to carry forward a pregnancy that is the result offeree (rape). Again, no liberal legal system can permit any of its citizens to violate another citizens bodily integrity and thereby force that other person to pursue a particular end (carry forward a pregnancy). To permit this would be to deprive some of its citizens—women—a right to freedom at all, or to permit the replacement of right with might. These above examples constitute the easy cases for liberal theories, including the Kantian theory, and they do not, in my view, constitute the heart of the current controversies surrounding abortion. Indeed, both liberal positions and reasonable ethical/religious positions arguing against the right of abortion have some way of accommodating the above claims made concerning enslavement, unequal status of mother and fetus until birth, and pregnancies as a result of rape. These kinds of cases do not represent the core of the present controversy, since at least the reasonable participants in current discussions agree that they are exceptions to the general rule.18 Rather, the hard question concerns what the general rule should be: should women have a right to abortion under "normal" circumstances or not? Much of the debate focuses not only on the assumption granted in the arguments above namely, that the fetus is a person, but also on the question of whether the embryo is a person. The reason seems to be that both camps in the debate agree that if we accept that an embryo/fetus is a person—for metaethical or theological reasons—then we must also accept the general rule that abortion in all stages of embryonic/fetal development should be coercively prevented

The Right to Bodily Integrity RIGHT TO BODILY I N T E G R I T Y

161 4 1

and criminalized (again with the exceptions being cases of enslavement, protecting the life or health of the mother, and rape). Consequently, much effort on the part of those in favor of abortion focuses on challenging this assumption with regard to earlier stages of embryonic/fetal development, whereas anti-abortion defenders focus on justifying it. Thus the current debate is mired down in trying, to this point unsuccessfully, to give some sort of conclusive metaethical or theological arguments for why, why not, or at what stage we should consider the embryo/ fetus a person.19 The most important challenge to the assumption that solving the metaethical or theological problem will solve the problem of whether or not abortion should be prohibited comes from Thomson, for she grants that the fetus is a person in all stages of development. She then argues famously—through the example of the violinist who gets kidnapped and hooked up to another person overnight—that it does not follow that abortion can be coercively prevented or criminalized. As is evident by now, I share Thomsons view. Nevertheless, I believe that Thomsons argument succeeds only in justifying the exceptions to the general rule outlined above, namely, the cases of prohibiting one person to have an arbitrary veto power over the pregnant woman, of the pregnant woman's priority over the fetus, and of the right to abort in cases of rape. That is, Thomson establishes why no liberal theory and constitutional democracy will permit these kinds of coercive legislation, and her reasoning seems to be quite similar to the Kantian reasoning presented above. What we are looking for, however, is the possibility of a stronger argument, one that justifies abortion also in the "normal" cases and not only in these exceptional cases.20 That argument, I suggest, must tackle the harder question of whether or not it matters from the point of view of justice that the woman has permitted embryonic/fetal development to reach a certain stage. The stronger justification of a right to abortion will show that even if we grant personhood upon conception for metaethical or theological reasons, this does not entail that as a matter of justice, normal cases of abortion can be coercively prevented or criminalized. Moreover, if we can show why women must choose whether or not to abort before a certain stage of embryonic/fetal development, then we might have an argument convincing to both camps. The hope is that this argument can provide a way out of the current deadlock between pro-choice and antiabortion activists and advocates, by driving home the point that their disagreement is about metaethical or theological positions on personhood and not about considerations of justice. Once this important

162

The Right to Bodily Integrity 42

OUT FROM THE SHADOWS

distinction is brought to light, it will be clear that the argument can satisfy most pro-choice advocates. And although it will challenge the conclusion upheld by the anti-abortionists, it proceeds from the antiabortionists' own metaethical or theological foundation, namely that an embryo/fetus is a person upon conception.21 This third approach to abortion I am suggesting requires accepting the view that an analysis from the point of view of justice or right is not the same or coextensive with an analysis from the points of view of ethics or theology. As such, this is not a terribly upsetting assumption for most. After all, no major religions argue that one can be forced to become religious. One is only a religious person if one has accepted it freely, taken the religion "to heart." Moreover, everyone accepts that much of what might be considered ethically praiseworthy or blameworthy should not be made a matter of law. For example, no one thinks that it should be a matter of justice that one is generous, kind, friendly, or considerate. Rather, what will strike many as controversial, and hence what is important to show, is that the issue of abortion should be seen similarly. Abortion is one of those issues where from the point of view of justice ethical and theological arguments are not, and therefore should not be, considered directly relevant. Consequently, when we individually—as citizens, as politicians, as legislators and as judges—think about whether or not abortion should be criminalized, ethical or theological arguments should not be what settles the issue. Rather, what is important from the point of view of justice is how to make our interactions in the world just or rightful. What we ought to be thinking about when considering abortion rights is how we ensure what Kant calls "rightful interaction." Rightful interaction concerns external freedom. External freedom requires, as we saw above, the human ability consciously to set and pursue ends of ones own in the world, which Kant also calls "choice." External freedom, simply put, is to subject one's choices in the empirical world (of space and time) only to universal laws of freedom. Finally, justice or right is a relation between persons' exercise of external freedom, namely, the relation enabling interaction under laws of freedom that restrict reciprocally. Moreover, it is because external freedom is exercised in space and time that it can be coerced, since to coerce is to hinder the exercise of external freedom—hinder the setting and pursuing of ends in the world (in space and time). Coercion is rightful, in turn, only if it enables interacting persons to exercise their external freedom under universal laws of freedom that restrict reciprocally. In fact, it is precisely because rightful interaction tracks only what is coercible that ethics and

The Right to Bodily Integrity RIGHT TO BODILY I N T E G R I T Y

163 4 3

religiosity are fundamentally beyond the proper grasp of just laws. Being religious, just as being virtuous, fundamentally requires a first-personal involvement and motivation that coercion cannot in principle reach and hence we cannot legislate it.22 It follows that having laws that prescribe virtuous or religiously inspired actions is nonsensical.23 In addition, laws demanding religiosity or virtue are fundamentally inconsistent with setting and pursuing ends of one's own, which is to say that they are inconsistent with an individuals innate right to freedom. The innate right to freedom therefore includes the right to set and pursue immoral ends, such as undertaking stingy or unfriendly actions. How, then, does the above conception of rightful interaction entail that abortion as such cannot be rightfully and coercively prevented or criminalized? It helps to remember that justice, and consequently legal argumentation, is limited to the kind of beings who are capable of external freedom, even if this ability is not fully developed and even if temporarily incapacitated.24 In light of this consideration, it is important that at very early stages of pregnancy the embryonic cells merely divide and multiply. At this stage, there is yet no spatiotemporal being with a capacity for choice developed to protect.25 At this stage there is no human capacity for or ability to act on ones own initiative, that is, engage in what I will call "spontaneous unified action" even in a minimal sense. Therefore, we simply cannot attribute legal rights upon conception even if we, for metaethical or theological reasons, want to attribute personhood. Consequently, legal personhood is limited to beings with a spatiotemporal or empirically detectable capacity for spontaneously unified action, whereas moral/religious personhood may not be so limited. To clarify this point, let me draw an analogy to the legal discussion surrounding legal death. Even though there is significant disagreement exactly when it occurs, most states consider a person legally dead when he or she is "brain dead," meaning that there is no longer any brain activity. So, from the point of view of justice, the crucial consideration is whether or not the person is presumed (by medical experts) permanently to have lost all spatiotemporal capacity (let alone ability) spontaneously to unify action. When this happens, legal guardians have the right to end treatment. The main reason why legal guardians are not required to end treatment at this point, I believe, is to ensure that the legal system is compatible with the brain dead persons deep ethical or religious views.26 Analogously, at early stages of pregnancy, when the unit of cells (the embryo) merely divides, there is no spatiotemporal human capacity or minimal ability to spontaneously unify any kind of action.27 It follows

164

The Right to Bodily Integrity 44

OUT FROM THE SHADOWS

that up until this point it has not acquired any legal rights, and the decision whether or not to abort lies with the mother. In other words, we may grant that from a metaethical or religious point of view, the person already exists, say, as a being only in time or an immaterial being, but justice and the law must be restricted to regulating interaction in space and time, between beings capable of external freedom, which starts with evidence of a capacity spontaneously to unify action. Cells dividing at early stages of embryonic development simply cannot be ascribed such a capacity. Legal rights as such can be conferred only at the point at which the fetus has developed into a unified spatiotemporal being with minimal yet human capacities for external action. This point, therefore, is the normatively important moment from the point of view of justice and the law. Since justice and the law are limited to regulating external freedom, or interaction in space and time, justice and the law must be silent until the human capacity for minimal external action exists. From the point of conception to the point at which the embryo/fetus is able spontaneously to unify action in this minimal sense, the fetus can have no rights and the law cannot coercively restrict abortion. Up until this point, ethical and religious considerations are what must regulate peoples thoughts and actions about the matter. To legislate otherwise is to deprive women of their innate right to freedom in a most radical sense. Having coercive restrictions that require women to carry forward pregnancies before the fetus can acquire legal rights is to treat women as being subject to the law in a different way or for different reasons from anyone else. Hence, women are denied equal protection under the law.28 In addition, requiring women to carry forth pregnancies before the fetus acquires legal rights deprives women of their rights to their own bodies (and thus their own persons) by forcing them to set and pursue particular bodily ends not of their own choosing. Moreover, as in the case of legal death, there seems to be a reasonable disagreement about exactly when the point of embryonic/fetal29 development occurs that confers legal rights. Indeed, there is significant, informed disagreement concerning what constitutes sufficient embryonic/fetal development even within and among states that protect women's right to abortion. For example, some advocate the time of viability, others the moment of "quickening," still others minimal consciousness or certain neurological processes, and so on. The effect of this disagreement is that states that protect women's right to abortion have different laws determining the time after which abortion is no longer legally permissible. Some states permit women to abort only up until the

The Right to Bodily Integrity RIGHT TO BODILY INTEGRITY

165 4 5

eighth week, others later. Still, what is common to all these reasonable suggestions is that they focus on evidence of the development of human cells into what may be deemed a unified, minimally acting human being. Therefore, each suggestion is a reasonable empirical candidate in light of the common normative principle being applied. Furthermore, the disagreement seems not only to be reasonable, but also inevitable, since the question of when the fetus can exercise minimal unified, external action requires a normative judgment, namely, when we should ascribe movements in space and time to a fetus/embryo's spontaneous ability to unify external action. The judgment is normative in that we are ascribing actions to the fetus by saying that it seems reasonable to hold that the movements are actions initiated by the fetus rather than merely determined by cells dividing. Because we are looking for a normative principle to determine the issue, there will be more than one reasonable empirical interpretation of how the principle applies. And though some empirical suggestions are more reasonable than others, it will not be possible to determine one single empirical answer to the question. My suggestion, then, has been twofold. First, all of the aforementioned contemporary proposals for which time is the normatively significant moment from the point of view of justice and the law can be seen as applications of the same normative principle. The principle would state something like, "the moment of embryonic/fetal development at which some legal rights are acquired is the moment that evidences a minimally acting human being." And because there is a problem of reasonable indeterminacy in trying to choose between the many reasonable, yet competing, applications of the normative principle, we find a significant diversity of legal practice in liberal constitutional states that recognize women's right to abortion. Second, because this diversity arises as a result of a reasonable disagreement regarding the correct application of a normative principle, only the state—and not individuals—can have the right to enforce any specific restrictions on abortion. That is to say, since many of the choices are equally reasonable, for any particular private party to make the determination is merely for that party arbitrarily to impose her choice on others.30 This would result in one person being seen as having the right to subject another persons body and person to her arbitrary choices, which is inconsistent with due respect for that persons right to freedom. Since there is reasonable disagreement as to what constitutes the appropriate evidence of sufficient embryonic/fetal development, there can be rightful enforcement of one restriction over another only if the restriction is determined, applied,

166

The Right to Bodily Integrity 46

OUT FROM THE SHADOWS

and enforced by a public authority. Only a public authority can be seen as representing everyone and yet no one in particular, and thus only it can issue a restriction that can be deemed impartial in principle. Therefore, only a state can impose abortion restrictions on women, namely, that they can terminate their pregnancies only before a particular stage of gestation. The reason is that due to the indeterminacy in applying the normative principle, only the state can rightfully determine the time at which the embryo/fetus acquires some legal rights. Moreover, once the baby is born and hence is no longer physically dependent on the mother s body, it has full legal rights, including the right that both parents take care of it.31 The baby has not consented to being born, but is the result of the parents' actions and hence it is reasonable to claim that they are responsible for the baby. The parents must act on behalf of the child and teach the child, insofar as possible, what is needed for the child to become capable of choice, external freedom and rightful interaction.32 The position presented here gives a strong defense for abortion, but only before the embryo/fetus has reached a certain legally significant point—a point in time at which it acquires some legal rights due to having developed a capability or ability to act externally (minimally understood). And this point in time must be determined by the state.33 Therefore, up until the point at which the fetus acquires legal rights, the choice whether or not to keep the embryo/fetus lies with the pregnant woman, and if she chooses to let the fetus develop beyond this point, she must also accept that the fetus has acquired legal rights to her. Finally, it is worth pointing out that the state cannot enforce such abortion laws if it does not also make sure that those in need, whether adolescent or adults, actually have access to the resources required for abortions. It is reasonable to argue, first, that adolescents must be guaranteed information and financial help in order to make sure that they are not subjected to their parents' lack of ability or unwillingness to pay for abortions, since this would be to allow the parents to enslave their children in the sense I have described. Second, poor persons' rights to abortion must also be guaranteed by a state that enforces abortion laws. Such guarantees are necessary to ensure that poor persons have opportunities to have abortions independent of being subjected to other private person's arbitrary choices to provide them with the required means (as perhaps through charitable donations). After all, women cannot make a choice to abort without the required means. Hence, if a state imposes and enforces a deadline on abortions, as on this account it should, it must also institutionally guarantee access to the means, say, through welfare measures, that make either choice possible. If the state

The Right to Bodily Integrity RIGHT TO BODILY I N T E G R I T Y

167 4 7

were to uphold a monopoly on coercion and a legal system in which women have neither the appropriate knowledge nor the requisite actual access to services to exercise their freedom, it would fail to provide them with civil society. Instead, it would force some of its citizens to be subject to the arbitrary choices of others, namely, their private choices to provide education or charity. The state must set up its monopoly on coercion such that it is reconcilable with each persons innate right to freedom, which requires systemic institutional guarantees against being trapped in such private dependency relations. If it does not provide such institutional guarantees, it cannot justly enforce abortion laws. 2.2 Homosexual Activities: Rightful Restrictions Somewhat surprisingly, perhaps, attempts to justify coercive restrictions on homosexual interactions, including criminalization, encounter similar kinds of problems faced by those attempting coercively to restrict abortion as such. Nevertheless, it should no longer be surprising. Because we are embodied beings, a persons innate right to freedom gives each person a right to bodily integrity. Restrictions on homosexual activity, like restrictions on abortion as such, fail to respect an individual's right to bodily integrity. The main difference between the two cases is that the argument against coercively restricting homosexual activity is simpler and more straightforward, since homosexual interactions involve consensual actions between two legally responsible embodied persons. In short, coercively preventing, including criminalizing, homosexual interaction involves denying homosexual persons sole control over their own bodies and thus also their persons. Instead, it permits homophobic persons the right to determine how other persons should use their own bodies, which is to deny interaction in a way consistent with an individual's innate right to freedom. Therefore, legal restrictions on homosexual activity aim at the annihilation of rights as such. Moreover, a state that enforces such restrictions fails to institute civil society. A *W. at!85. 35 Ibid, at 187. 36 Ibid, at 191. 37 Ibid. 34

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

189

1103

Disciplinary power ... is exercised through its invisibility; at the same time it imposes on those whom it subjects a principle of compulsory visibility. In discipline, it is the subjects who have to be seen. Their visibility assures the hold of the power that is exercised over them. It is the fact of being constantly seen, that maintains the disciplined individual in his subjection.38

Disciplinary control over bodies finds its ultimate expression in what Foucault sees as the emergence of the disciplinary society, marked by an "increasingly medicalized discourse with health, well-being, clinical supervision, and surgical intervention [becoming] ever more crucial to legal, juridical, and political domains."39 His argument, is that power in its juridical form, that is, a form based on the distribution of rights and penalties through centralized state instrumentalities, has largely given way to a new form of power. This change has been brought about by the growth of new knowledges (medicine, psychiatry, criminology, pedagogy, epidemiology) which have "create[d] new fields of exploration and bring within them new modes of surveillance and regulation of the population."40 To return to A.R., it was not the state that compelled his castration. Accordingly, it is not plausible to analyze this case in terms of any simple equation between state power and the repression of sexual potentiality. As we know, it was Ms. Crockett, together with a group of medical professionals, who implemented the decision to use castration as a means of pacifying A.R. and rendering him infertile. This measure may, however, be rendered sensible in a context within which A.R.'s sexuality is understood as threatening and in need of containment, and the surgical means of achieving this result, framed as humane. Those commentators who supported the decision expressed their justifications for castration by reference to larger discourses about appropriate sexual expression and responsible reproduction. A.R.'s mother explained that as he entered his teens he became sexually aggressive. She saw castration as a way of curbing that aggression. She also explained the personal benefits that he enjoys as a result: Most of his caregivers are female and around his age. He goes now to places where he's alone with them. He couldn't do that before, because we couldn't trust he wouldn't have aggressive sexual behaviours.41

The is struck a chord with at least one commentator who remarked: Advocates for the disabled argue that what happened to this man/boy was a violation of human rights. But doesn't this man also have a right to be protected from being a parent? Or from being ridiculed? Or perhaps going to jail?42

38

7M at 187. Elizabeth Grosz, Space, Time, and Perversion: Essays on the Politics of Bodies (New York: Routledge, 1995) at 35. 40 Smart, Feminism and Law, supra note 31 at 7. 41 Mitchell Gray, "Mother Defends Sterilizing Her Son" Calgary Herald (13 May 2002) A9. 42 W. Gifford-Jones, "The Doctor Game: Sterilization Is Not Always Inhumane" Windsor Star (10 October 2002) B5. 39

190

The Right to Bodily Integrity

1104

McGiLL LAW JOURNAL/REVUE DE DROITDE McGm

[Vol. 49

This commentator is expressing the idea that castration offered a beneficent means of protecting the man/boy from the likely consequences of his problematic sexuality (being incarcerated for his sexual urges and becoming a parent). Whether or not these outcomes would have eventuated cannot be known. It is, however, clear that, within this framework, these outcomes were enough to justify radically altering A.R.'s body. The same commentator continued: Today, everyone talks about the need for responsible sex. But how can a 25year-old man with the mental age of four who has sexual desires know the true meaning of sex or the responsibility that goes with it?43

A fertile man engaging in sexual activity implies parenthood and, therefore, reproductive responsibility. A.R.'s sexual urges were, by contrast, uncivilized, and he was innocent of this "true meaning of sex". The significance of this notion of reproductive responsibility becomes even more apparent when this commentator asked "how could any reasonable person believe he could be a responsible parent? ... And who among us would elect to have him as a parent?"44 These questions imply a norm, that is to say, they imply that there is some general understanding about the sort of person who will make an adequate parent. And since A.R. was not a person who could or would ever engage in reproductive sex responsibility, he was not such a person. This "truth" not only provides the justification for sterilization, it also has the effect of framing sterilization as a beneficent measure. These commentaries provide some insight into the way in which norms concerning sexuality were central to the case in favour of castrating A.R. D. The Discursive Production of Sexed Bodies Foucault was interested in how "particular kinds of subject (the mad, the ill, the criminal, the sexual pervert, for example) were produced as effects of discursive and power relations."45 His ideas about power and the body have been a fertile source of critical and feminist legal theorizing.46 Perhaps the most significant contribution made by these theorists has been to reject the claim that there is a natural body, which is overlain with cultural meanings. Lacey explains that "law plays an active role in

43 44 45

Ibid Ibid

McHoul & Grace, supra note 20 at 91. See Judith Butler, Bodies That Matter: On the Discursive Limits of "Sex" (London: Routledge, 1993); Rosalyn Diprose, The Bodies of Women: Ethics, Embodiment, and Sexual Difference (London: Routledge, 1994); Elizabeth Grosz, Volatile Bodies: Toward a Corporeal Feminism (Bloomington: Indiana University Press, 1994); Anthony Synott, The Body Social: Symbolism, Self and Society (London: Routledge, 1993); Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (New York: Oxford University Press, 1985); Margrit Shildrick, Leaky Bodies and Boundaries: Feminism, Postmodernism and (Bio) Ethics (London: Routledge, 1997); Brian S. Turner, The Body & Society: Explorations in Social Theory, 2d ed. (London: Sage, 1996). 46

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

191

1105

producing its subjects as sexual beings."47 It does this both by constructing certain sexualities, practices, and identitites as having particular social meaning48 and by constituting "the actual shapes, powers, and capacities of human bodies, in their sexual and other spheres of being."49 The argument here is that discourses, including legal discourses, construct bodies each time they assign certain "qualities to the body, seeing the body in terms of some things and not others, seeing some bodies in certain ways and other bodies in others."50 A further implication of this analysis is that bodies are not always constructed, symbolically or literally, in the same way. Hyde argues that law has no coherent conception of the body. The body has been analogized to a machine, a zone of privacy, as property, and as a right to bodily integrity. He argues that an "assortment of representations and vizualizations"51 are deployed "to solve political problems internal to legal discourse."52 In other words, legal discourses are replete with symbolic representations of the body, and these representations can be central to legal outcomes. With echoes of Mary Douglas' theorizing of the body, Hyde claims that law's traditional liberal conception of the body is "an individuated entity with distinct boundaries, an outside and an inside."53 Within the framework of liberalism, "[d]efining those boundaries is an individuated judgment that calls for no consideration of other legal subjects."54 The frequently cited origin of the common law principle of bodily integrity is William Blackstone. Blackstone conceptualized the body as sacred and this conception formed the basis of the claim that no one has "a right to meddle with"55 another's body "in any the slightest manner."56 Although the term "sacred" is no longer used in modern jurisprudence, more recent formulations of the principle of bodily integrity have retained the essence of Blackstone's claim, characterizing the body as "inviolate", that is, not to be violated or dishonoured. In Collins v. Wilcock, the English Court of Appeal articulated the nature and breadth of this principle:

47

Nicola Lacey, "On the Subject of 'Sexing' the Subject..." in Ngaire Naffine & Rosemary J. Owens, eds., Sexing the Subject of Law (Sydney: Law Book Company, 1997) 65 at 67. "Ibid 49 Lacey warns that "law's contribution to the production of sexed legal categories" must be understood as continuing process and therefore contingent. She also urges feminists engaged in the sexing project to assume the "intellectual responsibility" of thinking beyond the particular history of law's sexing in order to "re-imagine legal categories ... in less hierarchical and more heterogeneous terms" (ibid at 68). 50 Ngaire Naffine, "The Body Bag" in Naffine & Owens, supra note 47,79 at 84. 51 Alan Hyde, Bodies of Law (Princeton: Princeton University Press, 1997) at 84. 52 53

Ibid.

Ibid at 258. 54 Ibid at 258-59. 55 William Blackstone, Commentaries on the Laws of England: A Facsimile of the First Edition of 1765-1769, vol. 3 (Chicago: University of Chicago Press, 1979) at 120. 56

Ibid

192

The Right to Bodily Integrity

1106

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

The fundamental principle, plain and incontestable, is that every person's body is inviolate. It has long been established that any touching of another person, however slight, may amount to battery.... The breadth of the principle reflects the fundamental nature of the interest so protected.57

Indeed, the principle of bodily integrity is so fundamental that even socially desirable activities, such as the provision of medical treatment, are not excluded from its scope: "Any treatment given by a doctor to a patient which is invasive (i.e. involves any interference with the physical integrity of the patient) is unlawful unless done with the consent of the patient: It constitutes the crime of battery and the tort of trespass to the person."58 "Trespass" is a term that is commonly used to describe the unlawful transgression of privately owned land and it vividly evokes the idea of a body that is marked off by distinct physical boundaries. In this sense, the principle of bodily integrity posits a normative physical body that occupies a bounded space. Furthermore, as Douglas observed, the boundary metaphor also speaks to broader notions of order and disorder. The purpose of a boundary is to contain and delineate and, in so doing, simulate a sense of order. When boundaries are breached or threatened, so too is the sense of order they denote. Within this framework, unwanted bodily intrusions disrupt order and thus warrant legal prohibition. At this level of abstraction, these claims about the principle of bodily integrity are unlikely to provoke radical disagreement. It is by no means clear, however, that the model of the bounded, physical body will always provide an adequate model for describing human experience or, for that matter, law's attitude to the integrity of particular bodies. It is not surprising therefore that, in addition to the bounded inviolable body, Hyde finds evidence of alternative, less inviolable bodies: The legal subject must, however, tolerate or consent to some fairly massive social uses of the body, which law facilitates by constructing that body so as to permit such social use. ... While all these represent permissible social uses or invasions of the body, law facilitates these by constructing various discursive bodies, sometimes defined as interests in liberty or property, sometimes as things or property, sometimes through euphemistic language that makes the body disappear.59

Sexual connection and pregnancy are two spheres of human experience in which, arguably, the symbol of the bounded body does not offer an adequate model. Haraway contends that pregnancy places women in a "more shocking relation than men to doctrines of unencumbered property in the self."60 This is because: In "making babies," female bodies violate western women's liberal singularity during their lifetimes and compromise their claims to full citizenship ... 57

[1984] 1 W.L.R. 1172 at 1177, [1984] 3 All E.R. 374 (Q.B.). Airedale N.KS. Trust v. Bland, [1993] 1 All E.R. 821 at 881-82, [1993] AC. 789 (H.L.) [Bland cited to All E.RJ. 59 Hyde, supra note 51 at 259. 60 Donna Jeanne Haraway, Primate Visions: Gender, Race, and Nature in the World of Modern Science (New York: Routledge, 1989) at 353. 58

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

193

1107

Ontologically always potentially pregnant, women are both more limited in themselves, with a body that betrays their individuality...61

Haraway's analysis implies a comparison between the maternal body and an abstract ontological understanding or personhood which, like law's principle of bodily integrity, fixes upon a distinct, individuated body. In this comparison, women are never really able to meet the requirements of the normative physical body and are politically compromised as a result. Indeed, it is suggestive of the power of the normative "inviolate body" that Haraway describes the maternal body as an entity that "violates" liberal singularity. Naffine applies a similar analysis to the law of assault. She argues that because law's principal concern "is (the policing of the boundaries of) the bounded heterosexual male body. Bodies that are not like this, or are not allowed to be like this, are somehow deviant and undeserving bodies. They are 'unnatural', even 'loathsome' because they have apparently lost their clear definition."62 Naffine claims that "the criminal law of human contact presupposes ... a standard, uniform, bounded human body which is really an extrapolation from a certain liberal conception of the male body, not a woman's body."63 Thus, the body implied by the principle of bodily integrity, is not only a bounded body, it is a masculine body. This raises the question of what the unbounded body represents. Smart contends that "[w]omen's bodies have given rise to a 'problem of order.'" She argues that "women's bodies are constituted as the archetypal site of irrationality"64 because the female body has historically been constructed as failing "the test of subordinating desire to reason."65 This idea can be reformulated in light of Naffine's framework to argue that female bodies pose the "problem of order" because they have not been perceived as "bounded" in an equivalent manner to men's bodies. In this sense, menstruation and pregnancy might be regarded as a failure on the part of women to keep their bodies separate and hidden. This might also explain why women's bodies tend to be regarded as open, pierced, or otherwise incomplete66 and thus produced in law as "non-standard or aberrant (not-male) bodies."67

61 62

Ibid

Ibid at 84. 63 Supra note 50 at 86. She goes on to say: "Inevitably, this is very much a matter of construction, not a literal reading of the body, for, to my mind, the body does not possess a nature which can simply be read off" (ibid). 64 Carol Smart, Law, Crime & Sexuality: Essays in Feminism (London: Sage, 1995) at 227. 65 Ibid 66 Naffine, supra note 50 at 88. 67 Ibid.

194

The Right to Bodily Integrity

1108

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

E. Medical Categorizations and Welfare-Oriented Practices The notion that the inviolable or sacred body functions as an ideal against which real bodies are compared offers further clarification of the manner in which legal discourses construct bodies. But law does not necessarily operate autonomously in these processes of examination, classification, and comparison. Non-juridical discourses also have a role to play both in identifying bodies as deviant or problematic in some way and in providing authoritative solutions to the dilemmas these bodies pose. It is here that the tensions and connections between juridical and disciplinary power are most obvious. Although Foucault arrives at a different understanding about the manner in which power operates in modern society than that envisaged by liberal conceptions of power, he concedes that juridical power still appears to have force. He speculates that the apparent tenacity of juridical power might be explained by the fact that the two forms of power are intertwined.68 The result, according to Foucault, is that "power is exercised simultaneously" through the discourses of right and the discourses and techniques of normalization "to which the disciplines g[a]ve rise".69 However, he sees disciplinary power "invadpng] the area of right so that the procedures of normalisation come to be ever more constantly engaged in the colonisation of those of law."70 He specifically uses "the extension of medicine"71 to illustrate this point: It is precisely in the extension of medicine that we see, in some sense, not so much the linking as the perpetual exchange or encounter of mechanisms of discipline with the principle of right The developments of medicine, the general medicalisation of behaviours, conducts, discourses, desires, etc., take place at the intersection between the two heterogenous levels of sovereignty and discipline.72

It is thus possible to incorporate Foucault's conception of power operating through discourses of normalization, without ignoring the operations of traditional forms of juridical power. Smart contends that discourses of rights and discourses of normalization constitute two parallel systems of power that merge in the context of law's relationship to the body: Through the appropriation of medical categorizations and welfare-oriented practices, rather than judicial practices, law itself becomes part of a method of regulation and surveillance. Law, therefore, has recourse to both methods, namely control through the allocation of rights and penalties, and regulation

68 For a discussion of the relationship between medical power and law in the context of medical killing, see Kristin Savell, "Human Rights in the Age of Technology: Can Law Reign in the Medical Juggernaut?" (2001) 23 Sydney L. Rev. 423. 69 Foucault, Power/Knowledge, supra note 19 at 107. 70 Ibid 71 Ibid

72

Ibid

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

195

1109

through the incorporation of medicine, psychiatry, social work and other professional discourses of the modern episteme.73

The law, therefore, can be seen as "stand[ing] in a symbiotic relationship to other forms of disciplinary power relations."74 Foucault's suggestion that juridical and medical forms of power are intertwined provides a surprisingly useful staring point for a consideration of the common law concerning compulsory sterilization in England and Canada. The specific points of connection and departure between these bodies of law will be discussed in some detail in Part III. On the broader question of how medical and juridical forms of power operate within these discourses, however, it is desirable to make some general observations at this stage. In Canada, the parens patriae jurisdiction empowers courts to make decisions in the best interests of an incapacitated adult.75 On one analysis, the very existence of a "welfare jurisdiction" is illustrative of an exchange between juridical and disciplinary power. In this field, there is a mingling of concerns about individual rights and notions of welfare. This mingling, however, does not always lead to predictable results. Thus, in Re Eve, where the question of whether compulsory sterilization could be justified on welfare grounds arose for determination, the Court of Appeal of Prince Edward Island and the Supreme Court of Canada reached opposing conclusions on the matter.76 A striking difference between the approaches taken by each court concerned the weight to be accorded to the physical integrity of the body. The Supreme Court of Canada was extremely resistant to arguments that sought to diminish Eve's legal right to physical integrity on the basis of speculative judgments about the medical and social benefits of sterilization. In particular, the Supreme Court appeared to have been greatly influenced by historical abuses of sterilization and the normalizing judgments that supported them. Accordingly, the Supreme Court of Canada rejected welfarist discourses that declared Eve to be better off sterilized, in favour of a rights-based approach that prohibited non-consensual surgical sterilization as an infringement of Eve's bodily integrity. In Foucauldian terms, this might be regarded as a triumph of the discourses of right over the discourses of normalization. Further evidence of the unpredictability of the confrontation between juridical and medical power can be found in the approach taken by English courts, which have reached substantively different conclusions on the question of whether the practice of non-therapeutic sterilization can be justified in terms of "best interests". In contrast to Canada, there is no parens patriae jurisdiction over incapacitated adults in English

73

Smart, Feminism and Law, supra note 31 at 96. Annie Bunting, "Feminism, Foucault and Law as Power/Knowledge" (1992) 30 Alta. L. Rev. 829 at 837-38. 75 K (Mrs.) v. Eve, [1986] 2 S.C.R. 388,31 D.L.R. (4th) 1 [Re Eve cited to S.C.RJ. 76 Ibid. See Part HI ("Sex, Integrity, and the Individual Body") for a full discussion of these decisions. 74

196

The Right to Bodily Integrity

1110

McGiLL LAW JOURNAL/REVUE DE DROITDE McGm

[Vol. 49

law. This jurisdiction was abolished by the Mental Health Act, 1959.71 In Re E (Mental Patient: Sterilisation)™ the House of Lords was confronted with the question of whether and, if so, how to legitimate the non-consensual medical treatment of incapacitated adults in the vacuum created by the abolition of the parens patriae jurisdiction. This case involved an application for a declaration from the court that it would be lawful to sterilize R, a learning disabled adult woman.79 Lord Bridge noted "[a] paucity of clearly defined principles in the common law,"80 which could be applied to the question before the court.81 But he thought it "axiomatic that treatment which is necessary to preserve the life, health or well being of the patient may lawfully be given without consent."82 Lord Brandon noted that the "common law would be seriously defective if it failed to provide a solution to the problem ... [otherwise [incapacitated patients] would be deprived of medical care which they need and to which they are entitled."83 Lord Jauncey was also compelled by the potential injustice of depriving incapacitated patients of medical treatment. He cautioned against "erecting ... legal barriers against the provision of medical treatment for incompetents"84 lest they be "deprived of treatment which competent persons could reasonably expect to receive in similar circumstances. The law must not convert incompetents into second class citizens."85 In a manner consistent with this concern that the medical and nursing needs of incapacitated patients should not be unduly constrained, it was decided that "a doctor can lawfully operate on, or give other treatment to, adult patients who are incapable ... provided that the operation or other treatment concerned is in the best interests of such patients."86 This still leaves unanswered the question of what constitutes "best interests" and, more importantly, who will decide this question. Lord Brandon thought that treatment is in a patient's best interests "if, but only if, it is carried out in order either to save their lives, or to ensure improvement or prevent deterioration in their physical or mental health."87 Thus, if the medical treatment is in the best interests of the patient, it is lawful, with the result that the consent of the court is not necessary. This, as Lord Brandon pointed out, was "just as well" otherwise "the whole process of medical care for such 77

(U.K.),7&8Eliz.n,c.72. [1990]2A.C. l(R.L.)[ReE].

78 79

In the case of a minor, an English court has power to order a sterilization in the exercise of its

wardship jurisdiction: Re B. (a Minor) (Wardship: Sterilisation) (1987), [1988] 1 A.C. 199, [1987] 2

All E.R. 206 (H.L.) [Re B. (H.L.) cited to A.C.]. 80

Re E, supra note 78 at 51. "Ibid *2 Ibid at 52. ™Ibid. at 55. *4 Ibid at 83. *5Ibid 86 Ibid at 55. 97 Ibid

The Right to Bodily Integrity 2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

197 1111

patients would grind to a halt."88 There was, however, disagreement about whether there might be special situations, sterilization being one of them, where the court's consent should be obtained. Lord Griffiths thought that leaving the sterilization decision to doctors, acting in the best interests of their patients, was not adequate to safeguard the rights of the patient: I cannot agree that it is satisfactory to leave this grave decision with all its social implications in the hand of those having the care of the patient with only the expectation that they will have the wisdom to obtain a declaration of lawfulness before the operation is performed. In my view the law ought to be that they must obtain the approval of the court before they sterilise a woman incapable of giving consent and that it is unlawful to sterilise without that consent89 Lord Griffiths was aware that in order to achieve this result a new common law rule would need to be developed. He thought that the public interest could justify such a rule. The other members of the court thought it impossible to extend the common law in this manner90 and rejected the proposal. They did, however, agree that, even though it was not required as a matter of law, it was desirable as a matter of good practice that a court declaration be sought prior to the performance of a sterilization operation. Lord Brandon enumerated some of the reasons for this decision including the risk that the operation could be carried out for "improper reasons or with improper motives"91 and the need to protect the doctors involved "from subsequent adverse criticisms or claims."92 The role of the court in such an application is to satisfy itself that the proposed treatment is in the best interests of the patient. Lord Brandon thought that the best interests of the patient should be determined by reference to the professional standard (known in English law as the Bolam standard),93 which is to say, the treatment must

88

7M at 56. Ibid, at 70. 90 Ibid, at 63, Brandon LJ. 91 Ibid, at 56. 92 Ibid 93 The professional standard was elaborated in Bolam v. Friern Hospital Management Committee, [1957] 1 W.L.R. 582, [1957] 2 All E.K 118 (Q.B.) [Bolam cited to W.L.RJ. The plaintiff in Bolam was a voluntary psychiatric patient whose doctor had recommended electro-convulsive therapy ("ECT"). During the course of that treatment, the patient sustained fractures. He alleged that the doctor was negligent in failing to provide an adequate form of restraint and/or administer muscle relaxant drugs prior to the ECT. In addition, he alleged that the doctor was negligent in failing to disclose the risks involved in the treatment In his direction to the jury, McNair J. stated that the test that they were required to apply in order to determine whether the doctor's practice had been negligent was "the standard of the ordinary skilled man exercising and professing to have that special skill... it is sufficient if he exercises the ordinary skill of an ordinary competent man exercising that particular art" (ibid at 586). In other words, a doctor was not negligent "if he had acted in accordance with a practice accepted as proper by a responsible body of medical men skilled in that particular art" (ibid at 587). 89

198

The Right to Bodily Integrity

1112

McGiLL LAW JOURNAL/REVUE DE DROITDE McGm

[Vol. 49

be in accordance with a practice accepted as proper by a responsible body of medical opinion. Tf a more stringent test was applied, he reasoned, the result would be that some incapacitated adults would be deprived of the benefit of medical treatment that competent patients could enjoy.94 More recently, the Court of Appeal has sought to re-assert judicial authority over the determination of best interests. In Re M.B., the Court of Appeal held that "best interests are not limited to best medical interests"95 and in Re A. (Medical TreatmentMale Sterilisation),96 Butler-Sloss P. added that "best interests encompasses medical, emotional and all other welfare issues."97 Furthermore, in Re A, Butler-Sloss P. made it clear that "in the case of an application for approval of a sterilisation operation, it is the judge, not the doctor, who makes the decision that it is in the best interests of the patient that the operation be performed."98 Thus, in Re S.L (Adult Patient)(Medical Treatment),99 the Court of Appeal held that where there were two responsible bodies of medical opinion, each supporting different remedial treatment for excessive menstruation, it was for the court (rather than the patient's mother in consultation with doctors) to decide which of the two treatments was in the patient's best interests. Thus, within English law, the confrontation between juridical and medical power appears to have produced a dynamic field. But, despite the Court of Appeal's concern to assert greater authority over the determination of best interests, it is nonetheless clear that English courts have been comparatively deferential to medical testimony concerning the risks associated with pregnancy, the extent to which labour would deviate from the norm, and the benefits accruing to certain learning disabled women as a result of sterilization. Accordingly, English courts have been considerably more willing to perceive sterilization as a welfarist intervention.100 II. Sex, Bodily Integrity, and the Body Politic The connections between legal and medical discourses concerning the body have deep roots. In the context of non-consensual sterilization, it is possible to show how eugenic theory inspired law reform agendas in both England and parts of Canada. The relationship between the sexuality of certain individuals and the health of the social body was a primary concern for the reformers of the 1920s and 1930s who agitated, with success in Alberta and British Columbia, for the legalization of eugenic sterilization. Similar arguments circulated in Britain and these animated the

94 95

96

Supra note 78 at 68. Re M.B. (Medical Treatment), [1997] 2 F.L.R. 426 at 439 (CA.) [Re M.B.].

(1999), [2000] 1 F.L.R. 549, [2000] 1 EC.R. 193 (C.A.) [Re A. cited to RL.RJ. Ibid at 556. The question is whether this expansion might lead to the recognition of third party interests. The President and Thorpe L.J. each left this question open (ibid at 556,558). 9S Ibid at 556. 99 Re S.L (adultpatient) (medical treatment), [2000] 3 W.L.R. 1288, [2000] 2 RC.R. 452 (C.A.). 100 These matters are discussed in some detail in Part HI. 97

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

199

1113

recommendations of the 1934 Departmental Committee on Sterilisation ("Brock Committee" or "Committee"),101 although eugenic law reforms were never ultimately adopted in England. A. The Menacing Presence of Delinquent Bodies Eugenic theory became popular in the early twentieth century and was concerned with reducing the number of people in society with hereditary deleterious characteristics for the purpose of improving the "race".102 At the time that eugenic sterilization enjoyed widespread support, it was described as "a purposeful attempt, consciously made by a group of the species man, to direct, in some small degree, their own evolution."103 This theory became the inspiration for legislative reform in a range of jurisdictions including Alberta and British Columbia and, most notoriously,104 Germany.105 In Sweden, a racial hygiene program instituted in 1935 and not dismantled until 1976, saw 63,000 Swedes (mainly women) sterilized without their consent.106 In the United States, many states enacted eugenic sterilization legislation,107 and these statutes even survived constitutional challenge. In Buck v. 101

U.K., "Report of the Departmental Committee on Sterilization", Cmd 4485 in Sessional Papers, vol. 15 (1933-34) 611 (President: Brock) [BrockReport}. 102 The Canadian Oxford Dictionary (1998) defines "eugenics" as "the science of improving the ... population by the controlled breeding for desirable inherited characteristics". 103 Harry H. Laughlin, Eugenical Sterilization, 1926: Historical, Legal and Statistical Review in the United States (New Haven, Conn.: American Eugenics Society, 1926) at 1. 104 It is estimated that within the first year of the enactment of the Third Reich's Law to Prevent Offspring with Hereditary Diseases ((14 July 1993) Reichsgesetzblatt ("Reich Law Gazette") 1933,1., No. 86, Berlin: 25 July 1933, 529, trans, online: ) 56,244 people were compulsorily sterilized. Although there are no official records for the total number of people sterilized before the law was repealed in 1945, the estimates range from 200,000 to 2 million. See Natasha Cica, "Sterilising the Intellectually Disabled: The Approach of the High Court of Australia in Department of Health v. J. W.B. and SMB." (1993) 1 Med. L. Rev. 186 at 225. 105 Law to Prevent Offspring with Hereditary Diseases (ibid.) provided that a person could be sterilized if medical opinion considered it probable that his or her offspring would suffer from serious heritable physical or mental defects. A person was considered to be hereditarily diseased within the meaning of the law if they suffered from congenital feeble-mindedness, schizophrenia, manicdepression, congenital epilepsy, Huntington's chorea, hereditary blindness or deafness, or a serious hereditary physical abnormality (ibid, art. 1(2)). In addition to these categories, a person suffering from chronic alcoholism was also subject to the law (art. 1(3)). Article 6 established the Hereditary Health Court, which was responsible for determining sterilization applications, and was constituted by a lower court judge and two doctors (online: document Archiv® de ). 106 See Stephen Bates, "Sweden Pays for Grim Past" The Guardian (6 March 1999), online: Guardian Unlimited ; Julian Isherwood, "Sweden Damages Hope for the 'Race Purity' Victims" The Daily Telegraph (26 August 1997), online: The Telegraph Group . 107 By 1 January 1934, 27 states had enacted eugenic sterilization laws pursuant to which 9,067 women and 6,999 men had been sterilized. See Brock Report, supra note 101, Appendix VIE. For a review of the legislative regimes current at 1926 and statistics recording the numbers of men and

200

The Right to Bodily Integrity 1114

McGILL LAW JOURNAL/REVUE DEDROiTDEMcG ILL

[Vol. 49

Bell, an unsuccessful Supreme Court challenge to the constitutionality of Virginia's sterilization law, Justice Oliver Wendell Holmes infamously said: It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes.... Three generations of imbeciles are enough.108 Glanville Williams, a British proponent of eugenic sterilization, noted that the "obvious social importance" of preventing the births of children who are affected by congenital diseases "has naturally given rise to the proposal to use sterilisation of the unfit as a means of racial improvement."109 To this, he added that "[w]hether or not a genetic decline has set in, the fact remains that the community is burdened with an enormous number of unfit members, and that every humane person must concur with the eugenist in wishing to see an improvement."110 As these passages show, the vocabulary of eugenics spoke to a profound concern with the health of the social body. The groups targeted as mental defectives or subnormals, to use the language of the day, were constructed as unhealthy bodies that posed a threat to social order and the continuing health of the social body. As such, society needed to consider what measures might be taken to prevent further deterioration of its health and, as Glanville Williams contends, perhaps even effect some kind of overall improvement. Alberta and British Columbia enacted sexual sterilisation statutes in 1928 and 1933 respectively.111 Under these statutes, a board was established for the purpose of authorizing the surgical sterilization of inmates of psychiatric institutions. The board could authorize the sterilization of an inmate in circumstances where it was satisfied that "the patient might safely be discharged if the danger of procreation with its attendant risk of multiplication of the evil of transmission of the disability to progeny were eliminated ... "112 In Alberta, the board constituted under the act was called the women sterilized to that point, see Laughlin, supra note 103. For a slightly more critical assessment of the principal arguments for eugenical sterilizations, a review of the scientific literature, and the recommendations of the Committee of the American Neurological Association for the Investigation of Eugenical Sterilization, see American Neurological Association Committee for the Investigation of Eugenical Sterilization, Eugenical Sterilization: A Reorientation of the Problem (New York: MacMillan, 1936). 108 274 U.S. 200 at 207 (1927), 47 S. Ct. 584. According to Robert Lee and Derek Morgan, the principle elaborated in Buck v. Bell was being applied well into the 1970s. See Robert Lee & Derek Morgan, "Sterilisation and Mental Handicap: Sapping the Strength of the State?" (1988) 15 J. L. & Soc'y229at244,n. 10. 109 Glanville Llewelyn Williams, The Sanctity of Life and the Criminal Law (New York: Knopf, 1957) at 80. 110 Ibid at SI. 111 The Sexual Sterilization Act, S.A. 1928, c. 37 [Sexual Sterilization Act (Alta.)]; Sexual Sterilization Act, S.B.C. 1933, c. 59. 112 Sexual Sterilization Act (Alta.), ibid., s. 5.

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

201

1115

Board of Examiners, and it comprised four members, two of whom were medical practitioners. Tn British Columbia, the board was called the Board of Eugenics, and it comprised three members, a Judge of the Court of Record, a psychiatrist, and a person experienced in social work. Under both statutes, the written consent of the person to be sterilized was required. If, however, the relevant board found that that person was incapable of consenting, the consent of the spouse if married, parent or guardian, or the Minister for Health (in Alberta)113 or provincial Secretary (in British Columbia) would suffice. There is evidence to support the contention that, in Alberta at least, concerns about the health of the social body were compounded by racial antipathy and a preoccupation with crime and delinquency: Like all eugenicists, the proponents of the Act considered their ultimate goal to be the improvement of the overall gene pool—the betterment of the human race, by reducing or eliminating procreation by individuals with undesirable, hereditary characteristics, primarily mental illness and deficiency. Important though this objective was to eugenists, their more immediate goal in advocating and ultimately securing passage of the Act was to address what was perceived to be a serious and growing problem of public order and public health—namely the problem of the feebleminded as a menace to society, as a source of rampant crime and moral delinquency. The perception was rooted in the belief that criminality was either hereditary or closely linked to mental deficiency, that mental deficiency and criminality were especially prevalent among immigrants, and that they were increasing at an alarming rate.114

Robertson concludes that the act "was a social control measure, aimed at preventing (or at least reducing) criminal and morally delinquent behaviour in Alberta."115 This analysis suggests that the sterilization program in Alberta was motivated by complex social relations in which race, class, gender, disability, and sexuality played a part. Moreover, in a larger sense, sterilization was a response to a perceived threat to the integrity of Albertan society. Mary Douglas describes the "idea of society"116 as a powerful image with a particular form—"external boundaries, margins, internal structure"117—and she demonstrates how the body's boundaries can be used to

113 The act was subsequently amended twice, first in 1937 (The Sexual Sterilization Act Amendment Act, 1937, S.A. 1937, c. 47) and then in 1942 (The Sexual Sterilization Act, R.S.A. 1942, c. 194). Following the 1937 amendments, the grounds for sterilization were expanded to include the risk of mental injury to the individual or to his or her progeny. The consent requirements were also amended so that although consent was required in order to sterilize a "psychotic" individual, it was no longer needed in order to sterilize a mentally defective person. The 1942 amendments expanded the classifications of mental disability or illness to which the act applied and thus, the power of the board to authorize the sterilization for a broader range of individuals: Muir v Alberta (1996), 179 A.R. 321 at 360-61,132 D.L.R. (4th) 695. 114 7Z>/W.at370.

115

116

117

Ibid

Douglas, Purity and Danger, supra note 6 at 114.

Ibid

202

The Right to Bodily Integrity 1116

McGiLL LAW JOURNAL/REVUE DE DROITDE McGm

[Vol. 49

express danger to the boundaries of the group.118 Drawing on Douglas' work, Lock and Scheper-Hughes observe that: [WJhen a community experiences itself as threatened, it will respond by expanding the number of social controls regulating the group's boundaries. Points where outside threats may infiltrate and pollute the inside become the focus of regulation and surveillance. The three bodies—individual, social, and body politic—may be closed off, protected by a nervous vigilance about exits and entrances.119 This would seem to dovetail with Robertson's analysis of the operation of the Sexual Sterilization Act in Alberta. By locating the threat of "mental deficiency" predominantly in the immigrant classes, sexual sterilization was a means of simultaneously closing off certain individual bodies (to reproduction) and of surveilling and regulating the boundaries of the body politic. B. Citizenship and Reproduction Although Britain did not ultimately legislate to permit compulsory sterilization for eugenic or social reasons, the theme of regulating the boundaries of the body politic permeates the Report of the Departmental Committee on Sterilisation.120 The Brock Committee was established by the Minister for Health in 1934 to review the evidence concerning the hereditary transmission of illness and to make recommendations about the use of sterilization as a preventative measure. The Committee recommended a liberalization of the law in respect of persons who would (or might) transmit deleterious genetic characteristics to their children. This recommendation was based on two major conclusions. The first concerned the social harm engendered by the reproductive capacities of people who were classified as "mentally defective".121 The second concerned the injustice of denying mental 118

Ibid at 122-28. Supra note 3 at 65. 120 Brock Report, supra note 101. The terms of reference for the committee were: To examine and report on the information already available regarding the hereditary transmission and other cause of mental disorder and deficiency; to consider the value of sterilisation as a preventative measure having regard to its physical, psychological, and social effects and to the experience of legislation in other countries permitting it; and to suggest what further inquiries might usefully be undertaken in this connection (ibid at 3). 121 The Mental Defective Act 1913 (3 & 4 Geo. V, c. 28) established powers and procedures for ascertaining, certifying, and detaining mental defectives. Section 1 established four classes of persons who were deemed to be "defectives" within the meaning of the act. These were: (a) Idiots;... persons so deeply defective as to be unable to guard themselves against common physical dangers; (b) Imbeciles;... mental defectiveness not amounting to idiocy, yet so pronounced that they are incapable of managing themselves or their affairs, or, in the case of children, being taught to do so; 119

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

203

1117

defectives the right to be sterilized. Accordingly, the Committee framed its recommendations both in social and individual terms. The Committee's first conclusion reads: In the first place we were impressed by the dead weight of social inefficiency and individual misery which is entailed by the existence in our midst of over a quarter of a million mental defectives and of a far larger number of persons who without being certifiably defective are mentally subnormal. This mass of defectives and subnormals is being steadily recruited and is probably growing. Certainly nothing is being done to diminish it beyond the segregation of a portion of those more obviously unfitted for community life.122

The above passage provides an example of the symbolic use of the body to sustain a view of society as sick and burdened. The targeted bodies were a "dead weight" that was threatening to bring down the ailing social body. Similarly, the metaphor of contagion (evoked by the threat "in our midst... being steadily recruited and probably growing") is a potent means of communicating the relationship between individuals thought to be unhealthy and a dysfunctional and endangered society. These "symbolic equations" between the individual and social body are evidenced by the Committee's explicit concern with the impact of mental deficiency on citizenship. The Committee was all but unanimously in agreement "as to the disastrous social and economic results of ignoring defect and allowing defectives to undertake the ordinary responsibilities of citizenship."123 This characterizes the question of "mental defect" as a matter of grave social and economic concern and then projects this concern onto overtly political terrain. The social world is thus divided into normal and defective, where the former enjoys the benefits (and bear the worries) of citizenship, and the latter are literally cast to the margins of civil society. (c) Feebleminded persons;... mental defectiveness not amounting to imbecility, yet so pronounced that they require care, supervision and control for their own protection or the protection of others... (d) Moral imbeciles; ... persons who from an early age display some permanent mental defect coupled with strong vicious or criminal propensities on which punishment has little or no deterrent effect. The meaning of "mental defectiveness" received further statutory elaboration with the passage of the Mental Deficiency Act 1927 (17 & 18 Geo. V, c. 33) which, among other things, amended section 1 of the principal act. The definitions of idiot, imbecile, and feeble-minded persons were substantially returned, although the requirement that the defect have been present from "birth or an early age" was removed. The class "moral imbecile" was replaced by "moral defective" which was defined as "persons in whose case there exists mental defectiveness coupled with strongly vicious or criminal propensities and who require supervision and control for the protection of others." Furthermore, a new subsection (2) provided that for the purposes of section 1: "mental defectiveness" means a condition of arrested or incomplete development of mind existing before the age of eighteen years, whether arising from inherent causes or induced by disease or injury. 122 Brock Report, supra note 101 at 55. 123 Ibid at 31.

204

The Right to Bodily Integrity 1118

McGiLL LAW JOURNAL/REVUE DE DROITDE McGm

[Vol. 49

This construction of sterilization as a question of civil responsibility also encompassed a notion of reproductive responsibility. This responsibility was framed in economic terms. The Committee observed that many of the "mental defectives" were economically disadvantaged and living in slum conditions.124 It found further that "mental defectives" made inefficient parents and "the vast majority of [them] are temperamentally and socially unfitted for parenthood."125 This alone was reason enough for sterilizing them:126 We know also that mentally defective and mentally disordered parents are, as a class, unable to discharge their social and economic liabilities or create an environment favourable to the upbringing of children, and there is reason to believe that sterilisation would in some cases be welcomed by the patients themselves. This knowledge is in our view sufficient, and more than sufficient, to justify allowing and even encouraging mentally defective and mentally disordered patients to adopt the only certain method of preventing procreation.127 These passages disclose a significant overlapping of eugenic, social, and individual best interests as grounds for sterilization. Within the Committee's framework, sterilization was not only good for society and the family, it was also good for the individuals being sterilized. C. Multiple Motives Although eugenic sterilization was commonly endorsed in terms that focused on the urgent need to relieve the social burdens associated with mental deficiency, this was not exclusively so. There is evidence to suggest that compulsory sterilization was also framed as a measure that would serve the best interests of the individuals concerned. In a report entitled Some Aspects of Sterilization in British Columbia with Special Reference to Patients Sterilized at Essondale Provincial Mental Hospital

124

The Brock Report adopts the classification "social problem group" to describe the concentration of mental defectives and subnormals in lower socio-economic conditions: High grade mental defect occurs proportionately more frequently in the lowest social stratum than in the rest of the population. In this stratum there appears to be an unduly high incidence of mental defect, insanity, intellectual dulness [sic], epilepsy, as well as tuberculosis and other physical defects. Cause and effect of the conditions found in the social problem group are debatable, but it is possible that selective mating may to a large extent account for this concentration of physical defects and mental defects and disorders. There is evidence that in the poorest districts neighbour marries neighbour, and like marries like (ibid at 21). 125 Ibid at 37. 126 "Defectives make inefficient parents; if only for social reasons they should not have children" (ibid at 31). 127 Ibid at 39.

The Right to Bodily Integrity 2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

205 1119

since 1935,12* the perceived benefits of the British Columbia legislation were articulated in the following way: It is a protection, not a punishment, it therefore carries no stigma or humiliation.... It permits many patients to return to their homes, who would otherwise be confined to institutions for years.... It protects children from being born to be brought up by mentally diseased or mentally deficient parents or by the state.... It takes a great burden of expense off the taxpayers, and enables the state to care for more patients than would otherwise be possible.... It enables many handicapped persons to marry and have a life normal in most respects.... It is a practical and necessary step to prevent racial deterioration.129 As this list indicates, there was a preparedness to rationalize compulsory sterilization in terms of individual benefit. Indeed, three of the six reasons offered as justifications for compulsory sterilization concerned benefits that would accrue directly to the individual, namely, protection, autonomy, and normality. The second major conclusion of the Brock Report also illustrates this point: hi the second place, we were increasingly impressed by the injustice of refusing to those who have good grounds for believing they may transmit mental defect or disorder and who are in every way unfitted for parenthood the only effective means of escaping from a burden which they have every reason to dread. ... Without some measure of sterilisation these unhappy people will continue to bring into the world unwanted children, many of whom will be doomed from birth to misery and defect. We can see neither logic nor justice in denying these people what is in effect a therapeutic measure.130 The switch in focus from the social body to the individual body highlights some interesting interpretations both of sterilization as a social practice and of its value to the individual bodies targeted. The Committee interpreted sterilization as a therapeutic measure because it would unburden the targeted groups from the onerous responsibility of child bearing and rearing.131 Moreover, as a therapy that would 128 [Stewart Report]. This report, dated 17 August 1945, was authored by M. Stewart. The Stewart Report was discovered in the provincial archives among documents catalogued as records of the Provincial Secretary from 1929 to 1947. Extracts of the Stewart Report appear in D.E. (Guardian ad litem of) v. British Columbia, [2003] B.C.J. No. 1563 (QL), 18 C.C.L.T. (3d) 169, 2003 BCSC 1013 (Sup. Ct) at paras. 40-55 [D.E. v. B.C.]. 129 D.E. v. B.C., ibid, at para. 48, citing the Stewart Report, hi this quotation, the Stewart Report quotes passages from a paper published by the Human Betterment Foundation of Pasadena, California, describing the perceived benefits of eugenic sterilization. 130 Brock Report, supra note 101 at 55. 131 It is worth bearing in mind that reliable contraception was not available at the time that the committee compiled its report.

206

The Right to Bodily Integrity

1120

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

improve individual well-being, it was considered unjust to deny access to the procedure. There are clear echoes of this thinking in the commentary surrounding the sterilization of A.R. This reading of the Committee's report demonstrates the extent to which the practice of compulsory sterilization, even within the framework of eugenic theory, was simultaneously justified as a social benefit and as an individual benefit. D. Imagining the Past Eugenic theory has been roundly discredited as scientifically invalid and is widely regarded as morally repugnant. But, as mentioned already, it remains a critical reference point for contemporary sterilization discussions. Arguments on both sides of the sterilization debate are framed in ways that draw upon the collective sense of repugnance aroused by the spectre of eugenic sterilization. In the media flurry that surrounded the castration of A.R., for example, one commentator observed: We have a sad history of eugenics in this country, especially in Alberta, where thousands of people were sterilized against their will between 1928 and 1972 because they were deemed mentally incompetent. Alberta, in fact, was the model for the eugenics movement that sprang up in Nazi Germany and led to the slaughter of six million Jews as well as countless others considered sub-human. Perhaps in a bid to assuage our guilt, we have let the pendulum swing too far to the other side.132 The contention here appears to be that, notwithstanding a history of abuse that truly shocks the conscience, compulsory sterilization may not be problematic in every case. Indeed, the implication seems to be that A.R.'s case may well be one in which the Canadian law with respect to sterilization has led to injustice. The manner in which the issue has been framed in the passage above acknowledges the historical misapplication of compulsory sterilization, but does not take the additional step of questioning its legitimacy per se. This distinction between the basic legitimacy of compulsory sterilization and its practical application appears to underpin the manner in which English courts have approached its legality. Re B.,133 the first House of Lords case of its kind, held that the wardship jurisdiction could be used to justify the non-consensual sterilization of an incapacitated minor.134 The case involved an application for the sterilization of a

132

Jacobs, supra note 1. Supra note 79. 134 The Law Lords decided that non-consensual sterilization could only be lawful if it was in the best interests of the woman concerned to become permanently prevented from becoming pregnant. In relation to women under the age of majority, the juridical basis for the declaration was the court's wardship jurisdiction, which confers the court with power to act in the best interests of the ward. The later decision, Re E, supra note 78, found that in the case of an adult woman with learning difficulties, the sterilization may also be declared by a court to be lawful if it is shown to be in her best 133

The Right to Bodily Integrity 2004]

K. SAVELL- STERILIZATION AND BODILY INTEGRITY

207 1121

seventeen-year-old woman, who had significant learning difficulties. She was showing signs of sexual awareness, and her caregivers thought that pregnancy would be an "unmitigated disaster" for her. They also thought that other contraceptive options were unsuitable. The Law Lords emphatically rejected that social or eugenic reasons might be relevant to the decision to sterilize: My Lords, none of us is likely to forget that we live in a century which, as a matter of relatively recent history, has witnessed experiments carried out in the name of eugenics or for the purpose of population control, so that the very word "sterilisation" has come to carry emotive overtones. It is important at the very outset, therefore, to emphasise as strongly as it is possible to do so, that this appeal has nothing whatever to do with eugenics.135 Lord Oliver's disclaimer is repeated with equal force in the speeches of Lords Hailsham and Bridge.136 The sterilization of B. was in her best interests and had "nothing whatsoever to do with eugenic theory."137 Insofar as the Law Lords had in mind the sort of sterilization program that was implemented in Alberta in 1933, there is obvious force in the disclaimer. However, as the above analysis shows, the eugenic reforms of that era were not without supporting arguments that spoke to the question of individual best interests. The House of Lords did not address the possibility that "best interests" might not always be clearly distinguishable from other reasons for sterilization: [T]his case is not about sterilisation for social purposes; it is not about eugenics; it is not about the convenience of those whose task it is to care for the ward or the anxieties of her family; and it involves no general principle of public policy. It is about what is in the best interests of this unfortunate young woman and how best she can be given the protection which is essential to her interests. The juridical basis for the sterilization of an adult woman in these circumstances is the doctrine of necessity. This permits a doctor to provide medical treatment to a person who is unable to consent if the treatment is in their best interests. Medical treatment is thought to be in a person's best interests when it is necessary to preserve the life or prevent a deterioration of the physical or mental health of the person. 135 Supra note 79 at 207, Oliver LJ. 136 Lord Hailsham says, "In particular there is no issue of public policy other than the application of the above [best interests] principle which can conceivably be taken into account, least of all (since the opposite appears to have been considered in some quarters) the question of eugenics" (ibid at 202). 137 A further point that emerges from Lord Oliver's passage concerns the labelling of potential critics of sterilization practices as emotive. This has a familiar ring about it In 1957, Glanville Williams said "[s]o deeply is the sexual instinct implanted within us that the word 'sterilization,' until one gets used to it, gives an unpleasant emotion" (supra note 109 at 74). Eugenics campaigners in the 1920s also adverted to the irrationality of their detractors by labelling objections to the practice as emotive. As a measure of its continuing resonance, it is worth noting that this reference has also found its way into subsequent judgments. In Re D. (a Minor) (Wardship: Sterilisation) (1975), [1976] 1 All E.R. 326, 2 W.L.R. 279 (Fam. Div.) [Re D.], Heilbron J. records the view of D.'s doctor that "[sterilisation is now an emotive word, and we must try to change its image" (at 331). Similarly, in Re M. (a Minor) (Wardship: Sterilization) (1987), [1988] 2 F.L.R. 497 (Fam. Div.) [Re M], the court records an expert witness's opinion that "he regards the operation more as one of contraception than sterilization, with all the emotive feelings that the use of the word 'sterilization' arouses" (at 298).

208

The Right to Bodily Integrity

1122

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

future wellbeing so that she may lead as full a life as her intellectual capacity allows.138

There are two important points that emerge from this passage. The first is that there are legitimate (best interests) and illegitimate (social, eugenic) reasons for nonconsensual sterilization. The second important point is that the Law Lords seem to have assumed that the two sets of considerations (best interests and eugenic or social interests) were conceptually distinct, so that the latter were merely irrelevant to the best interests test. Like the House of Lords, the Supreme Court of Canada was also conscious of the problematic application of eugenic theory in the recent past. Accordingly, past eugenic practice was a reference point in the court's deliberations in Re Eve139 on whether the parens patriae power could be used to justify compulsory sterilization of an incapacitated woman. Unlike the House of Lords, however, the Supreme Court was more circumspect about the discontinuity between sterilization for eugenic reasons and sterilization in an individual's best interests: There are other reasons for approaching an application for sterilisation of a mentally incompetent person with the utmost caution. To begin with the decision involves values in an area where our social history clouds our vision and encourages many to perceive the mentally handicapped as somewhat less than human. This attitude had been aided and abetted by now discredited eugenic theories whose influence was felt in this country as well as the United States.140

The approach taken here is quite different from the approach taken by the House of Lords. Both courts acknowledge the "wrongness" of eugenically or socially motivated sterilization. But whereas the House of Lords sought to establish two distinct conceptual spaces—one for "problematic" sterilization practices and one for sterilization in an individual's best interests, the Supreme Court of Canada resisted such distinctions. It did so on the basis that the "problematic" sterilization practices, and the theories that underpinned them, have an enduring legacy. This legacy echoes in the manner in which disabled people are constituted as less than human and are, therefore, more susceptible to reproductive regulation. Whether the strategy is to disclaim or acknowledge connections with the past, it seems apparent that eugenic practices, and the theories of subjectivity that sustained them, are particularly difficult to escape. The bodies politic that encouraged eugenic sterilization continue to function symbolically for modern law as a terrifying reference point, which either demands containment or serves as a reminder of the need for vigilance. In this sense, the abhorrent body politic operates as a limit and a threat to the self-image of legal cultures wishing to present themselves as liberal, open, and democratic. 138

Supra note 79 at 212.

140

Ibid, at para. 78, La Forest J.

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

209

1123

III. Sex, Integrity, and the Individual Body

At the very least then, the practice of non-consensual sterilization poses a challenge to liberal understandings of the role of law as a mediator between the individual and the social body. Non-consensual sterilization prima facie offends the principle that individuals are entitled to have their bodies protected from intrusion. On the other hand, pregnancy and birth involve considerable bodily changes, which may negate the best interests of the individual or social body. Thus, another notable correspondence between past and present sterilization practices is the theme of bodily integrity and, in particular, the relationship between the notion of integrity and social order. In the past, sterilization was framed primarily as a measure necessary to protect the integrity of the social body. That primary focus has now shifted to the individual body, with the result that the Canadian common law prohibition on non-therapeutic sterilization has been framed in terms of law's commitment to the bodily integrity of all individuals. English law also respects the bodily integrity of individuals, although this has not prevented English courts from deciding that the non-therapeutic sterilization of learning disabled women is permissible. How is it that Canadian and English law, while both claiming to protect bodily integrity, have reached opposing conclusions about whether non-therapeutic sterilization can be in a person's best interests? The answer could lie in the manner in which courts have constructed the bodies of learning disabled men and women in the sphere of sexuality and reproduction. The manner in which a dilemma is framed involves political and moral judgments.141 It follows that the solutions offered to resolve the dilemma will, in large measure, have been shaped by the original conception of the problem and the perceptions upon which this conception relied.142 Perceptions are not, of course, uniform and nor, accordingly, are the ways in which dilemmas are framed. This much has already been demonstrated in the discussion of A.R., where the dilemma was framed differently according to the dominant concerns of the commentators. Thus, when a commentator agreed that A.R. was a subject in need of control in his own and others' interests, the legal action taken against his mother seemed unjust and unfair. Conversely, when a commentator was concerned about the implications for society of allowing castration to control individual members, the legal action taken against A.R.'s mother seemed just. Robert Cover conceptualizes narratives as "models through which we study and experience transformations that result when a given simplified state of affairs is made

141

See Carl Elliot, "Where Ethics Comes From and What To Do About It?" (1992) 22:4 Hastings Center Report 28. Elliot observes that "in describing a given case, one has done much of the ethical work already. A person's moral judgement is reflected in what he [or she] chooses to include in a description" (at 28). 142 See Mary Segers, "Abortions and the Culture" in Sidney Callahan & Daniel Callahan, eds., Abortion: Understanding Differences (New York: Plenum Press, 1984) at 247.

210

The Right to Bodily Integrity

1124

McGiLL LAW JOURNAL/REVUE DE DROITDE McGm

[Vol. 49

to pass through the force field of a similarly simplified set of norms."143 This form of analysis is relevant to law because narratives serve the purpose of locating and giving meaning to legal prescriptions.144 Perhaps this can explain why English and Canadian courts tell different versions of the story of compulsory sterilization, which is to say, different ways of conceptualizing the learning disabled body and relating that conception to norms and values as a basis for formulating a legal response.145 There are two narratives that have been developed by English and Canadian courts in respect of applications for contraceptive sterilization. The "invasion" narrative prevents doctors from interfering with bodies without consent, in anything other than exceptional circumstances. This narrative engages the concepts of "dignity", "inviolability of the person", and "bodily integrity" and deploys metaphors of invasion to problematize the imposition of sterilization without consent. This narrative is framed by Blackstone's "sacred" body. The second narrative gives a different complexion to non-consensual sterilization. Like the inviolate body of the invasion narrative, the body is in need of medical attention. Within this narrative, however, sterilization constitutes a rescue. Accordingly, the body within this framework does not (indeed, cannot) resist medical interference in the name of inviolability, freedom, or dignity, in large measure because the interference itself has been re-characterized as benign, even virtuous. Within the rescue narrative, the body represents "disorder" because its reproductive capacities are not contained. Once characterized as disordered in this symbolic sense, attempts to restore order (by removing the threat of pregnancy) can be cast as acts of liberation rather than invasion. In this larger sense, actions that might, at first blush, appear oppressive, are recast as freedom-enhancing and thus brought within liberal understandings of the relationship between the individual and the state. A.

Eve and the Sacred Body

The inviolability of the person was a central concern in Re Eve, the leading Canadian decision on non-consensual sterilization. Eve was a twenty-four-year-old woman who suffered from a condition known as extreme expressive aphasia. The condition made it difficult for her to communicate with others and, according to the

143

Robert M. Cover, "The Supreme Court 1982 Term-Forward: Nomos and Narrative" (1983) 97 Harv. L. Rev. 4 at 10. 144 While Cover seems more interested in the broader point that narratives give meaning to legal institutions and their processes, he also acknowledges the relationship between narrative and legal prescriptions: "We constantly create and maintain a world of right and wrong, of lawful and unlawful, of valid and void ... No set of legal institutions or prescriptions exists apart from the narratives that locate it and give it meaning" (ibid at 4). 145 According to Cover, "[t]he codes that relate our normative system to our social constructions of reality and to our visions of what the world might be are narrative. The very imposition of a normative force upon a state of affairs, real or imagined, is the act of creating narrative" (ibid at 10).

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

211

1125

medical evidence, she was "at least mildly to moderately retarded."146 From the age of twenty-one, Eve had been attending boarding school during the week and spending weekends with her mother, Mrs. E. While at the school, Eve had "struck up a close friendship with a male student" that was "brought ... to an end"147 by the school authorities. Nonetheless, Mrs. E. became anxious "that [Eve] might quite possibly and innocently become pregnant." She felt that Eve would be adversely affected by pregnancy and birth and, moreover, that Eve "could not adequately cope with the duties of a mother."148 Mrs. E. was concerned that the responsibility to care for Eve's prospective child would fall on her. However, as a widow approaching sixty, she felt unable to assume this role. Mrs. E. decided that Eve should be sterilized so that she would be protected from the consequences of pregnancy and birth. She applied to the Supreme Court of Prince Edward Island for an order recognizing that she could consent to a tubal ligation being performed on Eve. The application was denied. McQuaid J. concluded that: the court had no jurisdiction to authorize a surgical procedure on a mentally retarded person, the intent and purpose of which was solely contraceptive. It followed that, except for clinically therapeutic reasons, parents or others similarly situated could not give a valid consent to such a surgical procedure either, at least in the absence of clear and unequivocal statutory authority.149

The fact that the sterilization was not medically necessary persuaded McQuaid J. that no basis existed for the granting of Mrs. E.'s application. At the root of this objection lay McQuaid J.'s conviction that "Eve, like other individuals, was entitled to the inviolability of her person."150 As Mrs. E. had contended that Eve had a right to be protected from pregnancy, McQuaid J. resolved the apparent conflict by appealing to "physical integrity" as the "higher right".151 This decision was overturned by the Prince Edward Island Court of Appeal, which held that the court's parens patriae power did confer jurisdiction to authorize a non-therapeutic sterilization. But although the judges agreed on the question of jurisdiction, there were differences in approach to the substantive question. McDonald J.A., dissenting, would not have authorized Eve's sterilization on the evidence before the court. Large and Campbell JJ.A., thought that the sterilization offered Eve protection from pregnancy and that this outweighed her interest in bodily inviolability. Campbell J.A. thought that a court could only reach a decision about contraceptive sterilization by examining the particular circumstances. He took the view that:

146

Supra note 75 at para. 4. 7Z>*W. atpara.2. 148 7Z>/W. at para. 3. 149 7M at para. 7. 150 Ibid. 151 Ibid. 147

212

The Right to Bodily Integrity

1126

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

The real and genuine object of the proposed sterilization was [Eve's] protection. There was no overriding public interest in it. And there was a likelihood of substantial injury to her if the operation was not performed.... In the absence of permanent sterilization, the protected environment Eve enjoyed would become a guarded environment. This would deprive her of social options and relative freedom.152 It is apparent from this passage that the court regarded pregnancy as a "substantial injury". Furthermore, it is implied that Eve's fertility was also a source of injury to her to the extent that it prevented caregivers from allowing her to explore "social options and relative freedom". Framed in this way, the sterilization operation was not primarily an infringement of her rights and bodily integrity. It was, rather, a measure adopted to enhance her freedom and well-being. Finally, it is also noteworthy that the court mentioned the absence of any overriding public interest in Eve's sterilization. This observation echoes with the disclaimers issued by the House of Lords in Re B.9 and it would appear that the intention is the same, namely to dismiss any suggestion that there is a social or eugenic dimension to the authorized sterilization. The Supreme Court of Canada overturned this decision and, accordingly, refused to exercise its parens patriae jurisdiction to authorize the compulsory sterilization of Eve. It held that although the jurisdiction was broad enough to cover the provision of medical treatment necessary to protect the mental or physical health of a person,153 it would not extend to non-therapeutic sterilization. This is because it was doubtful whether sterilization for contraceptive purposes could be in the best interests of a woman.154 Sterilization involved irreversible and, in the case of hysterectomy,155 major invasive surgery. It also involved a deprivation of "the great privilege of giving birth".156 There was also evidence before the Court that sterilization had a considerable negative psychological impact: Sex and parenthood hold the same significance for [learning disabled people] as for other people and their misconceptions and misunderstandings are similar. Rosen maintains that the removal of an individual's procreative powers is a matter of major importance and that no amount of reforming zeal can remove the significance of sterilization and its effect on the individual psyche. In a study by Sabagh and Edgerton it was found that sterilized mentally retarded persons tend to perceive sterilization as a symbol of reduced or degraded status.... 152

7Z>/W. atpara. 16. Ibid at para. 77. 154 "To begin with, it is difficult to imagine a case in which non-therapeutic sterilization could possibly be of benefit to the person on behalf of whom the court purports to act, let alone one in which that procedure is necessary to his or her best interest" (ibid at para 87). 155 A majority of the Court of Appeal held that it was in Eve's best interests to be sterilized and reserved its approval for the method of sterilization to be followed, pending further submissions. Notably, although Mrs. E. originally applied for authorization for a tubal ligation, after hearing submissions regarding the medically preferred procedure, the court ordered a hysterectomy. 156 Supra note 75 at para. 79. 153

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

213

1127

The psychological impact of sterilization is likely to be particularly damaging in cases where is a result of coercion and when the mentally handicapped have no children.157

Many of the arguments advanced to support the contention that sterilization was in Eve's best interests were rejected. In response to the claim that Eve needed protection from the trauma of birth, the Court found that 'there is no evidence that giving birth would be more difficult for Eve than for any other woman."158 In response to the claim that Eve was not fit to parent a child, the Court was equally circumspect: Studies conclude that mentally incompetent parents show as much fondness and concern for their children as other people. Many, it is true, may have difficulty coping with the financial burdens involved. But this issue does not relate to the benefit of the incompetent; it is a social problem, and one, moreover, that is not limited to incompetents.... Indeed, there are human rights considerations that should make a court extremely hesitant about attempting to solve a social problem like this by this means. It is worth noting that in dealing with such issues, provincial sterilization boards have revealed serious differences in their attitudes between men and women, the poor and the rich, and people of different ethnic backgrounds.159

Thus, the Court was acutely aware of the intersection of sex, ethnicity, and class with disability in the manner in which sterilization decisions had been made in the past, casting doubt on the impartiality of the "unfitness to parent" ground for seeking sterilization. This particular anxiety dovetailed with the Court's broader concern about the impact of history and social disadvantage hi shaping negative beliefs about the personhood of learning disabled people. One of the key concerns for the Supreme Court of Canada in Re Eve was the manner in which learning disabled men and women had been socially constructed as qualitatively different from other people in terms of sexuality, reproduction, and capacity to fulfill the social roles of parenting. These constructions developed against a legal and social background hi which the bodily integrity of learning disabled people was disregarded and their reproductive contributions to the social body considered unnecessary and undesirable. The Law Reform Commission of Canada found evidence to suggest that disabled people have been constituted hi social terms as less than human. In the Working Paper on Sterilization, the Commission uses the phrase "presumption of qualitative difference" to describe one of the most problematic features of social perception concerning disability:160 Mental handicap becomes translated as a characterization of the whole person rather than just one aspect of that person. The danger in such characterization is that all problems that arise in relation to this class of people are seen as a 151

Ibid at para. 80. *lbid at para. 21. 159 Ibid at para. 84 [references omitted]. I5

160

Law Reform Commission of Canada, Working Paper 24: Sterilization: Implications for Mentally Retarded and Mentally HI Persons (Ottawa: Law Reform Commission of Canada, 1979) at 66.

214

The Right to Bodily Integrity

1128

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

function of the handicap. Such persons are thereby a priori defined as deviants and the implication is that they cannot be entrusted to understand their own situation or to make decisions concerning their own welfare.161

One of the forms that this presumption might take concerns the identification of the mentally disabled person with a "subhuman organism"162 with different needs and feelings and therefore not entitled to the same rights and privileges as others.163 According to the Commission, this presumption denies the unique identity of the person and it denies them social status. The Supreme Court was quite obviously careful to avoid perpetuating the presumption of qualitative difference. There was no attempt to frame Eve's procreative powers as less important to her than other women, nor to minimize the significance of her bodily integrity: The grave intrusion on a person's rights and the certain physical damage that ensues from non-therapeutic sterilization without consent, when compared to the highly questionable advantages that can result from it, have persuaded me that it can never safely be determined that such a procedure is for the benefit of that person. Accordingly, the procedure should never be authorized for nontherapeutic purposes under theparenspatriae jurisdiction.164

Thus, sterilization was not a protective but rather an intrusive measure that caused physical damage and a "grave intrusion on rights". In short, the court interpreted the right to bodily integrity strictly so that Eve's body was inviolable to the social and medical pressures to render it "closed off" to reproduction. B. The Disordered Body In contrast to the Supreme Court of Canada, the House of Lords in Re B. rejected the therapeutic/non-therapeutic distinction as a basis for determining the lawfulness of sterilization. Lord Hailsham found this distinction "totally meaningless, and, if meaningful, quite irrelevant to the correct application of the welfare principle."165 Lord Bridge also thought it unhelpful and likely to "divert attention from the true issue, which is whether the operation is in the ward's best interest, and remove it to an area of arid semantic debate as to where the line is to be drawn between 'therapeutic' and 'non-therapeutic' treatment."166 The House of Lords, unlike the Supreme Court, accepted the conceptual possibility that a non-therapeutic sterilization could be in a woman's best interests, and seemed to have few (if any) doubts about the court's ability to make the correct assessment.

™Ibid.

162 163 164

Ibid

Re Eve, supra note 75 at para 86. 165 ( Supra note 779 at 204. 166 Ibid at 205.

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

215

1129

Since Re B., English courts have heard a number of applications for nonconsensual sterilization of learning disabled women, many of which have been granted.167 There has been one application in respect of a learning disabled man, which was refused.168 In other words, to date, only women have been the subject of declarations that sterilization is in their best interests. This alone raises some interesting questions in light of the foregoing analysis concerning the masculinity of the inviolable body of law. Three considerations have almost always formed part of the best interests determination: the risk of pregnancy, the trauma of pregnancy and childbirth, and the unfitness of the woman to parent. In each of these categories, norms of sexual behaviour and reproductive responsibility function to produce the learning disabled woman as marginal and, therefore, in need of sterilization for her own protection. C. Sexuality: The Available Body The claim that sterilization will promote sexual autonomy in an individual's best interests requires some analysis. In order to understand and test the claim, it is important to consider the ways in which English courts have conceived of the sexuality of learning disabled women. In Re B.9 the House of Lords regarded B.'s sexuality as dangerous. Lord Hailsham stated that B. "has all the physical sexual drive and inclinations of a physically mature young woman of 17"169 and moreover, that "she has already shown that she is vulnerable to sexual approaches, she has already once been found in a compromising position in a bathroom."170 Lord Oliver added that the "signs" of B.'s sexual awareness were exemplified by "provocative approaches to male members of the staff and other residents and by touching herself in the genital area."171 Lord Hailsham expressed the view that B. "would not be able to give informed consent to any act of sexual intercourse and would thus be a danger to others."172 Although it is not clear what Lord Hailsham meant by this,173 it is possible that he was adverting to one of two possibilities: either to the possibility that a man who did not recognize B.'s incapacity may be exposed to an allegation of sexual assault, or that this man, or society generally, would be exposed to the "danger" of becoming responsible for a child. McCarthy suggests that historically, learning disabled people have been constructed as either oversexed or eternally childlike. The former is "based on the idea that they were unable to control themselves and historically it had sometimes also

167

These cases are discussed in some detail below in Sections C-E. ReA,supranotG96. 169 Supra note 79 at 202, Hailsham LJ. 170 Ibid 171 Ibid at 208, Oliver LJ. 172 7Z>*W.at202. 173 Dillon LJ. also adverted to the possibility that B. could be a danger to others. m

216

The Right to Bodily Integrity

1130

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

been believed that they possessed a 'super-human' strength, so they could not easily be controlled by others."174 McCarthy adds that [w]ithin the belief system that saw people with learning disabilities as potentially dangerous, the effect this had on ideas about their sexuality are clear: it was thought that people with learning disabilities would have an uncontrolled sexuality, that they would be "over-sexed", sexually promiscuous. In short, they were thought to be a potential sexual threat to others.175

There are traces of this thinking in A.R.'s case as well as Re B. The second of these historical constructions is the stereotype of the "eternal child". The effect of this stereotype is to associate people with learning difficulties with "child-like interests and pursuits" and to treat them "as if they were children." This stereotype stands in contradiction to the first, so that within the "eternal child" framework, "people with learning disabilities were thought quite simply not to be sexual beings."176 The English sterilization cases decided since Re B.9 have not openly embraced either the "oversexed" or "eternal child" stereotypes. But they have hinted at imagined sexual promiscuity on the one hand, and childlike vulnerability, on the other. Many courts have adopted the descriptive phrase "normal sexual urges" to describe the sexual drive of the woman in respect of whom the application has been made. This assessment of "normality" of sexual drive is, however, juxtaposed with the abnormality of the woman's intellectual development, suggestively expressed in equivalences to the "mental age" of children. To the extent that the juxtaposition of adult sexual feeling with child development creates a sense of incongruity, this approach may fall somewhere between the stereotypes outlined by McCarthy. To illustrate, in Re P. (a Minor) (Wardship: Sterilization) T. was described as having an intelligence "limited to that of a child of 6 ... [but] the sexual libido appropriate to a girl of 17 ... "177 There were some differences of opinion between the psychiatrists who gave evidence, but the court preferred the view of psychiatrist Dr. Michael Heller that: She appears to be the possessor of a normal libido (sexual drive) and when in an unsupervised setting with a sexually active male the likelihood of intercourse is high, especially if he should be unscrupulous and ready to take advantage of her. Theoretically, she might be "warned off" but girls like T are readily seduced, particularly if their inhibitions are allayed by alcohol. I rate her as very vulnerable in this context178

174

Michelle McCarthy, Sexuality and Women with Learning Disabilities (London: Jessica Kingsley, 1999) at 53. 175 Ibid 176 Ibid 177 Re P. (a Minor) (Wardship: Sterilisation) (1988), [1989] 1 RL.R. 182 at 183 (Fam. Div.) [Re R\. 178 Ibid at 192.

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

217

1131

He also attested that "[T.] is quite an attractive girl and could be at risk of influence or exploitation."179 The court concluded "the evidence is that she is attractive, her sexual urges are appropriate to her age and people of her limited intellect are particularly vulnerable."180 In short, this woman was regarded as sexually suggestible and, therefore, vulnerable to seduction. A similar construction is at work in Re W. (Mental Patient) (Sterilisation).1*1 W. was described as a "friendly outgoing girl"182 who, although not "promiscuous", might be led into a position where "someone might take advantage of her."183 One of the disconcerting aspects of these judicial engagements with the vulnerable/suggestible woman is the extent to which this body is constructed as an object of sexual gratification for a man. In Re P., T. was described as "a perfectly normal and reasonably attractive young lady of 17."184 Given that T. was specifically before the court because she lacked capacity, it is reasonable to assume that the use of the term "normal" here should be read as a reference to her physical appearance. In another case, L.C. was described as "physically very attractive".185 She was, furthermore "very demonstrative and accordingly... vulnerable to abuse."186 Similarly, S. was described as a "charming and attractive young woman and to all outward appearances entirely normal"187 so that "the anxiety is that... some man will be able to contrive a situation in which S is subjected to sexual intercourse and may become pregnant."188 The suggestion is that women who, in the court's estimation, are physically attractive to men will engage in sexual activity with men. Furthermore, the assumption seems to be that such sexual activity will be welcomed. In T. v. r, T. was already fourteen weeks pregnant. She was described as "attractive to look at" and therefore in need of protection to "avoid further pregnancies."189 According to the evidence, T. was completely dependent, her communication extremely limited, doubly incontinent and in need of changing six to eight times a day. She had "no understanding of the physical workings of her body,"190 and she was often destructive and uncooperative. Yet she was pregnant "despite the

179

7M at 191. 7Z>/W.atl94. 181 (1992), [1993] 1 F.L.R. 381, [1993] 2 F.C.R. 187 (Fam. Div.) [Re W. cited to F.L.R.]. 182 7M at 382. l 3 * Ibid at 383. 184 Supra note 177 at 182. 185 Re LC. (Medical Treatment: Sterilisation) (1993), [1997] 2 F.L.R. 258 at 258 (Fam. Div.). 180

187

Re S. (Medical Treatment: Adult Sterilisation), [1998] 1 F.L.R. 944 at 944, [1999] 1 F.C.R. 277 (Fam. Div.) [Re S. cited to F.L.RJ. 188 7Z>/W.at945. 189 TV r(1987), [1988] 1 All E.R. 613 at 616, [1988] 1 F.L.R. 400 (Fam. Div.) [T. v T cited to All E.RJ. m lbid at 615.

218

The Right to Bodily Integrity

1132

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

excellent care of all those around her."191 This case, in particular, highlights limitations in the manner in which English courts have constructed learning disabled women as attractive and therefore vulnerable to seduction. Another possible interpretation of the evidence is that T. was sexually assaulted rather than seduced. Admittedly, the distinction between welcome and unwelcome sexual activity is often difficult to draw. Even so, the issue of sexual assault appears to be secondary to the question of whether or not sexual intercourse will happen. In Re H.G (Specific Issue Order: Sterilisation), T. who was seventeen-years-old and not sexually active, was described as "a happy person with a great fund of sociability" and "very trusting because she has been dealt with throughout her life lovingly."192 The court did not distinguish between voluntary and non-voluntary sexual intercourse in the decision to sterilize: She is physically mature. She is a woman. She is sexually at risk from hostile strangers. She is, more encouragingly, able—and perhaps more so as time passes—perhaps to form a sexual relationship, perhaps amongst her peer group at the school where she lives, from which she will derive satisfaction and of which no one would seek to deprive her.193 This passage echoes vividly with Frug's contention that the female body as it is constituted in law is a body for sex with men.194 Moreover, this attitude of resignation to the possibility of sexual assault obviated the need to look to the quality of care she was receiving to judge whether more could be done to protect her from the openly recognized risk of sexual assault. The questions raised by the sexuality of learning disabled women are complex. At one end of the spectrum, a court may identify the woman as unable and unlikely to engage in voluntary sexual intercourse with men so that the risk of pregnancy is only likely to arise from a sexual assault. Since sexual encounters of this sort are unwelcome it might be persuasively argued that supervision to prevent sexual assault, rather than sterilization, is in the woman's best interests. At the other end of the

m

lbid at 614. (1992), [1993] 1 F.L.R. 587 at 590 (Fam. Div.). 193 Ibid at 590-91. 194 In her analysis of the relationship between legal rules and the body, Frug identifies three meanings for the female body: the terrorized, the sexualized, and the maternalized body. Each of these is in turn rationalized "by an appeal to ... 'natural' differences" (Mary Joe Frug, "Commentary: A Postmodern Feminist Legal Manifesto (An Unfinished Draft)" (1992) 105 Harv. L. Rev. 1045 at 1049). Frug contends that laws that "inadequately protect women against physical abuse and ... encourage women to seek refuge against insecurity" support the meaning of a female body as "a body that is 'in terror'" (ibid at 1049). Similarly, laws that concern the prohibition or regulation of commercial sex, rape, homosexuality, and pornography support the meaning of a female body as "a body that is 'for' sex with men, a body that is 'desirable' and also rapable" (ibid at 1050). Finally, laws that reward women for child-bearing and rearing and penalize them for having abortions or working when they have dependent children, support a meaning of the female body as "a body that is 'for' maternity" (ibid). 192

The Right to Bodily Integrity K. SAVELL - STERILIZATION AND BODILY INTEGRITY

2004]

219 1133

spectrum, a court may decide that the woman can claim some sexual autonomy for herself and that sterilization will protect her from pregnancy. In both Re B. and Re F.9 the House of Lords was satisfied that the women concerned wished to engage in sexual intercourse with men. At first instance, the court found that B. "is one of those small band of people in the mentally handicapped range in respect of whom it is desired to give as much freedom as in the circumstances is possible."195 The Court of Appeal and the Law Lords agreed. Dillon LJ. spelt out the implications of this position: Not that many years ago the risk [of pregnancy] would have been avoided because a girl with her disabilities would have been strictly institutionalised all her life. Now the best opinion is that such a person should be allowed as much freedom as possible to enjoy such a quality of life as her limited abilities will permit, with no danger to others and as little danger to herself as reasonable care can achieve.196 This analysis places considerable weight on the desirability of increasing B.'s sphere of liberty as she matured. But the greater the freedom she is given, the greater the risk that she will have sexual intercourse and become pregnant.197 This view was also accepted by the House of Lords. Lord Oliver made reference to "the increasing freedom which must be allowed her as she grows older and the consequent difficulty of maintaining effective supervision."198 Lord Hailsham stated that "[t]o incarcerate her or reduce such liberty as she is able to enjoy would be gravely detrimental to the amenity and quality of her life."199 Putting the matter this way, one can see an argument that not sterilizing her could be characterized as contrary to her interests. In her empirical research on the sexuality of women with learning disabilities, McCarthy found that most of the women she interviewed "did not consider themselves to be sexual, despite regularly engaging in sexual activity."200 McCarthy attributed this generally negative view of sex to four main factors. First, a lack of sexual agency among the women (meaning a deficit of women deciding for themselves what they wanted to do, with whom, when, and how);201 second, the nature of the sexual activity (half the study reported having only penetrative sex and the remainder, predominantly penetrative sex; over half reported anal sex which was rated negatively by all of them);202 third, the women were not generally psychologically engaged by the sexual experience; and finally, eighty-two per cent of

195

Re B. (a Minor) (Wardship: Sterilisation), [1987] 2 All E.R. 206 at 207, Bush J. (Fam. Div.) Re B, (a Minor) (Wardship: Sterilization), [1987] 2 All E.R. 206 at 209 (C.A.). 197 Ibid. 198 Re B. (H.L.), supra note 79 at 209. 199 7Z>/W.at203. 200 McCarthy, supra note 174 at 202. 201 7Z>*W.at203. 196

202

Ibid at 205.

220

The Right to Bodily Integrity

1134

McGiLL LAW JOURNAL/REVUE DE DROITDE McGm

[Vol. 49

the women interviewed described at least one act of sexual abuse. McCarthy observed that it was often difficult to distinguish between what was abusive and what was not. This must also have been difficult for the women themselves. Consider KN, for example, who would "give in" to men's demands and pressure and have sex she neither liked nor wanted, to "shut them up" and stop the pressure. Or EY who said she sometimes let men continue to have sex with her, even though it was painful, because of fears that they would hit her if she told them to stop. Or TC who was quite sure the price to be paid would be physical violence and the end of the relationship if she refused to have sex with her boyfriend. Are these acts of consented sex, pressured sex or sexual abuse?203

These findings suggest that the expression of sexuality is far more ambiguous than the reductive framework adopted by English courts suggests. It is undoubtedly the case that sexual intercourse will have different meanings for the same woman at different times according to the context. It does not necessarily follow that because a woman is sexually aware, she desires penetrative intercourse with men of her choosing, let alone men generally. Nor does it follow that because she obtains pleasure from particular sexual encounters, she obtains pleasure from them all. The central problem is that it is very difficult to know whether facilitating sexual intercourse is going to promote sexual autonomy or whether it will multiply the possibilities for the women to fall victim to sexual assault. Unfortunately, English courts are yet to engage with these complexities and have effectively only considered the woman's sexuality to the extent that it bears upon the issue of pregnancy. This means that the questions of whether sexual encounters will be welcomed or not, or how they might be managed, is subordinated to the primary question of whether they are likely to occur. D. Reproduction: The Traumatized Body The second set of reasons that have persuaded English courts that sterilization is in the woman's bests interests concerns the physical aspects of pregnancy and childbirth. In Re B.9 Lord Bridge found it "clear beyond argument that for her pregnancy would be an unmitigated disaster."204 The evidence was that although B. would "tolerate the condition of pregnancy without undue distress,"205 she would not have understood the process of childbirth. According to Lord Oliver: [T]he process of delivery would be likely to be traumatic and would cause her to panic. Normal delivery would be likely to require heavy sedation, which could be injurious to the child, so that it might be more appropriate to deliver her by Caesarean section. If this course were adopted, however, past experience of her reactions to injuries suggests that it would be very difficult to

203

Ibid at 211. Re B. (H.L.), supra note 79 at 205. 205 Ibid at 208, Oliver L.J. 204

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

221

1135

prevent her from repeatedly opening up the wound and thus preventing the healing of the post-operative scar.206

Lord Hailsham reached a similar view on the evidence, adding that "she would be 'terrified, distressed and extremely violent' during normal labour."207 The apparent paradox is that although sterilization constitutes an interference with the subject's bodily integrity, the measure protects her from an even greater level of interference, namely, pregnancy and birth. A specific factor that courts have taken into account in determining pregnancy and labour to be dangerous for the woman concerned is the long term psychological effects of a forced medically assisted delivery. This was raised by the psychiatrist in Re P. who took the view that although T. would be as capable of carrying a pregnancy and giving birth as "any other very dull girl", "special measures" might need to be adopted during labour. He added that there was "small reason to suppose that the psychological effects of these would be particularly detrimental in the long term."208 In Re M. (a Minor) (Wardship: Sterilization), this view was put with greater force, Bush J. stating that "[f]rom the point of view of J, to go through the experience of pregnancy, possibly leading at the end to a caesarean operation, would be a traumatic experience which might harm her mental health."209 There are also concerns about the efficacy of antenatal care from the perspective of the medical profession. The consultant in T. v. T. gave evidence that T. was unable to understand the concept of pregnancy, a matter that presented the following problems: It was thought that she could not cope with the difficulties or complications which might arise during the pregnancy and certainly could not cope with labour. It would be impossible to provide the usual level of antenatal care, as the defendant would not allow examination of her abdomen or allow blood samples to be taken... 21°

It was further noted that the "difficulties" which could be expected in "monitor[ing the] progress in pregnancy" and the "delay[s]" in recognizing any complications that may develop, increased the risks associated with proceeding with the pregnancy.211 There is an important, broader point to be considered here. Quite apart from whether it was in T.'s best interests to have her pregnancy terminated and for her to be sterilized, it seems clear that her participation in antenatal care is perceived as a necessary precondition to considering her as a suitable candidate for reproduction. A norm of maternal co-operation with medical staff is thus instantiated. The same

206

Ibid, at 208-209. 7M at 202. 208 Re R, supra note 177 at 192. 209 Re M, supra note 137 at 498. 210 Supra note 189 at 616. 207

211

Ibid

222

The Right to Bodily Integrity

1136

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

argument can be made for the medical monitoring of her pregnancy. It is arguable that T.'s deviance from this norm of maternal co-operation with doctors during the antenatal period, contributed to the court's decision to terminate her pregnancy and permit her sterilization. A final point to note is that the courts' willingness to account for the trauma associated with a non-consensual Caesarean section in these sterilization cases is not reproduced in the English case law concerning nonconsensual Caesarean sections.212 These discourses construct the bodies of the women concerned as inappropriate for reproduction on the basis that they would suffer as a result. Their bodies would suffer, in some cases, through the pregnancy, but in most, through the labour unless sedated or delivered surgically. The surgical delivery is constructed as a further form of assault on the suffering body of the labouring woman. In Re X. (Adult Sterilisation),213 the court notes that the anticipated Caesarean section "would be no less invasive than sterilisation itself."214 The suggestion is that an interventionist labour is itself an infringement of bodily integrity that the learning disabled woman should be spared in her own best interests. In contrast, the sterilization procedure referred to variously as "sterilisation by occluding the fallopian tubes" and a "simple operation for occlusion of the fallopian tubes,"215 was not conceived as traumatic for the body. It was "a relatively minor operation carrying a very small degree of risk to the patient, a very high degree of protection and minimal side effects."216 Lord Hailsham echoed this with the view that "apart from its probably irreversible nature, the detrimental effects are likely to be minimal."217 E. Parenting: The Gendered Body The third consideration examined by English courts in the determination of best interests is the woman's ability to parent a child. The courts' analyses typically include a consideration of whether the woman has the capacity to marry, whether it is likely that she will find a mate, and whether she could care for a child with that mate. It was held that the women in Re B.9 Re F.9 Re P., Re M, Re H.G9 and Re W. were all

212

See Re L (Patient: Non-consensual Treatment) (1996), [1997] 1 F.L.R. 837 (Fam. Div.); Re M.B., supra note 95; Norfolk and Norwich Healthcare (N.HSj Trust v. W, [1996] 2 F.L.R. 613 (Fam. Div.); Rochdale Healthcare (N.H.S.) Trust v. C, [1997] 1 F.C.R. 274; Sf George's Healthcare N.H.S. Trust v S., R v Collins, ex parte S., [1998] 3 All E.R. 673, 2 F.L.R. 728 (C.A.). For an extended analysis of these cases, see Kristin Savell, "The Mother of the Legal Person" in Stephanie Palmer & Susan James, eds., Visible Women: Essays on Feminist Legal Theory and Political Philosophy (Oxford: Hart, 2002) 29. 213 [1998] 2 F.L.R. 1124 (Fam. D.). 214 Ibid at 1127. 215 Re B. (H.L.), supra note 79 at 205, Bridge L. J. 216 Ibid, at 209, Oliver L.J. 217 Ibid at 203, Hailsham L.J.

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

223

1137

unfit to mother children and were subsequently sterilized in their best interests. There are two factors that make the judicial assessment of the social interests of the woman problematic. The first is that the claim "unfitness to parent" can reflect the problems that women might genuinely experience in a parenting role. But it can also reflect a belief that "mentally handicapped women" as a category cannot be good parents and/or that the community is burdened by their parenting either because their children are disadvantaged by their disabilities or because the support needed to assist them in parenting is costly. In this sense, the claim "unfitness to parent" can be regarded as concerning the individual and social body. It will be recalled that fitness to parent was cited as a basis for sterilization by the Brock Committee, which espoused the belief that "mental defectives" make "inefficient parents." In Re B.9 the evidence of the consultant child and adolescent psychiatrist was that there was "no prospect of her being capable of forming a longterm adult relationship, such as marriage, which is within the capacity of some less mentally handicapped persons."218 Lord Oliver noted that: She has displayed no maternal feelings and indeed has an antipathy to small children. Such skills as she has been able to develop are limited to those necessary for caring for herself as the simplest level and there is no prospect of her being capable of raising or caring for a child of her own. If she did give birth to a child it would be essential that it be taken from her for fostering or adoption although her attitude towards children is such that this would not cause her distress.219

The measurement of "maternal feelings" is surely a difficult one at best, especially given that many of the applications are in respect of young women. It does not seem unlikely that there are many women between the ages of seventeen and nineteen who show little or no "maternal instinct" and who would not make ideal parents. Nonetheless, it is not unreasonable to consider whether the presence of a child might disturb or cause distress to the woman concerned. At the same time, there will be learning disabled women who, with additional help, could raise children, and who may wish to do so. The issue in Re P. was that T. did show "maternal instinct", so much so that it was thought that removing the child would constitute an "emotional trauma of an extreme kind which should be avoided."220 The view of another expert was that "the removal of a child at birth or after a period of time when she had grown attached to it is likely to be as difficult for T as any other mother."221 It was thought that T. may have had the intellectual capacity to marry and, in the view of both psychiatric experts, could have married and founded

218

Ibid, at 208, Oliver L J. It is interesting to note, by contrast, that the sterilization decision went the other way in Re D. (supra note 137), where the evidence indicated that D. "was of intellectual capacity to marry and would in the future be able to make her own choice" (ibid). 219 n^ D /TJ T \ ,'L,'^ „* OAO

220 221

Supra note 177 at 192. Ibid, at 191.

224

The Right to Bodily Integrity

1138

McGiLL LAW JOURNAL/REVUE DE DROITDE McGiLL

[Vol. 49

a family if she had a competent partner to support her. In other words, what T. needed to enable her to care for children was extra help. But the preferred view was that T. had "no realistic prospect of... entering into a marriage of any meaningful kind."222 This stemmed from the belief that her marriage to a competent man was only a "theoretical possibility" because "such a man is singularly unlikely to show sustained interest in her."223 Thus, in the opinion of the expert whose evidence was ultimately accepted, "it would be indefensible to allow the faint possibility of a[n appropriate mate] entering her life to influence the decision."224 By implication, the decision to sterilize T. was influenced by the speculations of a group of psychiatrists as to whether any "competent" man would want to love and support her and start a family. The court only briefly considered whether T. might have been furnished with the needed assistance from other sources or people. T.'s mother said that she would be prepared to care for any child that T. might have, but that she would not tolerate the three of them living together. Her view was based on the belief T. would become difficult if her mother's attentions were divided between T. and a child.225 In any event, the court showed obvious preference for a family unit based on heterosexual marriage. The possibility that T. would ever find any such situation was too remote for a court to take into account. The question of whether non-consensual sterilization might nonetheless constitute an infringement of a person's right to found a family has received judicial consideration. In Re D.226 Heilbron J. thought that such a right existed at common law and, on that basis, refused to order the sterilization of D. The decision was cited with approval by the Lord Hailsham in Re B. (H.L.): We were invited to consider the decision of Heilbron J. in In Re D. ... when the judge rightly referred to the irreversible nature of such an operation and the deprivation, which it involves, of a basic human right, namely the right of a woman to reproduce.... I have no doubt whatsoever that that case was correctly decided...227

Lord Bridge also thought that Heilbron J. had "correctly described the right of a woman to reproduce as a basic human right,"228 and Lord Templeman referred to "the fundamental right of a girl to bear a child."229 Notwithstanding this, their Lordships thought that the right to reproduce was contingent upon the woman being able to value their right. Lord Bridge stated that: "[t]he sad fact in the instant case is that the mental and physical handicaps under which the ward suffers effectively render her

222

Ibid at 192. Ibid 224 Ibid 225 Ibid at 184. 226 Supra note 137. 227 Supra note 79 at 203, Hailsham LJ. 228 Ibid at 205, Bridge L.J. 229 Ibid at 206, Templeman L.J. 223

The Right to Bodily Integrity

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

2004]

225

1139

incapable of ever exercising that right or enjoying that privilege."230 The reasoning is perhaps even clearer in the judgment of Lord Hailsham who said that the "right is only such when reproduction is the result of informed choice of which this ward is incapable."231 In short, the common law right to found a family, as understood by the House of Lords, would appear to be contingent upon the court's assessment of an individual's ability to appreciate that right. In the result, the right to found a family posed no barrier to the lawfulness of non-consensual sterilization. It is interesting to note that English law appears to distinguish the sexuality and reproductive responsibility of learning disabled men and women. In Re A.232 an application for a declaration that it would be lawful to sterilize a mentally disabled adult man was denied. The evidence was that A. did not understand the connection between sexual intercourse and pregnancy, nor did he understand the purpose of the sterilization operation. He was, however, sexually active and fertile. A.'s mother was concerned about the possibility that he might father a child that he would not subsequently care for. Although A. was not capable of consenting to the procedure, he had expressed his opposition to it. The principal argument in support of the application concerned A.'s freedom of movement. It was argued that his "quality of life" "should not be unnecessarily cut down"233 by imposing restrictions on his ability to develop relationships of a sexual nature. At first instance, the court rejected the application: It will not protect him from being exploited or from a risk of sexually transmitted diseases.... It follows that because there are other risks involved in any sexual relationship that A may have with a young woman, the degree of vigilance and supervision is not likely significantly to decrease, whether he is or is not at home ... Thus I do not accept that the operation would add value to the quality of A's life to any significant extent... Faced with the alternative of an invasive operation not without risk, I do not regard the risks that would otherwise face A as warranting such a course, nor the advantages to A as sufficiently positive.234

The Court of Appeal affirmed this decision. Butler Sloss P. distinguished the case from the sterilization of learning disabled women on the basis that A. could not become pregnant. There were "obvious biological differences" between men and women. She remarked further that "there is no direct consequence for a man of sexual intercourse other than the possibility of sexually transmitted diseases."235 She also suspected that A.'s mother was motivated by the concern to protect vulnerable women from the consequences of an unintended pregnancy and possibly "the undesirability in

230

Ibid at 205.

231 Ibid 232

at 203. Supra note 96. 233 Ibid at 550. 234 7Z>*W.at551. 235 Ibid at 554.

226

The Right to Bodily Integrity 1140

McG ILL LAW JOURNAL/REVUE DEDROiTDEMcG ILL

[Vol. 49

the public interest of allowing a pregnancy or birth to occur." These were clearly identified as third party concerns: Those are understandable concerns in the wider context of society but are not relevant in themselves to the issue before this court. Social reasons for carrying out of non-therapeutic invasive surgery is not part of the present state of the law.236

Arguments that appeal to natural differences between the sexes can be especially difficult to critique precisely because they appear to rest on facts that are beyond social control. It is curious, however, that two key reasons commonly cited by English courts to justify female sterilization—liberty to claim sexual autonomy and unfitness to parent—appear to have little force in Re A. The liberty argument, which was so important in the leading cases, Re B. and Re F, did not persuade the court that sterilization was in A.'s best interests. It was thought that because A. was vulnerable to sexually transmitted diseases he would be closely supervised in any event. Perhaps more startlingly, A.'s unfitness to parent was regarded as a social reason for sterilization and therefore outside the ambit of the best interests test. Finally, the sterilization procedure was described as invasive, a description rarely applied in the cases concerning women.

Conclusion There is ample evidence that the social and legal meaning of compulsory sterilization remains contested today. For the Supreme Court of Canada, the practice is a violation. It is an intrusion into the body of the woman, it is a permanent deprivation of her capacity to have children, and it is, at least potentially, an infringement of her human and constitutional rights. The Court demanded a strict and compelling justification in order to sanction what it saw as a violative act, and it was unable to find any. Eve's body was sacred in the Blackstonian sense and the common law of Canada would not permit her body to be surgically altered in an effort to contain her sexuality. For the House of Lords, sterilization offers protection to learning disabled women. The intrusion into the body is minimal, the capacity to have children is of marginal importance to her, and her right to found a family cannot be valued by her in any event. The significant considerations, as far as the Law Lords were concerned, were the discomforts, traumas, and intrusions that the woman would experience if she were to become pregnant. From this perspective, maternity posed risks to the learning disabled woman far greater than the "simple occlusion of the Fallopian tubes". Thus, sterilization was given the meaning of an act done for her, rather than to her; an act of protection rather than violation.

236

Ibid at 553.

The Right to Bodily Integrity

2004]

K. SAVELL - STERILIZATION AND BODILY INTEGRITY

227

1141

At the heart of this legal disagreement lie competing constructions of body, sexuality, and community. Where the overriding concern is the question of how to contain the sexuality of a learning disabled person perceived as "out of control" or "vulnerable to seduction", sterilization is cast as a just and humane solution that will advance the welfare of the individual concerned. Legal and cultural discourses that understand the sexuality of learning disabled individuals within this frame of reference tend to be heavily influenced by medicalized notions of the body, especially as regards pregnancy and birth. In this sense, these discourses illustrate the "perpetual exchange" between juridical and normalizing discourses. They constitute a site of production for norms of maternal co-operation with medical professionals in the antenatal period and during labour. They are also laden with moral concerns about fitness to parent and single motherhood and, in this sense, instantiate a normative heterosexual family. Against this background, the legal right to bodily integrity, though proclaimed to be a fundamental right ascribed to all persons, has not prevented English courts from declaring non-consensual sterilization to be lawful, at least in relation to women. Within this discourse, there does not appear to be a conflict. It is arguable that the right to bodily integrity does not trouble the English courts precisely because sterilization is understood as protecting the bodily integrity and enhancing the freedom of the learning disabled woman. Conversely, where the overriding concern is the question of how to preserve the integrity of a law committed to the principle of equality, sterilization is thought to be a violation of the bodily integrity of the person. Legal and cultural discourses that attempt to understand the sexuality of learning disabled people against a background of legal and social discrimination tend to frame the dilemma in terms that emphasize the potential for creating an oppressive and overbearing body politic. These discourses engage less with the specific mechanisms of sexuality and they are skeptical about welfare-oriented claims. They focus instead on the legal right of every person to be free from non-consensual bodily interferences. Within these discourses, there is a direct conflict between compulsory sterilization and the right to bodily integrity such that the only way to resolve the dilemma is to dismiss the possibility that compulsory sterilization can be in an individuals' best interests. It may be that the Supreme Court of Canada's circumspection was justified. It was once thought that sterilizing people with mental disability was desirable because they made inefficient parents and, moreover, that sterilizing learning disabled people was desirable because their lives would be enriched by the absence of parenting responsibilities. There are clear echoes of these historical arguments in modern English law. These echoes may represent limits on law's capacity to better understand the sexuality of learning disabled men and women. In the absence of greater attempts at genuine understanding, however, courts can only speculate whether non-consensual sterilization will be beneficial or violative. Attempts to improve the lives of men and women by removing their fertility requires a sensitivity to the significance of the bodily incursion and the deprivation entailed. It also requires a sensitivity to our own assumptions about sexuality and disabled bodies and an openness to the possibility that negative assumptions about these may taint our reasoning.

This page intentionally left blank

Part III Altering Children's Bodies

This page intentionally left blank

[7] The Child's Right to Bodily Integrity ROBERT LUDBROOK* The right to bodily integrity is the most personal and arguably the most important of all human rights. It is the right to make decisions about what happens to one's own body, the right to say no to unwanted touching, the right not to be physically or sexually assaulted. This fundamental right has been stated and restated many times by the courts and judicial commentators. In 1765 Blackstone wrote: The law cannot draw the line between different degrees of violence, and therefore totally prohibits the first and lowest stage of it; every man's person being sacred, and no other having the right to meddle with it, in any the slightest manner.1

Two hundred and twenty years later an English appeal judge restated the principle: The fundamental principle, plain and incontestable, is that every person's body is inviolate ... any touching of another person, however slight, may amount to a "battery".2

The High Court of Australia in Marion's case3 recently reinforced the importance of this principle in Australian law. Brennan J made a connection between the common law principle of bodily integrity and the right to human dignity under international human rights instruments: Human dignity is a value common to [Australia's] municipal law and to international instruments relating to human rights. The law will protect equally the dignity of the hale and the hearty and the dignity of the weak and the lame; of the frail baby and the frail aged; of the intellectually able and the intellectually disabled.

This article considers the right of children to bodily integrity and examines whether there is justification for giving children lesser protection than is accorded to adults. It reviews three recent unreported Australian cases where the courts have considered children's rights to bodily integrity.

Lesser legal protection for children While stressing the universal nature of the right to bodily integrity and the law's refusal to draw lines between different degrees of violence, Blackstone was willing to make an exception in relation to parental punishment of children, allowing that "a parent may lawfully correct the child, being under age, in a reasonable manner: for this is for the benefit of his education". This principle of "reasonable chastisement" has become an established pan of the common law and is restated in more modern form in the current edition of Halsbury:

* 1 2 3

Director, National Children's and Youth Law Centre. Commentaries (17th edn 1830) vol 3 at 120. Collins v Wilcock [1984] 1 WLR 1172 at 1177 (CA) per Robert Goff LJ. Secretary, Department of Health and Community Services v JWB and SMB (1992) 175 CLR, 218, 266 (Marion's case).

232

The Right to Bodily Integrity 124 CURRENT ISSUES IN CRIMINAL JUSTICE

VOLUME 7 NUMBER 2

An act is not an assault if it is done in the course of lawful correction of a child by its parent or of a pupil by its teacher, provided that the correction is reasonable and moderate considering the age and health of the child and is administered with a proper instrument.4

The reasonable chastisement exception to the general law of assault provides a defence to any criminal charge or civil claim for assault. It applies throughout Australia either as pan of the common law or local statute law.5 In practical terms: • In each Australian State and Territory parents and carers have the right to smack children. They must use only reasonable force and the purpose must be to correct the child's behaviour. • In all Australian States and Territories teachers who strap or cane children as a punishment can successfully defend civil or criminal proceedings for assault if they have used no more than reasonable force. In South Australia, Victoria, Western Australia and Queensland corporal punishment is forbidden in government schools as a matter of educational policy, but a teacher who strapped or caned a student could still rely on the common law defence to a criminal charge or civil action for assault. • In Western Australia and Queensland employers have the power to use corporal punishment as a means of correcting apprentices. One hopes that this has fallen into disuse but the right still remains on the statute books. There are other situations in which the right of Australian children to bodily integrity is less recognised than that of adults: • Parents and permanent carers seemingly have the right to lock up their children for short periods as part of the normal disciplinary powers,8 although it is doubtful whether teachers or part-time carers (for example, baby sitters) enjoy an equivalent right.9 • It is sometimes asserted that teachers have the power to forcibly search students, although the extent and even the existence of such a right is debatable.10 • Parents can force minor medical treatments on their young children, even against the child's wishes, and can give consent on behalf of an unwilling child to medical or dental treatment. This power is subject to statutory restrictions in relation to older children

4 5

6 7 8 9 10

Laws of England (4th edn) vol 11 (1) at para 488. For a comprehensive review of Australian legislation, regulations and policies, see Legal and Social Aspects of the Physical Punishment of Children: a discussion paper (May 1995) at 3.3 commissioned by the Commonwealth Department of Human Services and Health under the auspices of the National Child Protection Council. Id at 3.4.4, 3.4.5. Western Australia Criminal Code s257; Queensland Criminal Code s280. Rv Rahman (1985) 81 Cr App Rep 349. Fitzgerald v Northcote (1865) 4 F & F656; Manse 11 v Griffin (1908) 1KB 160, Ryan v Fildes [1938] 3 All ER 517. See also Hunter v Johnson (1984) 13 QBD 225. This was previously believed to flow from an implied delegation of powers by parents to teachers but more recently is seen as an incident of the compulsory removal of children from their parents under education laws and the assumption by schools of obligations to ensure the care and safety of children: Ramsey v Larsen (1964) 111 CLR 16; see also Regina v JMG (1986) 58 OR (2d) 705 and discussion in Boer, B and Gleeson, V (eds), The Law of Education [724] and Trouc, K and Sleigh, D, Australian Teacher and the Low at 103.

The Right to Bodily Integrity NOVEMBER 1995

THE CHILD'S RIGHT TO BODILY INTEGRITY

233 125

and to the Gillickn principle that children who have sufficient intelligence and understanding can give or refuse consent.12 • The courts, relying on the principle that the State has an overriding interest in the welfare of children (the parens patriae principle) can authorise invasive medical treatment of children if it is deemed to be in the child's best interests (as in Marion's case where sterilisation of a 14-year-old child was ordered). • Children can in some States and Territories be compulsorily hospitalised not for health reasons but to obtain forensic evidence of abuse.

Community attitudes towards the bodily integrity of children In practice, people tend to make considerably more body contact with children than they would with adults. Physical closeness and overt displays of affection by parents, family members and other adults who are part of the child's community are an important part of childrearing. Babies and small children require assistance with many essential tasks such as feeding, bathing and dressing, and this involves handling and a degree of physical intimacy. Nurturing behaviour of this type is essential to the child's physical and emotional development and is to be encouraged. Even adults who are complete strangers to a small child often assume a right to clasp, squeeze, hug or pick up a child. It is presumed that such actions are motivated by friendliness and that children welcome such attention. Politicians believe they can win votes by being seen holding or kissing babies. Babies are also a popular subject for advertising and media messages. There seems to be a current fad for using naked babies as photographers' accessories: putting them in flowerpots, watering cans or draping them over pumpkins. Penelope Leach has written on "bodily indignities routinely imposed on older children" such as compulsory haircuts, public weighing and measuring or mass examinations for parasites.15

Special legal protections for children against physical or sexual assault To some extent the criminal law recognises that children require even greater protection from physical and sexual assault than adults. There are special protections for children in criminal law from physical or sexual assaults: these may be separate criminal offences or offences carrying heavier penalties if the victim is a child.16

11 12 13 14 15 16

Gillick's v West Norfolk and Wisbeach Area Health Authority [1986] 1 ACII 2 (GiHick's case). For a detailed discussion see National Children's and Youth Law Centre, My body, my decision: children's consent to medical treatment (1995). Above n3. For example, Community Welfare Act 1983 (NT) ssl5,16; Child Welfare Act 1947 (WA) s29(3a), Children First: What society must do and is not doing for children today (1994) at 233. Forexample, Crimes Act 1900 (NSW) ss42,66A,66B,66C,66D,78H,78I,78L78O,90,91.

234

The Right to Bodily Integrity 126 CURRENT ISSUES IN CRIMINAL JUSTICE

VOLUME 7 NUMBER 2

Justifications for denying children equal rights to bodily integrity There are several possible justifications for denying children's right to bodily integrity:

Dependency and welfare Children are dependent upon adult help for their survival and physical, social and emotional development. Some invasion of their bodily integrity is necessary in the child's best interests as part of childrearing. To quote Brennan J again: the baby whose dignity is respected by being carried and cared for by his or her parents grows into a man or a woman whose dignity would be affronted by such treatment.

This argument is a "welfare" argument based on the child's need for nurturing, protection and assistance. It would be universally accepted in respect of younger children.

Adult responsibilities Parents and other adults who have a responsibility for children should have the powers they need to carry out their responsibilities. This argument was considered in the House of Lords in the Giltick case.18 Lord Fraser emphasised that the parental rights to control a child do not exist for the benefit of the parents. They exist for the benefit of the child and they are justified only in so far as they enable the parent to perform his duties towards the child and towards other children in the family.19

When it comes to an invasion of the child's bodily integrity parents can rely on their parental powers only to the extent that they can show this is necessary in furtherance of parental responsibilities.

Family autonomy The State entrusts to parents and carers the difficult task of bringing up children and the State should not intervene in such a personal and sensitive area as child rearing. The view is often expressed that the State should not interfere with parents who bring up children in the manner they think best. While it is generally accepted that many of the societal rules about physical touching are relaxed within the family environment it is not questioned that the State should have the power to intervene in interfamilial relationships where one family member is subjected to physical violence or unwanted sexual touching. In the words of Brennan J in Marion's case: Limits on parental authority are imposed by the operation of the general law, by statutory limitations or by the independence which children are entitled to assert... as they mature. Within these limits, the parents' responsibilities and powers may be exercised for what they see as the welfare of the child.20

Adults know best Children need to be firmly guided and controlled and adults entrusted with their care or their education should have the necessary powers to enforce compliance with their commands. This is in reality a statement that parents, teachers and other authority figures acquire the right to infringe the bodily integrity of children by reason of parenthood or by virtue of 17 18 19 20

Above n3 at 266. Above nil. Id at 278. Above n3 at 278.

The Right to Bodily Integrity NOVEMBER 1995

235

THE CHILD'S RIGHT TO BODILY INTEGRITY 127

their office. It has been described by Penelope Leach as "benevolent authoritarianism".21 The argument views children as possessions and not, as the Convention on the Rights of the Child declares, as "equal and inalienable members of the human family".

Children are children Children are immature and impulsive and the normal boundaries in relation to their bodily integrity need to be relaxed. This is an argument that children are different from adults and should be treated differently. While children do differ from adults in many ways, this should not be a justification for taking away their right to make choices about their own bodies. While it is obvious that many children like to engage in adventurous, exploratory and robust physical activities and that they may need special care and protection, this should not be a licence for adults to assume that any touching will be welcomed by the child and is acceptable.

United Nations Convention on the Rights of the Child The United Nations Convention on the Rights of the Child was ratified by the Australian government in November 1990 and came into effect from 1 February 1991. It sets out fundamental principles of human rights that apply to children and young people under the age of 18 years. It achieves a careful balance between the rights of children and the rights of their parents. The Convention has now been ratified by more than 170 countries worldwide and signed by eight others.22 It is estimated that nearly 99 per cent of the world's children live in countries which have made a commitment to the principles of the Convention. While the child's right to bodily integrity is not a right specifically referred to in the Convention it can be derived from a reading of the Convention as a whole: Article 18.1 recognises that parents have responsibilities for the upbringing and development of their child and adds that "[t]he best interests of the child will be their basic concern." Article 19.1 requires governments to "take all appropriate measures to protect the child from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation including sexual abuse, while in the care of their parents, legal guardian(s) or any other person who has the care of the child". The wording of this Article places significant restrictions on family autonomy when questions arise as to the child's need for protection. Article 28.2 deals with punishment in schools. It requires governments to "take all appropriate measures to ensure that school discipline is administered in a manner consistent with the child's human rights and dignity and in conformity with the ... Convention". Article 19 probably applies to teachers as well as parents and carers, since it is settled law that teachers owe a duty of care to their students. Article 29.1(d) speaks of the purpose of education being to prepare children for a responsible life in a free society, in a spirit of understanding, peace and tolerance. Article 37(a) places an obligation on governments to protect children from any "cruel, inhuman or degrading treatment or punishment".

21 22

Above n!5. As at 15 March 1995. See International Children's Rights Monitor vol 11 no 4 and vol 12 no 1 at 55.

236

The Right to Bodily Integrity 128 CURRENT ISSUES IN CRIMINAL JUSTICE

VOLUME 7 NUMBER 2

The UN Committee on the Rights of the Child, which receives and comments on the Reports filed by parties to the Convention, recognises Articles 19, 29 and 37 of the Convention as granting children a right to physical integrity. The Committee has made a clear statement that any form of corporal punishment is in breach of the Convention.23

Implications of the right given to adults to smack or hit children The question is often asked, "What harm can a parental smack do to a child?" The occasional light smack is not likely to cause permanent damage to a child but the questions that need to be answered are "Why is it acceptable to assault a child when it is not acceptable to assault an adult?" or "Why are children the only group in society to be denied the right to their bodily autonomy and integrity?" There are important messages to society in the legal rules which allow the reasonable chastisement of children: • Children can expect less protection from violence than adults. • Adults can use force if necessary to enforce their demands on children in their care. • Children's bodies are not "off limits" to adults. • There are differing legal and social standards as to the protection of children under child protection laws, education law and the criminal law. • The boundaries between physical punishment and child abuse are blurred with parents and teachers receiving discrepant messages such as, "You can hit children if they are naughty and if they are very naughty you can hit them hard but you must not hit them too hard because that is child abuse."

Corporal punishment and family law and laws restraining domestic violence Every State and Territory now has laws which allow a family member to seek legal protection from another family member.24 Most of these allow children to seek protection from adults. Proposed changes to the Family Law Act require judges deciding disputes about children to consider any family violence involving the child or a member of the child's family.25 As Sally Castell-McGregor has pointed out: There is something deeply hypocritical about a society which on the one hand waxes eloquent about the harmful effects of domestic violence and the need to "change attitudes" while on the other it upholds a common law right to hit one section of the community only — children.26

23 24 25 26

Concluding Observations on Report by Canada CRC/C/15/Add.37 (20 June 1995) at para 25; Concluding Observations on Report by United Kingdom CRC/C/15/Add34 (January 1995) at 6. For a summary see Seddon, N, Domestic Violence in Australia (2nd edn, 1993). Letter from Hon Peter Duncan, 27 September 1995. Comment in relation to a father charged with hitting his son with a cricket stump who was released without penalty with the magistrate remarking that the father had gone "a little over the top". Noted in (Aug/Sept 1992) 12 Interesting: Newsletter of the Children's Bureau.

The Right to Bodily Integrity NOVEMBER 1995

237

THE CHILD'S RIGHT TO BODILY INTEGRITY 129

Reasonable chastisement and child abuse There is conflicting opinion and research evidence on whether physical punishment is child abuse or whether it leads to child abuse. This evidence is fully discussed in a recent discussion paper Legal and Social Aspects of the Physical Punishment of Children?1 It is necessary to heed Blackstone's warning given 260 years ago that "the law cannot draw the line between different degrees of violence." Once the laws permit physical violence, decisions have to be made as to where within the continuum of violence the limits are to be fixed. If the purpose of reasonable chastisement is to correct the child's behaviour, then it must be assumed that the intention is to cause the child physical pain. But how much pain is reasonable? And if mild chastisement does not correct the child's behaviour is the infliction of greater pain justified? The reported cases28 (and the three recent Australian unreported cases analysed below) show that there are significant differences of opinion in the community and among the judiciary about when physical punishment is appropriate and how much pain is reasonable. The law is an important symbol and if the law allows parents, carers and teachers to hit and hurt children, it is sending a message to these people and to the community generally that children are not entitled to the same right to bodily integrity as adults.

Recent Australian decisions Because each case is seen to turn on its own particular facts, many decisions relating to physical punishment of children are not reported in official law reports even when they are taken on appeal. Three unreported cases decided during the last decade give some indications of the attitude of the Australian judiciary to physical punishment of children.

Case 1: Higgs v Booth (WA) 198629 A foster mother hit a two-year-old child with her hand. She also hit a three-year-old girl causing severe bruising to her buttocks and lower back which was clearly visible three or four days later. The magistrate held that the punishment was reasonable and proper. On appeal the judge held that physical punishment was not warranted in respect of any twoyear-old and that the punishment meted out to the older girl was unreasonable. Comment What the magistrate found to be acceptable was seen by the judge to be unwarranted and unreasonable. Many people would consider the use of an implement causing severe bruising to a three-year-old to be child abuse. Others would, no doubt, view this as normal parental discipline. One criticism of the current state of the law is the uncertainty concerning what is reasonable chastisement and the lack of any clear boundary between reasonable punishment and physical abuse. While the test of reasonableness gives the courts a wide discretion it provides little guidance for parents and teachers. Judicial officers have to make a value judgment on an issue on which there is a lack of community consensus. Their decisions will be influenced by their own personal beliefs and experiences and outcomes will often be difficult to predict. A result of this uncertainty may be that the police

27 28 29

Above n5 at 5.5.4. Id at 33. Western Australia Supreme Court A315/316/86,29 August 1986.

238

The Right to Bodily Integrity 130 CURRENT ISSUES IN CRIMINAL JUSTICE

VOLUME 7 NUMBER 2

and child protection authorities will be reluctant to take action in cases which they believe the bounds of reasonable chastisement have been exceeded.

Case 2: Ruse v Thew (NSW) 1995™ A male nurse at a residential centre for disabled children was charged with assaulting or ill-treating an 11-year-old developmentally disabled and autistic child who had motor skills but no speech skills. Another worker had called out after the 11-year-old was seen shoving a female child and putting her hand inside his pants. The accused worker yanked the disabled boy's ear, yanked and pulled him aggressively by the ear seven to 10 metres across the grounds of the centre. The management plan for the child stated, "Do not attempt to physically restrain/' and there was evidence that, because of his disability he did not understand appropriate social behaviour. The magistrate considered that the worker's actions were inappropriate but were not sufficiently serious to amount to ill-treatment. He viewed the incident as being "trivial, insubstantial or a mere lack of nicety". He dismissed the charges as not establishing a prima facie case against the worker. The Supreme Court Judge upheld this view. On the assault charge the Supreme Court considered that there had been a technical assault but supported the magistrate's view that the worker had not gone beyond generally acceptable standards of conduct. Comment Both at first instance and on appeal it has been held that to drag an 11-year-old disabled child for some considerable distance by his ear is acceptable practice and does not amount to ill-treatment. The case was dismissed not because of the reasonable chastisement defence but on the grounds that the physical dragging of the child by the ear was trivial and did not go beyond generally acceptable standards of conduct. The fact that the child suffered a disability and that the nurse had a duty of care towards the child and was breaching the centre's management guidelines and plan for the child seemed to carry little weight with the court.

Case 3: Horan v Ferguson (Qld) 199431 A magistrate found a male teacher guilty of nine charges of assault on seven primary schoolgirls aged between 10 and 13. The teacher admitted patting the children on the buttocks to encourage them to move in a desired direction. There was evidence of one occasion when a girl went up to the teacher's desk in the classroom, and the teacher, intending to put his arm round the student, put his hand under her skirt. He stated that this was accidental and that he had apologised to the girl and immediately taken his hand away. Several other students said that the teacher had squeezed them on their thighs or their buttocks and another claimed that he had rubbed her shoulder. Three judges in the Supreme Court allowed an appeal and directed that the teacher be acquitted on all charges. They considered that the statutory right of teachers to use force by way of correction was wide enough to permit teachers to make bodily contact with students to guide them in a particular direction. One judge was of the view that there is every reason to accept the concept that a child attending school tacitly consents to receiving from a teacher tactile expressions of encouragement. The traditional pat on the shoulder for a significant achievement falls within this concept. To deny this concept would

30 31

New South Wales Supreme Court 12822/23/94 27 July 1995. Queensland Supreme Court CA 85/94,23 September 1995.

The Right to Bodily Integrity NOVEMBER 1995

239

THE CHILD'S RIGHT TO BODILY INTEGRITY 131

be to insist that schools become sterile, unemotional and devoid of normal expressions of friendly human interaction.

Comment Unlike the earlier cases, the issue here was not one of physical punishment but of a pattern of physical touching (claimed to be no more than friendly gestures) which was not welcomed by the students. The judges were willing to extend the reasonable chastisement principle to include physical touching which was not intended as a punishment. In this case, as the first case, there was a difference of opinion between the magistrate (who had seen the young women and heard them give evidence) on the one hand and the three Supreme Court judges on the other as to the extent of the students' right to bodily integrity. The appeal decision suggests that it can be implied from children's attendance at school that they consent to a certain amount of physical touching: The simple activity of going [to school] where inevitably one may be touched is sufficient to invite a degree of unavoidable physical contact, however unwelcome it may be for some people.

This comment fails to draw a distinction between accidental touching (inevitable in a crowded playground) and deliberate touching as was alleged in this case.

Conclusion Australian law recognises a person's right to bodily integrity as a fundamental right, and there have been significant developments recently (particularly in family law and laws dealing with domestic violence) aimed at restricting and restraining the use of physical violence within families and communities. It is anomalous that we still cling to the common law notion, developed more than 300 years ago, that physical chastisement involving the deliberate infliction of pain is acceptable if the person being punished is a child and the use of force is intended to correct the child's behaviour. While there may be differing views about the correctness of the three recent decisions considered above several points emerge. In all three cases, the children were held to have lesser rights to bodily integrity than adults would have had in equivalent circumstances. Imagine if, in the first case, it was an adult woman who had been hit with a stick so fiercely that bruises were visible three or four days later. If the victim in the second case had been an adult male with an intellectual disability would the court have dismissed the incident on the basis that it was within acceptable standards of conduct? And if, rather than adolescent schoolgirls, seven grown women had been touched around the buttocks by an older male (as in the third case) would the incidents have been dismissed as "tactile expressions of encouragement"? An important point that emerges from consideration of the three cases is that it is not just in the area of "reasonable chastisement" that the courts are willing to apply lesser standards for children than would apply to adults. The second and third cases were decided under general law and the "reasonable chastisement" defence seems not to have been specifically raised. In the first case, the magistrate viewed the punishment as "reasonable and moderate" but the judge found there was "inadequate justification for physical force of any kind". In the second case, the charge against the nurse was dismissed on the basis that no prima facie case had been established and so the court did not have to consider whether or not the physical assault was "reasonable chastisement". In the third case, the touching was claimed to be benevolent, not punitive, and reasonable chastisement was not an issue.

240

The Right to Bodily Integrity

132 CURRENT ISSUES IN CRIMINAL JUSTICE

VOLUME 7 NUMBER 2

In these three cases Australian courts have had to consider a child's right to bodily integrity. Courts must, of course, apply the law. But in two of the three cases considered there was a serious division of judicial opinion as to the interpretation of the law and the acceptability or otherwise of the alleged infringement of the children's bodily integrity. In this area of the law the personal values and beliefs of the decision-maker are likely to be influential in the ultimate decision. If Australia is serious about the protection of children it cannot continue to operate according to double standards. Penelope Leach has made the point that "public opinion and the laws draw protective circles around punishing adults rather than around punished children."32 Current laws are unfair to parents and teachers who are being given mixed messages about hitting children and to child protection workers and the courts who have the task of fixing and enforcing the limits of acceptable violence towards children. More importantly, they are unfair to children whose right to bodily integrity is compromised.

32

Above n!5 at 215.

[8] Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision Michael Benatar, Harvard University U.S.A.

David Benatar, University of Cape Town, South Africa

Opinion about neonatal male circumcision is deeply divided. Some take it to be a prophylactic measure with unequivocal and significant health benefits, while others consider it a form of child abuse. We argue against both these polar views. In doing so, we discuss whether circumcision constitutes bodily mutilation, whether the absence of the child's informed consent makes it wrong, the nature and strength of the evidence regarding medical harms and benefits, and what moral weight cultural considerations have. We conclude that nontherapeutic circumcision of infant boys is a suitable matter for parental discretion. Introduction Routine neonatal male circumcision has been the subject of considerable debate among medical professionals. This subject, however, has received negligible attention in the bioethics literature. This suggests that most scholars working in bioethics do not consider neonatal male circumcision, unlike the practices of female genital excision that are common in parts of Africa and elsewhere, to be a morally troubling surgical procedure.1 This attitude toward neonatal male circumcision seems to be shared by many people, even in societies where male circumcision is performed infrequently. That is to say, relatively few people think that the practice is morally unacceptable, even if they themselves would not have their sons circumcised. But some people do consider routine circumcision of children (who are too young to consent) to be morally wrong or at least morally suspect. They take circumcision to be a severely injurious practice. For many of them any routine alteration of infant genitalia is a form a child abuse. By contrast, the advocates of routine neonatal circumcision believe that there are significant health advantages to circumcision and that these unequivocally override the costs and risks, which they believe are negligible. Although these are polar views, they are not infrequently expressed. We believe that both views are mistaken, and we shall argue to this effect. Circumcision, the removal of the foreskin, can

be performed at any age and for a variety of reasons. However, we shall focus primarily on circumcision of minors for nontherapeutic purposes. An adult's decision to undergo circumcision is uncontroversial. Even the most ardent opponents of circumcision have no opposition to an autonomous adult's choosing to be circumcised.2 Similarly uncontroversial is therapeutic (rather than allegedly prophylactic) circumcision. As most nontherapeutic circumcision is performed in the neonatal period, it is circumcision in this period that will be our primary focus, although much of our discussion will also be relevant to the circumcision of older children. Most of those writing on the topic say that they would like parents to be able to make an informed decision about whether to have their sons circumcised. However, it is extremely difficult for those who have not immersed themselves in the literature on this topic to be able to make an informed judgment. This is, in part, because of the vastly differing interpretations of the evidence offered by different reviewers. The issues are further clouded by the use of emotive language by a number of authors, especially among those opposed to circumcision.3 We cannot hope to review everything that

2. Opposition to circumcision of even a consenting adult is a conceivable view, but it is not one we have heard expressed. 3. One pair of authors, in speaking about proponents of circumcision remarked: "We sincerely hope that they are more 1. There are some exceptions. See, for example, Somerville interested in preventing penile cancer than in perpetrating 1999. unethical, destructive, mutilative, antisexual, Bronze Age

242

The Right to Bodily Integrity 36

The American Journal of Bioethics

has been written on the topic. Nor can we comment on the methodology and quality of every study. We shall certainly not be offering new empirical evidence. What we do plan to do, however, is to clarify some conceptual issues, something that is often neglected in the debate about circumcision. We shall also offer what we hope is a balanced outline of the evidence before suggesting how it might reasonably be interpreted. Mutilation Those who believe that circumcision of minors is morally prohibited often suggest that removing the foreskin constitutes mutilation of a child. For instance, Denniston, Hodges, and Milos (1999) note that Stedman's Medical Dictionary defines mutilation as "[disfigurement or injury by removal or destruction of any conspicuous or essential part of the body." Male circumcision, they say, is the injurious and appearance-altering removal of a conspicuous body part and thus unquestionably constitutes mutilation. But this sort of argument begs the question. It assumes that circumcision disfigures and injures. Yet this is exactly what is in dispute in debates about whether circumcision constitutes mutilation. This can be seen if we consider other surgical procedures such as breast reduction, liposuction, and rhinoplasty. These are all procedures that alter the appearance of parts of a person. Those who request such procedures do not take them to be disfiguring. Similarly, those who circumcise their sons do not take removal of the foreskin to be disfiguring. Even if people can be mistaken about what constitutes disfigurement, it is still true that one cannot assume that a surgical procedure is disfiguring simply because it alters the body. It may be enhancing or it may be (aesthetically) neutral—neither disfiguring nor enhancing. Of course, even nondisfiguring surgical procedures can be injurious. Again, however, not every surgical procedure, even one that removes healthy tissue, can be assumed to be injurious. That a surgical procedure is harmful is something that must be demonstrated rather than merely asserted. It is also possible for a disfiguring surgical procedure, all things considered, to be beneficial rather than injurious. For instance, amputating a blood rituals on defenceless children" (Fleiss and Hodges 1996). Others referred to an infant's response to circumcision as "screams of agony and protest" (Denniston 1999, 223; emphasis added).

gangrenous leg is considered by most people to be disfiguring. Such people could term it a mutilation. However, if amputation were the only way to save a person's life, it would usually be beneficial. Where a mutilation is, all things considered, a benefit, it can be morally justifiable. Thus, even if circumcision is a mutilation, it does not inevitably follow that it is morally unacceptable. Further argument would be required to establish that conclusion. Although nobody would suggest that circumcision can save a life as directly as can amputation of a gangrenous leg, it is also the case that circumcision, if a disfigurement at all, is a much less radical disfigurement than a limb amputation. The benefit it would have to produce in order to be justified would thus need to be much smaller. In short, then, whether circumcision is a mutilation and, if it is, whether it is an unacceptable mutilation can be established only by argument and not by mere assumption. Potential harms and benefits must be examined and weighed against one another. This stands in contrast to the view of some opponents of circumcision who, though they believe circumcision to be harmful, say that they would still be opposed to circumcision even if it were not (Denniston 1999). They take the mere removal of healthy tissue from a child to be sufficient grounds for condemning all nontherapeutic circumcision of boys (Denniston 1999). But the ethics of a surgical procedure cannot be assessed independently of whatever harms and benefits it does or does not have. To think that a moral judgment can be made without considering these is to adopt what sounds like a dogma rather than a reasoned conclusion. Informed Consent One reason why some opponents of circumcision think that circumcision can be condemned without considering what harms or benefits it might have is that they think appropriate consent cannot be obtained. Children, they correctly note, lack the capacity to consent to circumcision. It is usually parents who provide consent for the circumcision of their children. However, those opposed to any nontherapeutic circumcision of minors claim that parents are entitled to consent to surgical procedures for their children only when medical necessity is immediate and clear (Denniston 1999; Van Howe 1997). Accordingly, they regard circumcision of children to be a form of assault—which is what surgery amounts to when appropriate consent

243

The Right to Bodily Integrity Between Prophylaxis and Child Abuse

or exceptional circumstances (such as necessity) are absent. But is it really true that parents are morally entitled to authorize medical interventions only for clear and immediate medical necessity? In parts of the world where diseases against which children are often vaccinated are now uncommon, the necessity of such vaccination for any individual child is neither clear4 nor immediate. Moreover, there are very small but real risks (including death) from vaccination. A child's informed consent for such vaccination cannot be obtained. The choice (where government allows a choice rather than simply requiring universal inoculation) can thus either be deferred to proxy decision makers such as the parents or left to the adult that the child will become. But delaying vaccination can undermine much of its benefit. It thus seems entirely reasonable that parents or other guardians of a child's best interests be morally entitled to decide for the child. The role of a parent is not simply to save children from immediate catastrophe, but is to protect and foster a child's long-term best interests. That is why most people think that parents may consent on behalf of their children not only to vaccination but also to such procedures as orthodontics and various nonmedical interventions, including schooling. There are limits, of course, on the sorts of things to which parents can consent on behalf of their children. Typically the things to which parents may not consent are those that are unequivocally harmful to their children. Perhaps those opposed to circumcision believe that it is just such a procedure. That, however, is a much stronger claim than the claim that circumcision is not a clear and immediate medical necessity, and it is accordingly much harder to defend. Nor can it be argued that nothing is lost by delaying a choice about circumcision of one's child until he can make it himself. This is because there are costs to delaying circumcision until adulthood. At the very least, circumcision may be psychologically unpleasant in adults in a way that it is not in infants. Moreover, the risks are greater in adults. Finally, although, as we shall show, the evidence for beneficial effects of circumcision is controversial, insofar as there are these benefits, they are significantly reduced if the circumcision is performed later in life. 4. When an infectious disease is uncommon in a particular population, the individual benefits from widespread vaccination that results in herd immunity. It is not clear, however, that the individual benefits from his or her own vaccination in the context of herd immunity.

37

Alleged Costs and Benefits Having established that a moral assessment of neonatal circumcision cannot be made without considering whatever costs and benefits it may have, we turn now to the empirical evidence about these matters. We shall examine each issue individually to determine whether there is a cost or a benefit and, if so, its magnitude. After we have considered each of these issues, we shall attempt to draw an overall conclusion about the net medical value of neonatal circumcision. Pain

A compelling objection to neonatal circumcision is that it has usually been practised without any anesthesia.5 It is now well known that neonates are capable of feeling pain,6 and it is widely accepted that neonatal circumcision is a painful procedure. This recognition has led to a search for suitable analgesia. Among the techniques that have been employed are topical analgesia with EMLA cream, dorsal penile nerve block, and ring block. In randomized controlled trials, the topical cream has been shown to be effective in reducing the pain response (Benini et al. 1993) but not as effective as the two nerve block techniques (Lander et al. 1997.)7 The high efficacy of dorsal penile nerve block has been repeatedly demonstrated in neonates (Kirya and Werthmann 1978; Williamson and Williamson 1983; Stang et al. 1988; Spencer et al. 1992; Arnett, Jones, and Horger 1990). Studies in adults have shown that either ring block or dorsal penile nerve block combined with anesthesia of the frenulum are more often effective than dorsal penile nerve block alone (Szmuk et al. 1994). The limited use of regional anesthesia is attributable to misperceptions that the procedure is 5. A sucrose nipple and, in Jewish ritual circumcision, a few drops of wine, have been used, but these do not constitute proper analgesia. 6. Anand and Rickey's (1987) paper has been widely cited, including by numerous other studies that have investigated the question of neonatal (and late fetal) pain. That neonates can feel pain is accepted by almost everybody. Derbyshire (1999) is an isolated dissenter. We have demonstrated (Benatar 2001) how he misrepresents the scientific consensus, employs a confused and narrow interpretation of the concept of pain, and reaches a conclusion that is not supported by the available evidence. In his attempt to respond to our paper (Derbyshire 2001), he does not engage our criticisms and simply repeats his earlier errors (this time with invective). 7. Lander et al. (1997) found that the ring block was more effective than the dorsal penile nerve block.

244

The Right to Bodily Integrity 38

The American Journal of Bioethics

difficult to perform, that it carries significant risks and that it causes more pain than the circumcision itself. In fact, the analgesia can be administered with ease. Although minor complications such as limited bruising have commonly been observed, these healed spontaneously (Poma 1980; Williamson and Williamson 1983; Stang et al. 1988; Snellman and Stang 1995; Lander et al. 1997), and complications of any clinical significance are rare (Sara and Lowry 1985). Finally, the administration of the injections themselves has not been found to elicit a pain response (Kirya and Werthmann 1978; Williamson and Williamson 1983; Stang et al. 1988). Even if adequate analgesia is provided for the procedure itself, concern might be raised about post-operative pain. We are not aware of any studies on such pain and its control in neonates. There seems to be no reason, however, why simple topical or systemic analgesics should not suffice. Therefore, concerns about post-operative pain cannot constitute strong grounds against performing the procedure. Complications

As with any surgical procedure, circumcision carries a risk of complications, including most commonly bleeding and sepsis. Studies that have looked at large numbers of children who were circumcised have reported varying rates of complications from 0.06% (Speert 1953) to 55% (Patel 1966). This apparent discrepancy is attributable to the definition of complication that is employed. Those studies that report high complication rates have included even minor post-procedure oozing of blood from the wound. That interpretation, however, is unreasonably broad and is inconsistent with what would constitute a complication in any other surgical procedure. The consensus, even among those reporting high complication rates, is that the incidence of clinically significant complications is very low. It is commonly thought to be around 0.19% to 1.5% (Gee and Ansell 1976; Wiswell and Geschke 1989; Fredman 1969). It is also agreed that even where there are complications, the majority of these either resolve spontaneously or are easily resolved by simple medical intervention. There are, of course, instances of more severe complications, as described in some case reports. These can include denuded penile shaft, laceration or necrosis of the glans, urethral fistula, and death. However, these are very uncommon. The risk of death, for example, is less than 1 per 500,000 (Speert 1953).

Penile Cancer

It has often been claimed that circumcision is protective against penile cancer. A simplistic approach to this issue is to compare the incidence of the disease in societies where circumcision is widely practiced with its incidence in societies where only a minority of males are circumcised. Both advocates and opponents of neonatal circumcision have adopted this approach in (partial) support of their respective views. Opponents of circumcision, for instance, have noted that the incidence of penile cancer in the United States, where the vast majority of males are circumcised, is higher (0.9-1.0 per 100,000 males) than in Denmark (0.82 per 100,000 males) where circumcision is extremely uncommon (Denniston 1999).8 By contrast, proponents of routine circumcision cite the extremely low incidence of penile cancer in Israel (0.1 per 100,000 males), where circumcision is even more prevalent than in the United States (Schoen et al. 2000). This is an indirect approach to the issue. It 1. determines the incidence of a disease in two populations; 2. notes the prevalence of circumcision in these populations; and then 3. makes an inference about the relationship between the disease and circumcision status. It is indirect because it does not actually determine whether patients with the disease are circumcised. There are studies that have adopted a more direct approach. They have examined patients with penile cancer and established what proportion of them are circumcised. These include studies of penile cancer in New York (120 cases; Dean 1935), Illinois (139 cases; Lenowitz and Graham 1946), New York (100 cases; Hardner et al. 1972), and Michigan (156 cases; Dagher, Selzer, and Lapides 1973). None of these 515 patients were neonatally circumcised. One concern with these studies is that the investigators did not control for possible confounding variables, which might include smoking, sexual behavior, socioeconomic status, and/or sexually transmitted diseases. Nevertheless, the overwhelming nature of the results suggests that they cannot therefore be dismissed. More recent studies have attempted to control for potential confounding factors. For instance, a study of 110 penile can8. Not everybody accepts these statistics. A recent paper cites data that puts the incidence of penile cancer in the United States at 0.6 per 100,000 males and in Denmark at 1 per 100,000 (Schoen et al. 2000, e39).

245

The Right to Bodily Integrity Between Prophylaxis and Child Abuse

cer patients (and 355 controls) in Washington state and the province of British Columbia found that, although other factors might also increase the risk of penile cancer, not being circumcised neonatally carried a 3.2-times greater risk for the development of this disease (Maden et al. 1993). Other recent studies have been even more refined, not only controlling for potentially confounding variables but also distinguishing between various forms of (squamous cell) penile cancer. The results of studies that make this distinction suggest that circumcision is protective against the more but not less severe forms of this disease. The spectrum of diseases that can be included under this rubric ranges, in increasing order of severity, from penile intraepithelial neoplasia (PIN) to carcinoma in situ (CIS) to invasive penile carcinoma (IPC). A study published in 1993 from the Mayo Clinic in Minnesota of 34 patients with penile cancer found that although low-grade PIN occurred in the 12 neonatally circumcised men, all the cases of CIS and IPC occurred in men who were not circumcised in infancy (Malek et al. 1993). In an even more recent study of 213 penile cancer patients in California, in which the circumcision status was known in 207 of them, 84.3% of the CIS and 97.7% of the IPC patients were not neonatally circumcised (Schoen et al. 2000). None of these studies can be regarded as ideal or definitive. Among some of their potential shortcomings are their retrospective nature, small sample size, and use of self-report as a means of determining circumcision status.9 Nevertheless, the preponderance of evidence suggests that neonatal circumcision is protective against (or at least associated with a lower incidence of) the more severe forms of penile cancer.10 Given that it is the more severe forms of this disease that entail greater morbidity and mortality, preventing these is of greater benefit. We are not claiming that penile cancer, or even its more severe forms, does not occur in men who were neonatally circumcised. Nor do we wish to enter into the (distracting) protracted debate about exactly how many cases (or case reports) of penile cancer there have been in U.S. men circumcised in infancy. Some proponents of circumcision have claimed that there have been only ten such case re9. There is conflicting evidence about whether self-report is a reliable way of determining circumcision status. Some studies (e.g., Urassa et al. 1997) suggest it is not, while others (Parker et al. 1983) suggest it is. 10. Circumcision beyond infancy has not been as well studied but seems not to confer the same magnitude of benefit.

39

ports within the last 55 years (Schoen 1991; Schoen 1996; Schoen et al. 2000). Opponents of circumcision have criticized this claim at great length (Denniston 1999), citing a few additional case reports and noting that not every case will have been reported in the medical literature. While there might be technical validity to at least some of these criticisms, they fail to get to the heart of the issue. It is inadequate to cite a few case reports in response to the numerous sizable case series that have shown that the overwhelming majority of cases of invasive penile cancer occur in men who were not circumcised in infancy.11 Urinary Tract Infection

The relationship between urinary tract infection (UTI) and circumcision has been the subject of many studies, and the consensus in the medical literature is that circumcision is associated with a lower incidence of UTI (Ginsberg and McCracken 1982; Wiswell, Smith, and Bass 1985; Wiswell and Roscelli 1986; Wiswell et al. 1987; Herzog 1989; Wiswell and Hachey 1993; To et al. 1998). We are aware of no studies that have shown either the reverse or no association. Lower incidence of UTI is one of the benefits most commonly cited in support of circumcision (American Academy of Pediatrics Task Force on Circumcision 1989; Schoen 1990; Ganiats et al. 1991; Lawler, Bisonni, and Holtgrave 1991; Niku, Stock, and Kaplan 1995; Moses, Bailey, and Ronald, 1998; Schoen, Wiswell, and Moses, 2000).12 That said, it must be emphasised, however, that studies do disagree about the magnitude of the increased risk of UTI among uncircumcised boys. Some studies have reported a 3.7-fold (To et al. 1998) increased risk of UTI in uncircumcised compared with circumcised children. Others have suggested as much as a 12-fold increase (Wiswell and Hachey 1993).13 11. Opponents of circumcision typically do not distinguish between the different forms of the disease, and when they do, they do not provide primary data to show that the more severe forms occur in equal or greater degrees in those who are neonatally circumcised. 12. Even those papers that conclude that, all things considered, the costs and benefits of circumcision cancel out one another take the prevention of UTI to be a beneficial feature of circumcision. See, for example, Fetus and Newborn Committee, Canadian Paediatric Society (1996); American Academy of Pediatrics Task Force on Circumcision (1999); and American Academy of Pediatrics (2001). 13. This is the conclusion of their meta-analysis of nine published studies. Individual studies estimated the increase from 5- to 89-fold.

246

The Right to Bodily Integrity 40

The American Journal of Bioethics

There have been criticisms of the methodology of these studies. These include the retrospective nature of most of the studies, the inclusion of primarily only hospitalized patients, and the failure to control adequately for confounding variables (such as socioeconomic factors). All these are legitimate concerns and do show ways in which the studies have not been ideal. However, it is not reasonable, for these reasons, to completely disregard these data. First, one cannot ignore that, despite the varying limitations of the numerous studies, all have pointed in the same direction. Second, not all available medical evidence conforms to the highest standards, and it is necessary to base practice on the available evidence, which, although defective, is not so thoroughly flawed as to be entirely useless. Medical evidence does vary in its quality, and if one were to reject all evidence that was less than ideal, one would be left with no basis for decision making in many areas of medical practice, not to mention everyday life. Having established an increased risk of UTI among uncircumcised boys, the significance of this risk needs to be assessed. Here, some advocates of circumcision have tended to overrate the value of circumcision. Any fair assessment of its significance must consider the following: While it is true that circumcision confers a 10-fold risk reduction of UTI, the absolute incidence of UTI is low, with 0.15% of circumcised and 1.5% of uncircumcised male infants developing such an infection. Put another way, UTI does not occur in 99.85% of circumcised infant males and in 98.5% of uncircumcised infant boys. Moreover, most UTIs occur in the first year of life and are easily diagnosed and treatable, with low morbidity and mortality. More serious complications of UTI, such as vesicouretic reflux, renal scarring, pyelonephritis, and renal failure are possible but occur with low frequency (Littlewood 1972).14 In summary, then, circumcision does seem to confer a small but real benefit in terms of UTI prevention. Sexually Transmitted Diseases

Circumcision has also been claimed to be protective against some sexually transmitted diseases (STDs), including human immunodeficiency virus (HIV). Although the evidence for this claim is not 14. This study points to the occurrence of severe complications but overestimates their frequency because it includes a number of cases that were inadequately treated or not treated with antibiotics at all.

unproblematic, the data on HIV is more consistent than that on other STDs. Furthermore, given the availability of a number of systematic reviews, as well as a recent meta-analysis on HIV and circumcision status, the data on HIV is easier to assess. For this reason, we shall discuss HIV and non-HIV STDs separately. We shall consider the latter first. STDs Other than HIV

Genital ulcer disease (GUD) is one category of STD. Of the five studies that looked at syphilis, four reported reduced risk in those who are circumcised (Wilson 1947; Parker et al. 1983; Newell et al. 1993; Cook, Koutski, and Holmes 1994), and one reported no difference (Lauman, Masi, and Zuckerman 1997). Herpes was investigated in six studies. Three concluded that circumcised men have a reduced risk (Parker and Banatvala 1967; Taylor and Rodin 1975; Parker et al. 1983), and three found no difference (Cook, Koutski, and Holmes 1994; Donovan, Bassett, and Bodsworth 1994; Lauman, Masi, and Zuckerman 1997). One study of chancroid (Haemophilus ducreyi) found that circumcised men were less susceptible (Simonsen et al. 1988). Two studies examined genital ulcer disease without specifying the infecting organism, and both found reduced risk in circumcised men (Cameron et al. 1989; Nasio et al. 1996). Consider next the studies that examined urethritis. Of these, gonorrhea was the subject of investigation in seven studies. Three concluded that circumcised men were at less risk (Wilson 1947; Parker et al. 1983; Cook, Koutski, and Holmes 1994), and four found no significant difference (Taylor and Rodin 1975; Smith, Greenup, and Takafuji 1987; Donovan, Bassett, and Bodsworth 1994; Laumann, Masi and, Zukerman 1997). Six studies considered non-gonococcal urethritis. Two found circumcised men to be at increased risk (Smith, Greenup, and Takafuji 1987; Newell et al. 1993), and four found no significant difference (Parker et al. 1983; Cook, Koutski, Holmes 1994; Donovan, Bassett, and Bodwsworth 1994; Laumann, Masi, and Zuckerman 1997). Four of the studies investigated genital warts. Two found circumcised men to be at increased risk (Cook, Koutsky, and Homes 1993; 1994), and two found no difference in the risk faced by circumcised and uncircumcised men (Parker et al. 1983; Donovan, Bassett, and Bodsworth 1994). Van Howe, a well-known opponent of circumcision, judges on the basis of this and other data, that "no solid epidemiological evidence has been

247

The Right to Bodily Integrity Between Prophylaxis and Child Abuse

found to support the theory that circumcision prevents STDs." In his view the "only consistent trend is that uncircumcised males may be more susceptible to GUD, while circumcised men are more prone to urethritis" (Van Howe 1999b, p. 59). Over the years, the American Academy of Pediatrics has issued a number of position statements about neonatal circumcision. The most recent of these, which was published in 1999 (American Academy of Pediatrics Task Force on Circumcision 1999), had very little to say about STDs. They concluded that "circumcised males may be less at risk for syphilis than are uncircumcised males (p. 691)." Others have been more enthusiastic about the protection circumcision affords against STDs. Schoen, a well-known defender of routine neonatal circumcision, and his colleagues, state that "{s]trong evidence . . . links lack of male circumcision to increased risk for genital ulcer disease, particularly chancroid and syphilis" (Schoen, Wiswell, and Moses 2000, p. 621). Moses, Bailey, and Ronald (1998), in reviewing a host of studies, claim that "there is good concordance for an association between lack of circumcision with chancroid, syphilis, genital herpes, and gonorrhea. Only for urethritis other than gonorrhea and genital warts is the evidence for an effect of circumcision inconclusive (p. 370)."

Evaluating the claim that circumcision is associated with a lower incidence of HIV infection15 is greatly facilitated by a number of systematic reviews as well as a meta-analysis. Moses and colleagues reviewed 30 studies (Moses et al. 1994). Twenty-two of these (including two prospective studies) found a statistically significant association between lack of circumcision and HIV infection. (The magnitude of the increased risk for the uncircumcised ranged from 1.5 to 8.4.) Four studies in the review found a trend toward an association, and four studies found no association. More recently, Weiss, Quigley, and Hayes (2000) performed a meta-analysis of 28 published studies that evaluated the risk factors for susceptibility to HIV-1 infection in men in sub-Saharan Africa. In 21 studies circumcision was associated with a reduced risk of HIV infection, the difference being statistically significant in 14. A higher risk of HIV infection in circumised men was observed 15. We refer here to susceptibility to HIV infection rather than to infectivity.

41

in six studies (four from a single area), but none reached statistical significance. Overall, circumcision was associated with a highly significant reduction in the risk of HIV infection (RR = 0.52). Significant heterogeneity was observed between the studies, indicating that the magnitude of the protective effect varied in different populations, with the association between circumcision and susceptibility to HIV infection being strongest in high-risk patients. Van Howe (1999a) reviewed and analysed 33 studies. He concluded that circumcision is associated with an increased risk of acquiring and transmitting HIV. However, Moses, Nagelkerke, and Blanchard (1999) have raised some powerful objections to this study. They have pointed to and explained the methodological flaw of combining raw data for reanalysis, as Van Howe does. That this analysis is flawed stands to reason when one compares the results of the individual studies cited by Van Howe with the conclusions he reaches via his analysis. Of the 33 studies he examined, 16 showed an association between lack of circumcision and increased risk of HIV infection, 4 suggested a trend toward this association, 12 demonstrated no association, and only 1 showed an increased risk of HIV among circumcised men. O'Farrell and Egger (2000) have pointed to the same methodological flaws in Van Howes analysis. Moreover, they have reanalysed the studies he reviewed, and, in contrast to him, they concluded that lack of circumcision is associated with an increased risk of HIV infection. They note that this relationship is only present in groups at high risk for HIV infection. Reliability of the Primary Data

Numerous objections have been raised against the primary studies on the relationship between circumcision status and sexually transmitted diseases. One problem is that of publication bias—that there is a tendency not to submit or to publish studies that suggest no effect. This is a genuine concern, not only with regard to this issue, but with the whole enterprise of scientific publication. Nevertheless, one is only able to base judgments on available evidence. Other, more important problems, are those of selection bias (how individuals are identified for inclusion in the study), the method of ascertaining circumcision status, the type of study (whether prospective, retrospective, etc.), and the degree to which confounding variables are controlled. While individual studies may be subject to criticism on some or other of these

248

The Right to Bodily Integrity 42

The American Journal of Bioethics

grounds, it is also the case that many primary studies have avoided these pitfalls to varying extents and nonetheless found circumcision associated with lower risk of STDs, including HIV. The review by Moses and his colleagues (Moses et al. 1994), for example, included two populationbased studies as well as two prospective studies. On the issue of determining a subject's circumcision status, Weiss, Quigley, and Hayes (2000) excluded from their analysis those primary studies that used a proxy (such as religion) for circumcision, and many studies have used doctor examination rather than self-report (e.g., Parker et al. 1983; Smith, Greenum, and Takafuji 1987; Cook, Koutsky, and Holmes 1994; Nasio et al. 1996; Tyndal et al. 1996). Many studies controlled for confounding variables. Bailey, Neema, and Othieno (1999) found that even controlling for differences in sexual practices and hygienic behavior, circumcised men were at lower risk. In their meta-analysis, Weiss, Quigley, and Hayes (2000) noted that some adjustment for confounding factors was reported in 15 of 21 studies regarding HIV. Among the factors controlled for were age, ethnic group, marital status, area of residence, sexual behavior, and condom use. Although the controlling for confounding variables is much better in the HIV studies, there are some studies on nonHIV STDs that controlled for confounding variables, such as age, ethnicity, marital status, and number of sexual partners (e.g., Cook, Koutsky, and Holmes 1994). What the above shows, we believe, is that the evidence is stronger and of a better quality for HIV (particularly in high-risk hetereosexual groups) than for other STDs, and that it is stronger for some non-HIV STDs than for others. Although none of the evidence is anywhere near conclusive, it also cannot be ignored. The criticisms of the studies that have been done, although having a certain force, are insufficient to discard those studies and their findings. Other Considerations

important in itself, but it would be somewhat significant if uncircumcised men, either in the absence of or contrary to any attempts at education about genital hygiene, tended not to exert that extra effort. Unfortunately, there is simply little data, and that uncompelling, on the basis of which any judgment about this matter can be made (0ster 1968; Herzog and Alvarez 1986; Krueger and Osborn 1986; Fergusson, Lawton, and Shannon 1988). Circumcision has also been said to protect against phimosis16 and paraphimosis.17 Although these conditions can occur only in those who are uncircumcised (or incompletely circumcised), their incidence is very low.18 Thus circumcision, where it is not incompletely done, does prevent these conditions in the small proportion of men who would otherwise have acquired either of them. It has also been claimed that balanitis19 is more common in the uncircumcised. Nevertheless, the incidence remains low (Herzog and Alavarez 1986). Meatitis20 and meatal ulceration occur more often in the circumcised (Mackenzie 1966). There are only a few studies that bear on these issues, and those that do are old. Thus caution is required in the conclusions one draws from this data. There have been some suggestions that there is a lower incidence of cervical cancer in the female partners of circumcised men. However, there is widespread agreement that there is inadequate data to make such a claim (Niku, Stock, and Kaplan 1995; Moses, Bailey, and Ronald 1998). Finally, conflicting claims have been made about the relationship between circumcision and sexual pleasure in the man and his female partner. On the one hand, it has been argued that circumcised men experience less sexual pleasure. This has been explained by the keratinization of the exposed glans and the loss of the highly erogenous preputial tissue. However, what little evidence there is on this matter suggests that the circumcised glans is no less sensitive (Masters and Johnson 1966). Moreover, removal of erogenous tissue does not necessarily entail diminished sexual pleasure if

There are a number of other issues that are raised in debates about the medical value or risks of circumcision. For instance, circumcision has been claimed to facilitate genital hygiene. This claim is false under some interpretations and true under others. It is not the case that maintaining genital hygiene is very difficult for an uncircumcised man. However, it is the case that it takes slightly more effort than for a circumcised man. That slight difference is not

16. Acquired inability to retract the foreskin. 17. Inability of the retracted foreskin to return to its resting position covering the glans. 18. See for example, Her/og and Alvarez (1986). Some studies have appropriately cautioned against the overdiagnosis of phimosis, given that it is developmentally normal for the foreskin to be unretractable in young children. 19. Inflammation of the glans. 20. Inflammation of the meatus.

249

The Right to Bodily Integrity Between Prophylaxis and Child Abuse

sufficient erogenous tissue remains. Others have argued that sexual dysfunction is less common in circumcised men (Laumann, Masi, and Zuckerman 1997) and that the circumcised status is preferred by female partners. Sexual preferences for the circumcised or uncircumcised state will depend on many variables, including culture. It thus seems ill-advised to draw general conclusions from the few studies there have been. Weighing Up Costs and Benefits It should be clear from our surveying of the available evidence about circumcision that the practice has both costs and benefits. The most significant cost of neonatal circumcision is the pain that accompanies it. Performing this procedure without adequate analgesia, as is usually the case, is of great moral concern. Given that safe and effective local anesthesia for neonatal circumcision is possible, there is no excuse for failing to use it. Where it is used, this major cost can be eliminated or at least significantly reduced. While circumcision can involve complications, these are mostly minor. Clinically significant negative sequelae are extremely rare. The available evidence suggests that circumcision is protective against the more severe forms of penile cancer and has a small but real effect in reducing the incidence of urinary tract infections. Circumcision is also associated with a lower risk of genital ulcer disease but a slightly increased risk of urethritis. At least in high-risk heterosexual groups, circumcision also seems to lower susceptibility to HIV infection. This would suggest that the potential benefits of neonatal circumcision slightly outweigh the costs, although this is not obviously so. There are a few reasons for being cautious about judging that the balance tips in favor of circumcision. First, the data is incomplete. For instance, the true incidence of serious complications is unknown. Second, not every potential cost and benefit will be equally relevant in every circumstance. For instance, in communities where the incidence of penile cancer and sexually transmitted diseases is very low, the expected benefits of circumcision will be far fewer than in societies in which these conditions are more prevalent. Finally, an overall assessment of the medical costs and benefits of circumcision cannot be made independent of personal value judgments. For example, different people will make different judgments regarding whether reducing the small risk of penile cancer is worth the remote risk of a serious complication from circumcision.

43

For these reasons, we think that neonatal circumcision cannot unequivocally be said to yield a net medical gain or loss. In other words, it is not something that can be said to be routinely indicated, nor something that is routinely contra-indicated. It is a discretionary matter. The decision whether or not to circumcise a child should thus be made by the parents, who, within certain limits, are entitled to employ their own value judgments in furtherance of their child's best interests. These limits are not exceeded in most decisions about neonatal circumcision, given the nature of the medical evidence. Culture Prior to the last century it was not medical but rather cultural and religious reasons for which circumcision was most often performed. Circumcision continues to be practiced for such reasons by many people. Cultural practices do not have trumping moral weight. That is to say, simply because a practice is culturally valued does not mean that it is morally acceptable. Sometimes a culture treats people in such harmful ways that these people's rights are violated. The practices of widow burning and foot binding are examples. Were it the case that male circumcision unequivocally inflicted as serious harms as do these practices, then its cultural value would be morally overridden. However, the available medical evidence does not support this conclusion and thus such a consideration cannot outweigh the powerful cultural value that circumcision has for many people. Two papers that performed a formal cost-benefit analysis of neonatal male circumcision also reached the conclusion, given the nature of the medical evidence, that cultural and religious considerations should determine whether circumcision is performed (Lawler, Bisonni, and Holtgrave 1991; Ganiats et al. 1991). This is not to say that people should accept their cultural practices uncritically, even if the weight of evidence does not speak against them. It is all too easy (and common) to privilege those cultural ways to which one is accustomed on account of their familiarity. There is value in stepping back from one's cultural assumptions. When one views male circumcision from another cultural perspective, one can only wonder what possessed ancient people to first think of removing the foreskin. Considered independently, it is about as strange as deciding to remove a part of the earlobe from all children.

250

The Right to Bodily Integrity The American Journal of Bioethics

This is just the view many people have of clitoridectomy, for example. Of course, in addition to being strange (at least to those outside of the cultures where it is practiced), is also very harmful. It is this harm that separates female genital excision from male circumcision. Nevertheless, the inability of many people to step back from their cultural unfamiliarity with genital alterations of young girls is reflected in discussions about how Western societies should relate to female genital excision either in their countries of origin or where immigrants wish to bring the practice to their new Western homes. In such discussions the usual line of argument is that the practice should be entirely eliminated rather than modified to make it less harmful and more akin to male circumcision. More specifically, it is suggested that it would be an unacceptable strategy to encourage a less damaging form of genital surgery as a way of accommodating cultural ways while minimizing their harmfulness. Excision of the clitoral prepuce is anatomically neither more nor less radical a procedure than removal of the penile foreskin.21 Yet, many of those who would not think twice about circumcising a boy would balk at permitting even the partial removal of a young girl's prepuce. Some might explain their antipathy only to the latter by arguing that the removal of female genital tissue is historically rooted in misogynistic ideas, because the expressed aim of female genital cutting is often to curb female sexuality. This, the opponents of the practice might say, oppresses women. Thus the fitting response is not to refine the practice but to abolish it. But this explanation reflects the very cultural bias to which we have referred, because it is far from clear that there is an asymmetry between the removal of analogous bits of male and female genital tissue. Consider the following three possibilities: 1. If removing the preputial tissue curbs sexuality of both sexes and if, on the basis of curbing female sexuality, the removal of the female prepuce is misogynistic, then the removal of the male foreskin should be viewed as misandristic. 2. If removing preputial tissue curbs sexuality but male circumcision is not misandristic because it also affirms the male in the eyes of the community, then female circumcision, which also 21. At least this is what our discussions with pediatric urologists and gynecologists with interests in this topic suggest.

affirms females in their communities, is not misogynistic. 3. Finally, if removing preputial tissue does not curb sexuality in either sex, then the basis for saying that the removal of the clitoral prepuce is misogynistic is eliminated. The culturally blinded person fails to see that just as female circumcision has been judged, both by its supporters and its opponents, to curb female sexuality, so has male circumcision been said, again by both its supporters and detractors, to curb male sexuality (Maimonides 1956; Gollaher 2000). And they fail to see that just as male circumcision is seen (often simultaneously) as an affirmation of the male, so female circumcision is seen (often simultaneously) as an affirmation of the female. While the removal of clitoris and labia is indeed clearly unlike the removal of the male foreskin, the same cannot be said of the removal of analogous tissues. There are other differences, of course, between the removal of male and female preputial tissue. For instance, although there is some evidence about the medical value of male circumcision there is none about a comparable benefit in females. There are two possible explanations for this: 1. the female procedure has no medical benefits; or 2. there might be such benefits but the matter has not received any scientific attention (yet). However, we suspect that the opposition to excising the clitoral prepuce is based not so much on the absence of medical evidence for a benefit, as on an abhorrence for removing genital tissue from a girl.22 This suggests an asymmetrical judgment about the intrinsic acceptability of removing preputial tissue. This asymmetry can be addressed either by extending the rejection of genital alteration to male circumcision or by withdrawing it 22. One example is the defeat of what has been termed the "Seattle Compromise." The Harborview Medical Center in Seattle was faced with repeated requests from immigrant Somalian mothers to have their daughters circumcised. The mothers indicated that their daughters would be circumcised with or without the doctors. The hospital suggested a compromise procedure whereby the clitoral prepuce would merely be nicked to draw blood. Evidently this would have satisfied at least some of the mothers. However, even though no tissue would have been removed in this proposed procedure, the plan was squashed by those who oppose any nontherapeutk procedure on a girl's genitalia. Those children who would have had the compromise procedure but who were instead subjected to the traditional one were clearly less well off then they would otherwise have been. See Coleman (1998).

251

The Right to Bodily Integrity Between Prophylaxis and Child Abuse

from the comparable procedure in females. Until symmetrical judgments are made about comparable procedures, we have every reason to believe that our cultural assumptions are blinding us one way or the other. We are not endorsing or condemning cultural views in favor of or against (nonharmful) circumcision. We are suggesting that there are cultural biases and that comparable practices (if they really are comparable) should be weighted equally. We are also suggesting that cultural views can themselves be subject to scrutiny and evaluation, and one way this can be done is by reflecting on analogous practices in other cultures to determine whether one's cultural views are consistent. The Burden of Proof It may be objected that our argument for the moral acceptability of circumcision rests on a mistaken presumption about when elective surgery is permissible.23 More specifically, it might be said that it is not the mere absence of harm that renders surgery permissible but also the presence of clear and significant net benefit. In other words, it might be argued, it is not sufficient to show that a surgical intervention will not be harmful. There must, in addition, be a demonstrable benefit. However, if we are correct that no clear and significant medical benefits derive from circumcision, there might still be other kinds of benefits.24 Thus the crucial question is whether the relevant presumption should be that 1. surgery is impermissible unless it offers clear and significant net medical benefit; or 2. surgery is impermissible unless it offers clear and significant net (medical or nonmedical) benefit. Those who would opt for the first presumption would have to explain why it is that medical benefits are the only relevant ones. It is not as though medical benefits are necessarily or always more important. Some medical benefits are minor and some nonmedical benefits are of great importance. There seems no reason to privilege the one kind of benefit over the other simply because the 23. The use of the term surgery is not intended to exclude what are ostensibly surgical procedures but which are performed by nondoctors (such as ritual circumcisers). 24. The distinction between medical and nonmedical benefits is not as sharp as many people might think, but we ignore this problem here.

45

one is a medical benefit. Nor is it clear why medicine should be used to secure only some kinds of benefits. If education, for example, may be used for medical or cultural benefit and if engineering may be used for social benefit, why may medicine not be used (within appropriate limits) for cultural or other human benefit? Obviously, much more can be said about this issue. However, resolving this issue would take us well beyond a focus on circumcision to a host of other less or uncontested practices, which space constraints prevent. Conclusion We have examined both conceptual issues and empirical evidence pertaining to neonatal circumcision of boys. Our conclusion is that circumcision is neither a compelling prophylactic measure nor a form of child abuse. For this reason, nontherapeutic circumcision of infant boys is a suitable matter for parental discretion. In exercising that discretion, religious and cultural factors, though preferably subject to critical evaluation, may reasonably play a role. That our conclusion occupies the popular middle ground between those who condemn the practice outright and those who think it should be routinely performed does not provide grounds for accepting it. The middle way is sometimes the wrong way. In the circumcision debate, however, the evidence and arguments support neither of the extremes. • References American Academy of Pediatrics. 2001. Circumcision: Information for parents. Available from: http://www.aap. org/family/circ.htm. (Accessed 2 Jan. 2001) American Academy of Pediatrics Task Force on Circumcision. 1989. Report of the task force on circumcision. Pediatrics 84:388-91. . 1999. Circumcision policy statement. Pediatrics 103(3):686-93. Anand, K. J. S.; and P. R. Mickey. 1987. Pain and its effects in the human neonate and fetus. New England Journal of Medicine 317(21):1321-29. Arnett, R. M., S. Jones, and E. 0. Horger III. 1990. Effectiveness of 1% lidocaine dorsal penile nerve block in infant circumcision. American Journal of Obstetrics and Gynecology 163(3): 1074-80. Bailey, R. C., S. Neema, and R. Othieno. 1999. Sexual behaviors and other HIV risk factors in circumcised and uncircumcised men in Uganda. Journal of Acquired Immune Deficiency Syndromes 22(3):294-301. Benatar, D., and M. Benatar. 2001. A Pain in the fetus: To-

252

The Right to Bodily Integrity 46

The American Journal of Bioethics

ward ending confusion about fetal pain. Bioethics 15(1): 57-76.

Kaplan. 1991. Routine neonatal circumcision: a cost-utility analysis. Medical Decision Making 11(4):282-89.

Benini, R, C. Johnston, D. Faucher, and J. V. Aranda. 1993. Topical anesthesia during circumcision in newborn infants. JAMA 270(7): 850-53.

Gee, W. F., and J. S. Ansell. 1976. Neonatal circumcision: a ten-year overview: With comparison of the Gomco clamp and Plastibell device. Pediatrics 58(6):824-27.

Cameron, D. W., J. N. Simonsen, L J. D'Costa et al. 1989. Female to male transmission of human immunodeficiency virus type 1: Risk factors for seroconversion in men. Lancet ii:403-407.

Ginsberg, C. M., and G. H. McCracken Jr. 1982. Urinary tract infections in young infants. Pediatrics 69:409-11.

Coleman, D. L 1998. The Seattle compromise: Multicultural sensitivity and Americanization. Duke Law Journal 47:717-83. Cook, L. S., L. A. Koutsky, and K. K. Holmes. 1993. Clinical presentation of genital warts among circumcised and uncircumcised heterosexual men attending an urban STD clinic. Genitourinary Medicine 69:262-64.

Gollaher, D. 2000. Circumcision. New York: Basic Books. Hardner, G. J., T. Bhanalaph, G. R Murphy, D. J. Albert, and R. H. Moore. 1972. Carcinoma of the penis: Analysis of therapy in 100 consecutive patients. Journal of Urology 108:428-30. Herzog, L. W. 1989. Urinary tract infections and circumcision. American Journal of Diseases of Children 143:34850.

. 1994. Circumcision and sexually transmitted diseases. American Journal of Public Health 84:197-201.

Herzog, L. W., and S. R. Alvarez. 1986. The frequency of foreskin problems in uncircumcised children. American Journal of Diseases of Children 140:254-56.

Dagher, R., M. L. Selzer, and J. Lapides. 1973. Carcinoma of the penis and the anti-circumcision crusade. Journal of Urology 110:79-80.

Kirya, C., and M. W. Werthmann. 1978. Neonatal circumcision and penile dorsal nerve block—A painless procedure. The Journal of Pediatrics 92(6):998-1000.

Dean, A. L. 1935. Epithelioma of the penis. Journal of Urology 33:252-83.

Krueger, H., and L. Osborn. 1986. Effects of hygiene among the uncircumcised. The Journal of Family Practice 22(4):353-55.

Denniston, G. C. 1999. Tyranny of the victims: An analysis of circumcision advocacy. In Male and female circumcision: Medical legal and ethical considerations in pediatric practice, ed. G. C. Denniston, F. M. Hodges, and M. F. Milos, 223-24. New York: Kluwer. Denniston, G. C., F. M. Hodges, and M. F. Milos. 1999. Preface. In Male and female circumcision: Medical legal and ethical considerations in pediatric practice, ed. G. C. Denniston, F. M. Hodges, and M. F. Milos, i-vii. New York: Kluwer. Derbyshire, S. 1999. Locating the beginnings of pain. B/oef/7/cs13(1):1-31. . 2001. Fetal pain: An infantile debate. Bioethics 15(1):77-84. Donovan, B., I. Bassett, and N. J. Bodsworth. 1994. Male circumcision and common sexually transmissible diseases in a developed nation setting. Genitourinary Medicine 70:317-20.

Lander, J., B. Brady-Fryer, J. B. Metcalfe, S. Nazarali, and S. Muttitt. 1997. Comparison of ring block, dorsal penile nerve block, and topical anesthesia for neonatal circumcision. JAMA 278(2^:2^57-62. Laumann, E.O., C. M. Masi, and E. W. Zuckerman. 1997. Circumcision in the United States: Prevalence, prophylactic effects and sexual practice. JAMA 277(13): 1052-1057. Lawler, F. H., R. S. Bisonni, and D. R. Holtgrave. 1991. Circumcision: A decision analysis of its medical value. Family Medicine 23(8):587-93. Lenowitz, H., and A. P. Graham. 1946. Carcinoma of the penis. Journal of Urology56:458-84. Littlewood, J. M. 1972. 66 infants with urinary tract infection in first month of life. Archives of Disease in Childhood 47:218-26. Mackenzie, A. R. 1966. Meatal ulceration following neonatal circumcision. Obstetrics and Gynecology 28(2):221-3.

Fergusson, D. M., J. M. Lawton, and F. T. Shannon. 1988. Neonatal circumcision and penile problems: An eight year longitudinal study. Pediatrics 81:537-41.

Maden, C., K. J. Sherman, A. M. Beckmann et al. 1993. History of circumcision, medical conditions and sexual activity and risk of penile cancer. Journal of the National Cancer Institute 85:19-24.

Fetus and Newborn Committee, Canadian Paediatric Society. 1996. Neonatal circumcision revisited. Canadian Medical Association Journal 154:371-72.

Maimonides, M. 1956. The guide for the perplexed, 2nd ed, trans. M. Friedlander. New York: Dover Publications.

Fleiss, P. M., and F. Hodges. 1996. Neonatal circumcision and penile cancer—Authors' reply. British Medical Journal313:47.

Malek, R. S., J. R. Goellner, T. F. Smith, M. J. Espy, and M. R. Cupp. 1993. Human papillomavirus infection and intraepithelial, in situ, and invasive carcinoma of penis. Urology 42:159-70.

Fredman, R. M. 1969. Neonatal circumcision: a general practitioner survey. Medical Journal of Australia 1:117-20.

Masters, W. H., and V. E. Johnson. 1966. Human Sexual Response. Boston: Little Brown & Company.

Ganiats, T. G., J. B. C. Humphrey, H. L. Taras, and R. M.

Moses, S., R. C. Bailey, and A. R. Ronald. 1998. Male cir-

253

The Right to Bodily Integrity Between Prophylaxis and Child Abuse cumcision: Assessment of health benefits and risk. Sexually Transmitted Infections 74:368-373. Moses, S., N. J. D. Nagelkerke, and J. Blanchard. 1999. Analysis of the scientific literature on male circumcision and the risk for HIV infection. International Journal of STD and AIDS 10:626-28. Moses, S., F. Plummer, J. E. Bradley et al. 1994. The association between lack of male circumcision and risk for HIV infection: A review of the epidemiological data. Sexually Transmitted Diseases 21(4):201-10. Nasio, J. M., N. J. D. Nagelkerke, A. Mwatha et al. 1996. Genital ulcer disease among STD clinic attenders in Nairobi: Association with HIV-1 and circumcision status. International Journal of STD and AIDS 7:410-14. Newell J., K. Senkoro, F. Mosha et al. 1993. A populationbased study of syphilis and sexually transmitted disease syndromes in north-western Tanzania. 2. Risk factors and health seeking behaviour. Genitourinary Medicine 69:42126. Niku, S. D., J. A. Stock, and G. W. Kaplan. 1995. Neonatal circumcision. Urologic Clinics of North America 22(1 ):5765. O'Farrell, N., and M. Egger. 2000. Circumcision in men and the prevention of HIV infection: A 'meta-analysis' revisited. International Journal of STD and AIDS 11(3): 13742. 0ster, J. 1968. Further fate of the foreskin: incidence of preputial adhesions, phimosis and smegma among Danish schoolboys. Archives of Diseases of Children 43:200203. Parker, J. D. J., and J. E. Banatvala. 1967. Herpes genitalis: Clinical and virological studies. British Journal of Venereal D/sease43:212-16. Parker, S. W., A. J. Stewart, M. N. Wren, M. M. Gollow, and J. A. Y. Straton. 1983. Circumcision and sexually transmittable disease. The Medical Journal of Australia 2:288-90. Patel, H. 1966. The problem of routine circumcision. Canadian Medical Association Journal 95:576-81. Poma, P. A. 1980. Painless neonatal circumcision. International Journal of Gynaecology and Obstetrics 18:308-9. Sara, C. A., and C. J. Lowry. 1985. A complication of circumcision and dorsal block of the penis. Anaesthesia and Intensive Care 13(1):79-82. Schoen, E. J. 1990. The status of circumcision of newborns. New England Journal of Medicine 322:1308-1311. . 1991.The relationship between circumcision and cancer of the penis. CAA Cancer Journal for Physicians 41(5):306-309.

47

Schoen, E. J., T. E. Wiswell, and S. Moses. 2000. New policy on circumcision—Cause for concern. Pediatrics 105(3): 620-23. Simonsen, J. N., W. Cameron, M. N. Gakinya et al. 1988. Human immunodeficiency virus infection among men with sexually transmitted diseases: Experience from a center in Africa. New England Journal of Medicine 319(5): 274-78. Smith, G. L, R. Greenup, and E. Takafuji. 1987. Circumcision as a risk factor for urethritis in racial groups. American Journal of Public Health 77(4):452-54. Snellman, L. W., and H. J. Stang. 1995. Prospective evaluation of complications of dorsal penile nerve block for neonatal circumcision. Pediatrics 95(5):705-708. Somerville, M. A. 1999. Respect in the context of infant male circumcision: Can ethics and law provide insights? In Male and female circumcision: Medical legal and ethical considerations in pediatric practice, ed. G. C. Denniston, F. M. Hodges, and M. F. Milos, 413-24. New York: Kluwer. Speert, H. 1953. Circumcision of the newborn: An appraisal of its present status. Obstetrics and Gynecology 2(2): 164-71. Spencer, D. M., K. A. Miller, M. O'Quinn et al. 1992. Dorsal penile nerve block in neonatal circumcision: Chloroprocaine versus lidocaine. American Journal of Perinatology 9(3):214-18. Stang, H. J., M. R. Gunnar, L. Snellman, L. M. Condon, and R. Kestenbaum. 1988. Local anesthesia for neonatal circumcision: Effects on distress and cortisol response. JAMA 259(10): 1507-11. Szmuk, P., T. Ezri, H. Ben Hur et al. 1994. Regional anaesthesia for circumcision in adults: A comparative study. Canadian Journal of Anaesthesia 41:1181-84. Taylor, P. K., and P. Rodin. 1975. Herpes genitalis and circumcision. British Journal of Venereal Disease 51:274277. To, T., M. Aghar, P. T. Dick, and W. Feldman. 1998. Cohort study on circumcision of newborn boys and subsequent risk of urinary tract infection. Lancet 352:1813-16. Tyndall, M. W., A. R. Ronald, E. Agoki et al. 1996. Increased risk of infection with human immunodeficiency virus type 1 among uncircumcised men presenting with genital ulcer disease in Kenya. Clinical Infectious Diseases 23:449-53. Urassa, M., J. Todd, J. T. Boerma, R. Hayes, and R. Isingo. 1997. Male circumcision and susceptibility to HIV infection among men in Tanzania. AIDS 11(1):73-80.

. 1996. Neonatal circumcision and penile cancer. British Medical Journal 313:46.

Van Howe, R. S. 1997. Response to "Determinants of Decision Making for Circumcision" by C. Ciesielski-Carlucci, N. Milliken, and N. H. Cohen (CQ, Vol. 5, No. 2). Cambridge Quarterly of Healthcare Ethics 6:88-89.

Schoen, E. J., M. Oehrli, C. J. Colby, and G. Machin. 2000. The highly protective effect of newborn circumcision against invasive penile cancer. Pediatrics 105(3):e36-e39.

. 1999a. Circumcision and HIV infection: review of the literature and meta-analysis. International Journal of STD and AIDS 10:8-16.

254

The Right to Bodily Integrity 48

The American Journal of Bioethics

. 1999b. Does circumcision influence sexually transmitted diseases? A literature review. British Journal of Urology International 83(Suppl. 1 ):52-62. Weiss, H. A., M. A. Quigley, and R. J. Hayes. 2000. Male circumcision and risk of HIV infection in sub-Saharan Africa: A systematic review and meta-analysis. AIDS 14(15): 2361-70. Williamson, P. S., and M. L Williamson. 1983. Physiologic stress reduction by a local anesthetic during newborn circumcision. Pediatrics 71(1 ):36-40. Wilson, R. A. 1947. Circumcision and venereal disease. Canadian Medical Association Journal 56:54-56. Wiswell, T. E., R. W. Enzenauer, J. D. Cornish, and C. T. Hankins. 1987. Declining frequency of circumcision: Implications for changes in the absolute incidence and male to

female sex ratio of urinary tract infections in early infancy. Pediatrics 79:338-41. Wiswell, T. E., and D. W. Geschke. 1989. Risks from circumcision during the first month of life compared with those for uncircumcised boys. Ped/af/7'cs83(6):1011-15. Wiswell, T. E., and W. E. Hachey. 1993. Urinary tract infections and the uncircumcised state: An update. Clinical Pediatrics 32:130-34. Wiswell, T. E, and J. D. Roscelli. 1986. Corroborative evidence for the decreased incidence of urinary tract infections in circumcised male infants. Pediatrics 78:96-99. Wiswell, T. E., F. R. Smith, and J. W. Bass. 1985. Decreased incidence of urinary tract infections in circumcised male infants. Pediatrics 75:901-903.

The Right to Bodily Integrity

255

Addendum David Benatar In the article reprinted above,1 as well as in our subsequent response to critics,2 we emphasized the importance of careful consideration of the empirical evidence about the harms and benefits of circumcision in undertaking a moral evaluation of the practice. In the decade since those papers were published the evidence about circumcision has evolved, but only marginally. The most significant development has been the publication of three important studies3 that have reinforced the earlier evidence that circumcision has a protective effect against HIV. These studies were conducted in, respectively, South Africa, Kenya and Uganda, and they were all terminated early by their data and safety monitoring boards because the clear protective effect they demonstrated raised the ethical problem of withholding the option of circumcision from the control subjects in those studies. While this new evidence deepens our confidence that circumcision does indeed have a protective effect against HIV, it does not alter the conclusion we reached about circumcision. More specifically it does not imply that we should shift from thinking that circumcision is appropriately a matter for parental discretion to thinking that circumcision should be routinely performed on newborn boys or even that it should be recommended to parents. We should not alter our conclusion because what has changed is the weight of the evidence for a benefit that was previously counted, not the presence or magnitude of the benefit itself. The three studies emanating from Africa have provided further evidence not only of circumcision's protective effect against HIV but also of (at least some) anti-circumcision advocates' resistance to any evidence that circumcision may have benefits. For example, in responding to a paper4 referring to these studies and noting the medical benefits of circumcision, Gregory Boyle and George Hill claim that in "an egregious omission" the authors "failed to acknowledge that in a parallel RCT [randomised controlled trial] into male-to-female transmission of HIV ... MC [male circumcision] was associated with a 61% relative increase in HIV infection among the female sexual partners of HIV-positive men".5 However, the source they cited in support of this claim6 does not in fact support it. According to that study there was an elevated risk, unsurprisingly, where the resumption of sexual activity preceded healing of the circumcision wound, but not when one counts only those who resumed sexual activity after wound healing.7 This is actually a modest consideration in favour of circumcision during the neonatal period, as the protective effect is gained without the risk consequent to sexual activity during the period of wound recovery. Another way in which those opposed to circumcision resist new evidence of its benefits is to deny that the evidence really is evidence. They do this by finding fault with the studies' methodologies. However, there are at least two curious features of this complaint. First, it is highly selective. For example, Professor Boyle and Dr Hill criticize8 the African HIV studies that show a protective effect of circumcision on the grounds that these studies were terminated early and yet Professor Boyle and Dr Hill offer no such criticism of the study that

256

The Right to Bodily Integrity

they claim demonstrated an increased risk of transmission of HIV from circumcised men even though that study was also terminated early. Second, if their concerns were really about methodology, one would expect that the solution would be to design and run a trial free of those problems. Since the research subjects would be consenting adults, the purported problem of circumcising children involuntarily would not arise. Yet we do not see opponents of circumcision recommending or conducting such trials. This, of course, is because they think that circumcision is wrong quite independently of the evidence. However, as Michael Benatar and I argued in our earlier papers, one cannot reach the conclusion that circumcision is wrong a priori. Whether circumcision constitutes wrongful mutilation or whether it wrongfully violates bodily integrity cannot be answered without determining whether the practice is a net benefit or a net harm. That in turn cannot be determined without careful consideration of the evidence.

Notes 1

First published: Michael Benatar, David Benatar, "Between Prophylaxis and Child Abuse: The Ethics of Neonatal Circumcision", American Journal ofBioethics, Vol. 3, No. 2, Spring 2003, pp. 35^8. 2 David Benatar, Michael Benatar, "How not to argue about circumcision", American Journal ofBioethics. Vol. 3 No. 2, Spring 2003 (http://www.tandfonline.com/doi/abs/10.1162/152651603102 387820#.U6rDYBZgtgO). 3 Bertran Auvert et al, "Randomized, Controlled Intervention Trial of Male Circumcision for Reduction of HIV Infection Risk: The ANRS 1265 Trial", PLoS Medicine, Vol. 2, Issue 11, November 2005, pp. 1112-22; Robert C. Bailey et al, "Male circumcision for HIV prevention in young men in Kisumu, Kenya: a randomized controlled trial", The Lancet, Vol. 369, 24 February 2007, pp. 643-56; Ronald H. Gray et al, "Male circumcision for HIV prevention in men in Rakai, Uganda: a randomised trial", The Lancet, Vol. 369, 24 February 2007, pp. 657-66. 4 Aaron Tobian and Ronald Gray, "The medical benefits of male circumcision", JAMA, 2011, Vol. 36, pp. 1479-80. 5 Gregory Boyle and George Hill, "Circumcision-generated emotions bias medical literature", BJUInternational, 2012, Vol. 109, ell. 6 Maria Wawer et al, "Randomized Trial of Male Circumcision in HIV-infected Men: Effects on HIV Transmission to Female Partners, Rakai Uganda", Lancet, July 18 2009, 374(9685) pp. 229-37. 7 It is also noteworthy that Wawer et al do not interpret their own (overall) findings in the same way as Boyle and Hill interpret them. Wawer et al say that their findings were that circumcision "did not reduce HIV transmission" whereas Boyle and Hill claim that it increased it. 8 "Sub-Saharan African randomised clinical trials into male circumcision and HIV transmission: Methodological, ethical and legal concerns", JLM, Vol. 19, 2011, pp. 316-34.

[9] Routine (Non-Religious) Neonatal Circumcision and Bodily Integrity: A Transatlantic Dialogue Wim Dekkers

ABSTRACT. In the current debate about the pros and cons of routine (nonreligious) neonatal circumcision (RNC), the emphasis is on medical justifications for the practice. Questions of human rights also are widely discussed. However, even if the alleged medical benefits of RNC were to outweigh the harms and risks, this is not a sufficient justification for RNC. The practice of RNC is questionable from a variety of viewpoints including not only the ideal of evidence-based medicine and human rights considerations, but also the notion of respect for bodily integrity.

T

wenty years ago Lynn Payer (1989) wrote a much-read book on the differences among medical practices and their underlying values in the United States, England, West Germany, and France. Living and working in Europe as a medical journalist, Payer was struck by the differences between U.S. and European medicine. At first, she was inclined to attribute all deviations from the American norm to the fact that European doctors were less well educated than those in the U.S., so that their medicine was more "primitive." However, as her understanding of European medical practices grew, she began to appreciate their usefulness and validity. Ways of looking at and treating illness that at first seemed purely "folkloric" started to seem reasonable and even desirable. Although many of the differences sketched by Payer have disappeared in the course of two decades, there is still one medical practice where a sharp distinction remains between the U.S. and Europe: non-religious routine neonatal circumcision (RNC). Although this is a routine medical practice in the U.S., the European medical establishment considers RNC an unnecessary surgical procedure. RNC is an example of "cultural diversity" in the field of medicine and health care that challenges the idea of interculturally shared values, methods, and practices.

258

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

The early history of male circumcision is lost in the mists of time. Before male circumcision became a crucial practice in Jewish and Islamic religion, it already was practiced for cultural—i.e., not specific-religious or medical—reasons, for example in ancient Egypt. The modern history of RNC, that is, circumcision for medical, hygienic, and preventive reasons, started in the U.S. in the 1870s when it was practiced as a treatment for all kinds of signs and symptoms allegedly related to "genital irritation" (Gollaher 2000). During the Victorian Era, a few American doctors, among them Lewis A. Sayre, began to circumcise boys to prevent a wide range of conditions such as masturbation, enuresis, impotence, epilepsy, and a variety of mental disorders. In the first half of the twentieth century, the practice of RNC spread throughout the country, touted as a means to prevent diseases such as urinary tract infections, venereal diseases, and penile cancer. Nowadays, neonatal circumcision is the most frequently performed surgical operation in the U.S.1 Opinions about RNC are deeply divided (Denniston, Hodges, and Milos 2004; Denniston et al. 2006; Dritsas 2001; Hinchley 2007; Patrick 2007). Medical practitioners are either for or against the procedure. Recently, a debate over the circumcision guideline of the American Academy of Pediatrics has again emerged (Schoen 2006; Jameson 2008). Advocates and opponents of RNC attack each other using both scientific and nonscientific (moral) arguments. Here I give two examples. Speaking about the alleged benefits of RNC, E. J. Schoen (1997), former chairman of the American Academy of Pediatrics and a fervent proponent of the practice, asked more than 10 years ago whether Europe was ignoring medical evidence. In a commentary on a meta-analysis of the effects of RNC on the prevalence of urinary tract infections (UTIs) he wrote: "Perhaps, as the growing evidence on the multiple proven preventive health benefits of newborn circumcision becomes more widely known and accepted, European practice will change; acknowledging the role of circumcision in protecting against UTI is a good start" (Schoen 2005, pp. 772-73). As an opponent of RNC, Petrina Fadel (2003), however, argues: Hospitals and physicians who perform non-therapeutic circumcisions on non-consenting infants must stop violating the integrity of those infants, stop tormenting their bodies, stop insulting their human dignity, and stop using them as instruments of financial gain. The time is long overdue for all hospitals to take the only morally acceptable action and stop this practice.

[ 1*6 ]

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE

These two quotations are quite exemplary for the RNC debate. Proponents focus on medical-scientific arguments and considerations about evidence-based medicine, while opponents base their view predominantly on moral notions and principles such as childrens' rights, childrens' integrity, and human dignity. It is important to realize, however, that scientific arguments are also based on moral arguments and that moral arguments cannot be considered separately from scientific reasoning. The key problem seems to be to find an adequate balance between these two kinds of arguments. I have met many Europeans, both medical doctors and lay people, who are totally unaware of the practice of RNC in the U.S. I also have met quite a number of people from the U.S. who are surprised to learn that most European men still have something to cover the glans of their penis. Is Europe ignoring evidence for the medical benefits of RNC? Is the U.S. ignoring a lack of (sufficient) evidence about the medical benefits? Should one of the two medical systems change? What is the value of moral considerations in the discussion? In the present contribution to the RNC debate, I focus on four issues that arise in the literature: (1) the (lack of) scientific evidence regarding the medical harms and benefits of RNC, (2) respect for the child's and its parents' right to informed consent, (3) the nature of the intervention, and (4) the moral weight of cultural considerations (Benatar and Benatar 2003). These four issues constitute four steps in my argumentation which can be summarized as follows. Because there is not sufficient evidence of the benefits of RNC, there are good reasons to leave the decision about circumcision to the child's parents. However, because RNC can be considered a violation of the principle "first do no harm," the question is whether RNC is a morally acceptable practice for physicians at all. Here the notion of respect for bodily integrity plays a crucial role. Because, in my opinion, this notion is underemphasized in the RNC debate, my argument especially advances this point of view. So far no definitive data have been presented to establish a case for routinely overriding the obligation to respect the integrity of the body, therefore physicians ought not to participate in the practice of RNC. Basic to my argument is a criticism of a version of "ethical relativism" that is related to a laissez-faire attitude toward the practice of RNC. HARMS, BENEFITS, AND COSTS

Much of the literature on RNC discusses the scientific evidence (or the lack of it) for the medical harms and benefits of the practice. Sometimes [ "7 1

259

260

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

the discussion is expanded to non-medical harms and benefits and to the costs of the intervention. Recently, the relationship between circumcision and HIV-infection has reappeared on the agenda. Harms Although the literature occasionally reports horrifying complications of RNC such as a total destruction of the penis (Davis 2000-2001), it is generally considered a simple procedure, which, if properly performed, seldom leads to complications. Possible medical harms of RNC are pain and complications such as bleedings and infections. The overall complication rate associated with newborn circumcision is approximately 0.2 percent (Christakis et al. 2000). This means that one of 476 circumcised boys is adversely affected in one or another way. Psychological harm is much more difficult to assess, but plays an important role in the argument I develop here. Benefits The benefits of RNC have been described in numerous studies using a wide variety of methodologies. Reported benefits include reductions in the rates of penile cancer, UTIs, and sexually transmitted diseases (STDs). Although the extent to which circumcision decreases the risk of these outcomes has been intensely debated, a consensus now appears to be emerging that there are some small protective benefits. A meta-analysis of published data on the effect of circumcision on the risk of UTIs in boys, for example, showed that circumcision reduces the risk. However, once an increased risk of UTI among uncircumcised boys has been established, the significance of this risk needs to be assessed. The protective effects of circumcision can be conveyed in terms of a so-called "number needed to treat." This number represents the number of newborns who would need to be circumcised to prevent one undesired outcome such as a UTI. A recent study revealed that given a risk in normal boys of about one percent, the number needed to treat is 111 (Singh-Grewal, Macdessi, and Craig 2005). This means that 111 circumcisions would be required to prevent one UTI. The authors therefore conclude, rightly in my opinion, that these data do not support the routine circumcision of normal boys, that is, boys without anatomical malformations of the urinary tract. An UTI generally is easy to treat, although, of course, the use of antibiotics can have negative side effects. Moreover, the treatment of an UTI does not cost much. [ 118 ]

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE

Circumcision and HIV A few years ago the RNC debate received a new stimulus by hitherto unexpected scientific findings about the relationship between male circumcision and HIV. Observational studies had shown that circumcised men appeared less likely to acquire HIV than non-circumcised men. The alleged mechanism is that the mucosal environment under the foreskin is more susceptible to HIV infection than in the circumcised penis. However, until recently, only a few randomized controlled trials, such as the Orange Farm Study, have shown a significant effect of male circumcision on the prevalence of HIV (Auvert et al. 2005). On the basis of these findings and the expected results of two—at that time ongoing—randomized controlled trials in Kenya and Uganda, the World Health Organization stated that the demand for male circumcision as a method for combating HIV/AIDS is likely to increase (Wise 2006). Since then several authors have stressed the need of a large scale circumcision campaign in order to prevent HIV infections (Short 2004). However, many of their assertions are reminiscent of statements made by fervent proponents of RNC in the U.S., now and in the past, exaggerating the alleged advantages, ignoring potential harms, and giving the impression that circumcision is no more than a simple intervention comparable to a vaccination.2 With the publication of the results of two trials in Kenya and Uganda in The Lancet of 24 February 2007, a new era has started (Bayley et al. 2007; Gray et al. 2007). These studies show that male circumcision halves the risk of adult males contracting HIV through heterosexual intercourse. Assuming that the methodology in these studies is adequate, the results speak for themselves. Despite this, I think one needs much more scientific evidence on the benefits of RNC to justify its practice. Moreover, many ethical issues arise in relation to future trials on the relationship between circumcision and HIV (Lie, Emanuel, and Grady 2006). Even though the two trials in Kenya and Uganda show a protective benefit of circumcision, factors such as the unknown complication rate of the procedure and negative behavioral consequences still need to be taken into account. Pleas for preventive circumcision also might distract attention from alternative ways of preventing the spread of HIV: lifestyle and sexual behavior, the use of condoms, and the development of a vaccine. We certainly can expect many more scientific findings about the relationship between male circumcision and HIV in the near future. I mention the two studies from Kenya and Uganda because some advocates of RNC in the U.S. are using these new findings to support their case for RNC

[ 1*9 ]

261

262

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

(Dickerman 2007). However, these data are of limited relevance to the RNC debate in the U.S. Taking into account the notion of a "prevention paradox" (Rose 2001), one might ask whether it is right to circumcise a whole population or a considerable part of it, when many will not benefit from the intervention, for example, because they do not engage in risky sexual behavior. Moreover, although neonatal circumcision might be safer, less expensive, and easier to organize than adolescent or adult circumcision, the child's sense of bodily integrity—as discussed later—provides an additional argument against circumcision for an issue that might not affect him for many years to come (Sawires et al. 2007). Furthermore, the medical, social, and cultural circumstances in the U.S. and African countries such as Kenya and Uganda are distinctly different. The adult risk of HIV is not high in the U.S. when compared with some African countries and access to life-saving antiretroviral drugs is widespread. Costs Ten years ago it was estimated that 58 percent of male newborns in the U.S. are circumcised at a cost of $500 to $800 million per year (Boyd 1998). In the past two decades a number of cost-effectiveness studies on RNC have been performed. From a recent cost-utility analysis, it appears that the practice of RNC costs more money and generates more adverse health effects over one's lifetime than does skipping the procedure (Van Howe 2004). This study demonstrates the absence of a compelling economic justification for RNC. Moreover, RNC is linked to a wide range of medical, psychological, sociocultural, and moral considerations that are not easily captured in quantitative cost-effectiveness analyses (Gray 2004). Finally, it is not self-evident that economic considerations should play a decisive role in the debate about RNC. Even if carrying out RNC were more cost-effective than forgoing the procedure, this must be weighed against other considerations, such as respect for the integrity of the body. Summary So Far Granting the complexity of the problem posed by an assessment of the harms and benefits of RNC, I conclude the following: (1) from a methodological perspective, the medical, psychological, and social benefits and harms of RNC are hard to determine; (2) although there are some purported benefits of circumcision, not all of them are supported by scientific evidence, leaving aside for the moment the relationship between circumcision and HIV, which needs much more scientific research; and (3) there is

11301

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE

no scientific evidence that a possible minimal advantage of circumcision counterbalances the disadvantages. Even if the advantages outweigh the disadvantages, it still remains to be seen whether neonatal circumcision should be applied on a large scale. In countries where RNC does not occur and where appropriate management of the foreskin is practiced, there is no medical demand for circumcision. Several studies suggest that good hygiene with regular washing may be just as effective at preventing the diseases allegedly being prevented by circumcision (Hutson 2004). These considerations raise the question of why RNC is still practiced in the U.S. at a time when evidence based medicine is the global standard. The answer must be sought in psychological, social, and cultural explanations. Although many advocates of RNC accuse opponents of RNC of "opinionbased" arguments and do their best to present scientific figures that support their view, they often fail to recognize that their own view is also based on sociocultural beliefs and values. There is nothing wrong with opinionbased arguments, assuming they are recognized as such and are clearly distinguished from scientific arguments. One of the moral arguments often used in the RNC debate is respect for the child's and parents' rights. RIGHTS OF THE CHILD AND PARENTS

Advocates of RNC focus on the alleged medical advantages, but the so-called medical aspects of RNC appear to be largely culturally based. RNC is recommended on medical or quasi-medical grounds, but for the most part it is legitimized within and through the social context. RNC is more often supported by older, male circumcised doctors than by younger, female (uncircumcised) doctors (Stein, Taggart, and Bass 1982; Goldman 1999). Doctors say they circumcise because parents request it, while parents choose it because doctors do it (Briggs 1985). Circumcision often is chosen by parents in order to prevent their son from looking different from his father or his peers. The belief is that an uncircumcised boy will feel uncomfortable if he does not match others. Once I heard the story of a couple with two sons. The oldest son had been circumcised as was his father, but after the birth of their second son the couple were very ambivalent about circumcising him. Although they had strong misgivings, they finally had him circumcised. "Otherwise we would have had two kinds of male persons in one family," they argued. Without wanting to trivialize the decision to be made by parents, one can ask what is wrong with two different kinds of male persons in one family. I think this is something that can be explained to children.

[ i3i 1

263

264

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

The American Academy of Pediatrics' most recent task force on circumcision concludes: Existing scientific evidence demonstrates potential medical benefits of newborn male circumcision; however, these data are not sufficient to recommend routine neonatal circumcision. In the case of circumcision, in which there are potential benefits and risks, yet the procedure is not essential to the child's current well-being, parents should determine what is in the best interest of the child. To make an informed choice, parents of all male infants should be given accurate and unbiased information and be provided the opportunity to discuss this decision. (AAP 1999)3

This quotation is an example of a position that is much defended in the literature: because there is not yet sufficient medical evidence for RNC, the parents must decide on the circumcision of their son after being well informed about the pros and cons (Christakis et al. 2000; Dresser 2003; Viens 2004). Benatar and Benatar (2003, p. 43) argue that there is real evidence of modest benefits, but conclude: We think that neonatal circumcision cannot unequivocally be said to yield a net medical gain or loss [. . . ] It is not something that can be said to be routinely indicated, nor something that is routinely contra-indicated. It is a discretionary matter. The decision whether or not to circumcise a child should thus be made by the parents.

In my view, these authors and the American Academy of Pediatrics are correct in stressing that there is not sufficient scientific evidence to argue in favor of neonatal circumcision on a large scale. I also welcome the conclusion that the decision about whether to circumcise a child should be made by the parents. This would be an enormous step forward compared to the old situation of a few decennia ago when neonatal circumcision was simply done without much deliberation. A precondition for a wise decision, however, is that parents obtain "accurate and unbiased information" about the medical pros and cons as requested by the American Academy of Pediatrics. It will not be easy to meet this condition in a culture that is still so circumcision-minded. Although good reasons exist to argue that parents should decide, the question of why circumcision should be done at an age when the child cannot give his consent is still open. When debating the moral acceptability of non-therapeutic forms of circumcision, the focus often is on protection of the child's rights (Hellsten 2004). The child's right to decide leads some opponents of RNC to argue that circumcision must be postponed until [ 132- I

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE

the age of 18 when the person himself can make a well-informed and deliberate decision. This argument makes sense to me, although it can (partly) be counterbalanced by more practical considerations: neonatal circumcision has less impact on the one whose foreskin is being removed, and the procedure is easier to organize and probably less expensive than circumcision at an adult age. The point that I want to make, however, is that even if one considers RNC a suitable matter for parental decision or for a decision by the child himself as an adult, the fact remains that circumcision is a medical procedure carried out by doctors. Although I sympathize with the position defended by the American Academy of Pediatrics and Benatar and Benatar, I would like to push this transatlantic dialogue a step further. Instead of the question "who should decide?" the more fundamental question is: "Is routine circumcision morally acceptable at all?" What is the moral basis for cutting off a part of the genitals of a healthy infant? Even an adult's decision to undergo circumcision for medical-preventive reasons is neither morally neutral nor uncontroversial. I am not arguing here against the right of an adult to have his penis circumcised, but I want to emphasize that we are talking about the removal of a healthy body part for dubious medical reasons. This observation should lead one to question the nature of the intervention and to consider what it invokes for the notion of respect for bodily integrity. NATURE OF THE INTERVENTION

For many doctors, neonatal circumcision is a simple routine intervention, of no more consequence than a vaccination, to be carried out in a few minutes.4 Others critically speak of "genital mutilation," "amputation," "child abuse," or even "a type of barbarism." The language used in the RNC debate is far from neutral. Whatever language one uses, however, at first sight RNC seems to be a violation of the Hippocratic principle "first do no harm." The argument that it is in the child's best interest to be circumcised is unconvincing. The dubious potential benefits of RNC are going to benefit the child only after it has grown up. In the short term, there is the harm of pain and (although rare) of possible negative side effects such as bleeding and infection. The purported psychological and social benefits—i.e., being accepted and socially integrated—are very difficult to assess. Referring to the principle "first do no harm" does not mean that neonatal circumcision is morally questionable only because of harmful side

1133 ]

265

266

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

effects. Many generally accepted medical interventions do have negative side effects. What is crucial in the case of RNC is the lack of a medical legitimization. The question therefore is what is harmed when a healthy body part of a newborn is cut off. Here the notion of respect for bodily integrity can play a role. Bodily Integrity Much of the effort to regulate the medical and non-medical use of the body is embedded in a moral language of sanctity, dignity, and bodily integrity. These notions represent a fundamental view of the human body in Jewish, Christian, and Islamic religions and also in (non-religious) philosophical thinking (Campbell 1991). For the sake of my argument, I shall distinguish between a body-oriented and a person-oriented approach to RNC based on the presupposition that the notion of respect for bodily integrity should not be identified with the idea of personal autonomy and control over one's body. The person-oriented approach is common in modern medical ethics and has been generally accepted in health law. It also appears in policy documents, in which it is argued that in showing respect for the integrity of the body, one shows respect for "the individual's right to a personal life and to self-determination over the body" (Rendtorff and Kemp 2004, p. 41, emphasis added). In terms of basic human rights, circumcision without explicit consent may violate the individual's right to bodily integrity. From this perspective, the problem with unrequested circumcision is "the unavoidable human rights implications of permanently removing healthy tissue from a person who has not consented to its removal and who must live the rest of his or her life with the consequences of that removal" (Denniston, Hodges, and Milos 1999, p. v). What basically characterizes this (neo)liberal understanding of bodily integrity is that it emphasizes the duty of others to respect the integrity of my body. Taking the person-oriented approach seriously, everyone whose foreskin is being removed should give his explicit consent, which of course is a strong argument in favor of circumcision on an adult age. The body-oriented approach, however, is helpful in showing why adult circumcision also can be controversial. The body-oriented approach is central to many religious (monotheistic) views of the human body, but also can be found in, for example, classic Greek and Roman thought and the philosophies of Thomas Aquinas and Immanuel Kant. This approach primarily focuses on duties toward one's

[ 1341

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE

own body rather than toward those of others. From this perspective, the notion of respect for bodily integrity can be opposed to the idea of personal autonomy and self-determination over the body. The body-oriented approach implies that the human body cannot (entirely) be owned or controlled because it has a moral value of its own. Even if people are considered to be the owners of their bodies, they are not allowed to do everything with their bodies that they might want to. In this paper, I focus mainly on the body-oriented approach. I outline three interpretations of "bodily integrity" that can be found in the literature and are relevant to the practice of RNC: biological, subjective, and normative wholeness. Biological Wholeness The idea of biological wholeness means that, although the human body consists of numerous body parts, organs, tissues, cells, and subcellular components, it is still an anatomical and physiological unity, an integrated whole that is more than the sum of its parts. Biological wholeness refers to the proper function of the body and its parts. From this perspective, it is curious that there has been so much debate on the question of whether the foreskin is an essential body part or can be seen as superfluous. Some Darwinism-oriented authors are of the opinion that the foreskin is nothing more than a vestige of the human being's evolutionary past (Gollaher 2000). Like most anatomists, however, I consider the foreskin not as a bit of excess tissue, but as an integral part of the sexual organ. Like adenoids and tonsils, which in the past also often have been removed without good scientific justification, the foreskin nowadays is considered to have useful and valuable functions: protection, immunological defense, erogenous sensitivity, and sexual functions in intercourse. In addition to serving these functions, the foreskin is a "normal" body part in the sense that it naturally belongs to the human body. The notion of biological wholeness can therefore be considered an argument against RNC. Subjective Wholeness It appears from the literature that men who have been circumcised seldom express feelings of not being "whole" anymore (Dekkers, Hoffer, and Wils 2005; 2006). However, a very small portion of men who were circumcised for non-religious reasons later regret—under the influence of the growing anti-circumcision movement in the U.S.—having been

[ 1351

267

268

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

circumcised. Stimulated by the so-called Foreskin Restoration Movement, there is a growing literature on negative feelings about bodily integrity in males circumcised in infancy without religious motivation. The shock and surprise of my life came when I was in junior high school, and I was in the showers after gym [...]! wondered what was wrong with those penises that looked different from mine [ . . . ] ! soon realized I had part of me removed. I felt incomplete and very frustrated when I realized that I could never be like I was when I was born—intact. That frustration is with me to this day. Throughout life I have regretted my circumcision. Daily I wish I were whole. (Davis 2001-2002, p. 512) Also the following comments have been described by men who were circumcised in their infancy: "psychologically and physically damaged," "desired to know what it would be like with a foreskin," "altered, not whole," "mutilated," "incomplete," and "deformed" (Lander 1999). It thus appears that a violation of biological wholeness does not necessarily go together with a lack of subjective wholeness (and the other way around). It is well known that people with all kinds of handicaps or amputated body parts still feel "whole." Moreover, it does not matter whether the negative feelings described above are "real" or just "imagined" and evoked under the influence of the anti-circumcision movement. They express a real psychological harm. As such they can be considered an argument against the practice of RNC. Normative Wholeness The biological and subjective wholeness of the human body is also a normative or moral wholeness. This means that the human body is characterized by dignity, sacredness, or intactness. Thomas Aquinas (1972, ST II, q. 65, art. 1) argues that each part of the human body "exists for the sake of the whole as the imperfect for the sake of the perfect" and that a body part "may only be sacrificed to preserve the life of the individual." Kant argued in the same vein (McKenny 1999; Powers 1999). A mutilation of the human body is permissible only if the intervention is necessary to preserve the whole body. According to Kant, one has not only moral duties toward oneself and other persons, but also toward one's body: "So nobody may therefore voluntarily mutilate himself in the important parts of his body, and still less do so for the sake of gain, without lowering himself" (Kant 1997, p. 371; Ak 27:631). He continues by arguing that hair, for example, is not an essential part of the body since it grows back again.

11361

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE

As far as I know, Kant did not address circumcision, but his thoughts about mutilation are relevant to the practice. The foreskin can hardly be considered an essential body part, but it is at least an integral part of the human body. It is therefore striking that the anti-circumcision movement speaks of "genital integrity." The first two sentences of the Declaration of Genital Integrity—adopted by the General Assembly of the First International Symposium on Circumcision, 3 March 1989—read: "We recognise the inherent right of all human beings to an intact body. Without religious or racial prejudice, we affirm this basic human right. We recognise that the foreskin, clitoris, and labia are normal, functional body parts" (Denniston, Hodges, and Milos 2004, p. 505). This quotation is in line with the person-oriented approach mentioned above, but it also contains elements of the body-oriented approach when it speaks about "normal, functional body parts" and emphasizes the intact human body. Bodily Integrity and RNC With this exploration of three interpretations of "bodily integrity," I do not want to argue that "naturalness " and biological wholeness are always to be preserved, that subjective feelings of missing a foreskin are sufficient reasons not to perform RNC, and that a normative wholeness is never to be violated. My purpose is to show that the principle of respect for bodily integrity, especially in the body-oriented approach, is relevant to the practice of RNC. Biological, subjective, and normative wholeness do not necessarily coincide, but taken together they form a strong argument for a reserved stance toward RNC. Respect for bodily integrity is an ethical principle in its own right, closely connected with, but fundamentally different from the principle of personal autonomy (Zwart 2000). It is not an absolute principle, but a principle that is prima facie binding, and subject to revision (Beauchamp and Childress 1994, p. 104). The principle of respect for bodily integrity can be overridden by competing moral obligations, for example, to obey God's law—as is the case in Judaism and Islam—or to contribute to the health of the patient. It is beyond the scope of this paper to discuss thoroughly the moral acceptability of religious male circumcision, but there are good reasons to argue that this religious practice is much less controversial than RNC. First, religious circumcision is based on a very old tradition, whereas RNC developed quite recently (in the nineteenth century). Second, religious circumcision is quite "normal" in the Jewish and Islamic community (at the moment almost 100 percent of all Jews and Muslims have been

11371

269

270

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

circumcised), whereas RNC is something of a strange habit in just a few countries—affecting only 50 percent of all male newborns in the U.S.. Third, religious circumcision is based on the Torah (Jews) and the Sunna (Muslims), whereas RNC is practiced on dubious medical grounds. Finally and most importantly, religious circumcision is an essential part of the religious, personal, and social identity of the people involved. RNC is also relevant to a kind of social identity, but in a much less fundamental way. For all these reasons I am inclined to argue that in the debate regarding male circumcision freedom of religious practice counts much more than dubious medical motivations. There are good reasons for doctors to perform a religious circumcision at parents' request, even if they have their misgivings about this practice. An important practical reason is that a medically safe procedure lowers the risk of negative side effects. However, when parents request a non-religious circumcision, doctors should take a much more reluctant stance. Because RNC is not practiced to obey God's law and because its overall benefits are dubious, preserving the integrity of the body in its several meanings deserves more consideration than in case of religious circumcision. The notion of respect for bodily integrity is an important one in many philosophical and theological frameworks, but ultimately it is based upon moral experiences. However, whether an experience can be called a moral experience depends upon the context, culture, or tradition in which the subject of that experience takes part. For many parents and nurses, witnessing a circumcision is a distressing and even agonizing experience.5 Even people with a Jewish and Islamic background confirm that witnessing a circumcision—although they feel that it definitely needs to be done—is not a pleasant experience (Dekkers, Hoffer, and Wils 2005). These findings underscore that, although witnesses of a circumcision may not speak in terms of bodily integrity or of a violation of the human body, they intuitively express feelings of ambivalence and hesitation that can be explained in terms of respect for the integrity of the body. It is this moral experience of the human body's integrity—or dignity or sanctity—that I have tried to bring forward. The question, however, is how to escape from a particular moral narrative to a more overarching perspective? To put it simply: What approach should one take to RNC if one is not inspired by the idea of respect for bodily integrity because witnessing a neonatal circumcision is not a moral experience for him or her? This question leads to the fourth and final step of this paper.

11381

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE CULTURAL DIFFERENCES AND ETHICAL RELATIVISM

The current rationale for RNC was developed after the operation already was in wide practice: to improve hygiene; to prevent phimosis, urinary tract infections, sexually transmitted diseases, and cancer of the penis; and also to make sons resemble their circumcised father and to conform socially with their peers. RNC is both a medical and a sociocultural phenomenon. For Thomas Szasz (1996), the medical rationalization of RNC is one of the most obvious illustrations of acculturation to the ideology of the "therapeutic state," the political order in which social control is legitimized through an ideology focused on health. The practice of RNC demonstrates how a procedure that once was thought to have medical benefits can be transformed into a culturally based norm, into a "social ritual with a grain of medical origin" (Hitchcock 1997, p. 260). In an editorial to a special section on irreversible bodily interventions in children, S0ren Holm (2004) argues that valid comparative data simply do not exist concerning the effects of early circumcision on adult sexual function and satisfaction. Until such data become available, he continues, the circumcision debate cannot be brought to a satisfactory conclusion. Although Holm touches on an important problem, that is, the lack of scientific evidence about benefits and harms caused by RNC, I do not think we should wait until that information is available because we probably will never reach that point. More of a challenge is Holm's (2004, p. 237) warning of a lingering suspicion that the sometimes rather strident opposition to circumcision is partly driven by "cultural prejudices, dressed up as ethical arguments." Because I live in a culture where RNC is not routinely practiced, I might well be culturally biased. With many Europeans I do not believe in RNC. However, the fact that RNC is disapproved in European culture is, of course, not sufficient reason to disapprove that practice in another culture. In other words, a version of ethical relativism, holding that something that is approved or disapproved in a person's culture is therefore right or wrong, is highly implausible. Descriptions about how or in what way groups are different do not settle the moral issue of how group members ought to act (Kopelman 1997). At stake are interculturally shared norms and values which necessitate an open view toward other cultures. For this reason, I have tried in this paper to explain a possible "cultural prejudice" in an ethical analysis—of the concept of respect for bodily integrity—instead of "dressing it up" as ethical argument.

[ 1391

271

272

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

Assuming that my arguments make sense, the question remains what allows "outsiders" to meddle in the U.S. cultural practice of RNC. Why should advocates of RNC be inspired or influenced by these sorts of arguments? These questions lead to the problem of how ethics should treat intercultural differences such as RNC. Culturally based practices such as slavery, experiments with human beings, and female circumcision (Kopelman 1997) often are debated in the context of multiculturalism. A multicultural approach is important to ensure a favorable and open attitude toward other cultures. In the context of the RNC debate, there is value in trying to step back from one's cultural assumptions and to view RNC from another cultural perspective. The problem, however, is that multiculturalism often is associated with some form of ethical relativism, claiming, at its most stringent, "that there are no common moral principles shared by all cultures" (Baker 1998, p. 201). In Against Relativism, Ruth Macklin (1999, p. vi) writes: "[although] ethical relativism can be sustained for some cultural practices and traditions, for others it should be rejected as a pernicious doctrine." In my view, RNC is a practice for which ethical relativism must not be sustained, although I would not go so far as to claim that it is a "pernicious doctrine" in the context of the RNC debate. Although the negative effects of some culturally-based practices—e.g., especially of female circumcision—are much more serious than those of neonatal male circumcision, RNC should be added to this list of those practices to be evaluated independently of social norms. The simple reason consists in the strange difference between, for example, the U.S. and Europe regarding the evaluation of the medical need to circumcise in this era of evidence based medicine. I therefore presume that my arguments do have some kind of moral authority in a country in which RNC is being practiced. The topic is important enough to be discussed in a transatlantic dialogue. In the context of RNC, there is a tension between the principle of respect for bodily integrity and the right to live according one's own cultural standards. In my view, the scale tips in the direction of respect for the integrity of the body. Given the fact that the overall advantages of RNC are dubious and presuming that parental autonomy—although perhaps the best policy option under current circumstances—is an insufficient legitimization for RNC, it is questionable whether this practice should persist.

[ 140 ]

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE CONCLUSION

In the current debate about the pros and cons of RNC, the emphasis is on medical scientific justifications. There is a large body of literature on the alleged benefits of RNC. But all in all, leaving aside the relationship between circumcision and HIV, there is only thin scientific evidence for a lowered risk of disorders such as UTIs and sexually transmitted diseases as a result of circumcision. The debate on the benefits and harms of RNC likely will continue for many years. However, even if the medical advantages of RNC outweigh the disadvantages, this is not a sufficient reason to apply RNC on a large scale. A second characteristic of the current debate is the emphasis on human rights considerations and respect for the parents' autonomy. From a policy perspective, one might argue that—given the current lack of clear scientific evidence—parents should decide about circumcision, but this leaves open the question whether RNC is morally acceptable at all. Physicians have a prima fade obligation to respect the bodily integrity of their patients. Empirical evidence relating to preventive medicine may provide a reason for overriding this obligation. As yet, however, no definitive data have been presented to establish a case for routinely overriding this obligation with respect to non-religious neonatal circumcision. Until such data are established, there are no acceptable reasons for overriding the physician's commitment to bodily integrity. Because RNC is an apparent violation of the Hippocratic principle "first do no harm," medical doctors should not participate in routine non-religious neonatal circumcision. This paper benefited from a discussion with the faculty of the Department of Bioethics, Case Western Reserve University, Cleveland. I especially thank Dena Davis and Nicholas King for their comments on an earlier version of this paper. NOTES

1. According to the Centers for Disease Control and Prevention (CDC), between 1979 and 2001, the percentage of male infants who were circumcised in U.S. hospitals ranged between 59 and 65 percent. Between 2001 and 2003, this percentage decreased from 63 percent to 56 percent (see http://wivw.cdc.gov/ nchs/products/pubs/pubd/hestats/circumcisions/circumcisions.htm, accessed 7 May 2009). 2. Francois Venter, Clinical Director of Reproductive Health and HIV-Research at the University of Witwatersrand, Johannesburg, stated: "One of the beauties of circumcision is that it is a one-off operation which takes 16-20 minutes

[ i4i 1

273

274

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

but then has a profound effect on the rest of a man's life" (Wise 2006, p. 509). Considering the potential influence of circumcision on HIV-infections, R. V. Short (2004, p. 24, emphasis added) argues: "If we believe in evidence based medicine, then there can be no debate about male circumcision; it has become a desirable option for the whole world [ . . . ] male circumcision can take its rightful place as the kindest cut of all" 3. This policy statement was reaffirmed by the American Academy of Pediatrics in May 2005. The Canadian Paediatric Society revisited RNC in September 2007. The conclusion is that the overall evidence of the benefits and harms of circumcision is so evenly balanced that the Society does not support recommending circumcision as a routine procedure for newborns and, hence, there is no indication that the position taken by the CPS in 1982 should be changed (see http://www.cps.ca/english/statements/FN/fn96_01.htm, accessed 8 May 2009). 4. "As a young medical student in the 1960s, I learned the technique of performing the surgical procedure of male circumcision. It was not difficult to learn this procedure, and I very rapidly became expert at removing the foreskin from a newborn. I was able to do circumcisions in a very short amount of time—four or five minutes. I did this at the parents' request, and I was oblivious to the infant's cry" (Fleiss 1998). 5. See, for example, the following experience: "My tiny son and I sobbed our hearts out. After everything I'd worked for, carrying and nurturing Joseph in the womb, having him at home against no small odds, keeping him by my side, constantly since birth, nursing him whenever he needed closeness and nourishment—the circumcision was a horrible violation of all I felt we shared, I cried for days afterwards" (Goldman 1999, p. 94). REFERENCES

AAP. American Academy of Pediatrics. Task Force on Circumcision. 1999. Circumcision Policy Statement. Pediatrics 103: 686-93. Aquinas, Thomas. 1972. Summa Theologiae. London: Blackfriars. Auvert, Bertran; Taljaard, Dirk; Lagarde, Emmanuel; et al. 2005. Randomized, Controlled Intervention Trial of Male Circumcision for Reduction of HIV Infection Risk: The ANRS 1265 Trial. PloS Medicine 2: 1112-22. Baker, Robert. 1998. A Theory of International Bioethics: Multiculturalism, Postmodernism, and the Bankruptcy of Fundamentalism. Kennedy Institute of Ethics Journal 8: 201-31.

[ 142- ]

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE

Bayley, Robert C.; Moses, Stephen; Parker, Corette B.; et al. 2007. Male Circumcision for HIV Prevention in Young Men in Kusuma, Kenya: A Randomised Controlled Trial. Lancet 369: 634-56. Beauchamp, Tom L., and Childress, James F. 1994. Principles of Biomedical Ethics. 4th ed. New York: Oxford University Press. Benatar, Michael, and Benatar, David. 2003. Between Prophylaxis and Child Abuse: The Ethics of Neonatal Male Circumcision. American Journal of Bioetbics 3 (2): 35-48. Boyd, Billy R. 1998. Circumcision Exposed: Rethinking a Medical and Cultural Tradition. Freedom, CA: The Crossing Press. Briggs, Anne. 1985. Circumcision: What Every Parent Should Know. Earlysville, VA: Birth and Parenting Publications. Campbell, Courtney S. 1991. Religion and the Body in Medical Research. Kennedy Institute of Ethics Journal 8: 275-305. Christakis, Dimitri; Harvey, Eric; Zerr, Danielle; et al. 2000. A Trade-Off Analysis of Routine Newborn Circumcision. Pediatrics 105 (Supplement): 246-49. Davis, Dena S. 2000-2001. Male and Female Genital Alteration: A Collision Course with the Law? Health Matrix: Journal of Law-Medicine 11: 487-570. Dekkers, Wim; Hoffer, Cor; and Wils, Jean-Pierre. 2005. Bodily Integrity and Male and Female Circumcision. Medicine, Health Care and Philosophy 8: 179-91. . 2006. Besnijdenis, lichamelijke integriteit en multiculturalisme: Een empirische en normatief-ethische studie. Radboud Universiteit Nijmegen, Centrum voor Ethiek. Budel: Damon. Denniston, George C.; Grassivaro Gallo, Pia; Hodges, Frederick M.; et al., eds. 2006. Bodily Integrity and the Politics of Circumcision. New York: Springer. Denniston, George C.; Hodges, Frederick M.; and Milos, Marilyn F, eds. 1999. Male and Female Circumcision. Medical, Legal, and Ethical Considerations in Pediatric Practice. New York: Kluwer Academic/Plenum Publishers. . 2004. Flesh and Blood: Perspectives on the Problem of Circumcision in Contemporary Society. New York: Kluwer Academic/Plenum Publishers. Dickerman, Joseph D. 2007. Circumcision in the Time of HIV: When is There Enough Evidence to Revise the American Academy of Pediatrics' Policy on Circumcision. Pediatrics 119: 1006-7. Dresser, Rebecca. 2003. Standards for Family Decisions: Replacing Best Interests with Harm Prevention. American Journal ofBioethics 3 (2): 54-55.

[ 1431

275

276

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2009

Dritsas, Lawrence S. 2001. Below the Belt: Doctors, Debate, and the Ongoing American Discussion of Routine Neonatal Male Circumcision. Bulletin of Science, Technology & Society 21: 297-311. Fadel, Petrina. 2003. Respect for Bodily Integrity: A Catholic Perspective on Circumcision in Catholic Hospitals. American Journal of Bioethics 3 (2): wl—w2. Fleiss, Paul M. 1998. Foreword. In Circumcision Exposed. Rethinking a Medical and Cultural Tradition, ed. Billy R. Boyd. Freedom, CA: The Crossing Press. Goldman, R. 1999. The Psychological Impact of Circumcision. BJU International 83 (Supplement 1): 93-102. Gollaher, David L. 2000. Circumcision: A History of the World's Most Controversial Surgery. New York: Basis Books. Gray, Darryl T. 2004. Neonatal Circumcision: Cost-Effective Preventive Measure or "The Unkindest Cut of All"? Medical Decision Making 24: 688-92. Gray, Ronald H.; Kigozi, Godfrey; Serwadda, David; et al. 2007. Male Circumcision for HIV Prevention in Men in Rakai, Uganda: A Randomised Trial. Lancet 369: 657-66. Hellsten, Sirkku K. 2004. Rationalising Circumcision: From Tradition to Fashion, From Public Health to Individual Freedom—Critical Notes on Cultural Persistence of the Practice of Genital Mutilation. Journal of Medical Ethics 30: 248-54. Hinchley, Geoff. 2007. Is Infant Male Circumcision an Abuse of the Right of a Child? Yes. British Medical Journal 335: 1180. Hitchcock, Rowena. 1997. Commentary on: E. J. Schoen, Benefits of Newborn Circumcision: Is Europe Ignoring Medical Evidence? Archives of Disease in Childhood 77: 260. Holm, S0ren. 2004. Irreversible Bodily Interventions in Children. Journal of Medical Ethics 30: 237. Howe, Robert S. van. 2004. A Cost-Utility Analysis of Neonatal Circumcision. Medical Decision Making 24: 584-601. Hutson, John. M. 2004. Circumcision: A Surgeon's Perspective. Journal of Medical Ethics 30:238-40. Jameson, Marnell. 2008. Delicate Decision: To Circumcise or Not? Los Angeles Times (31 March). Kant, Immanuel. 1997. Lectures on Ethics. Cambridge: Cambridge University Press. Kopelman, Loretta M. 1997. Medicine's Challenge to Relativism: The Case of Female Genital Mutilation. In Philosophy of Medicine and Bioethics: A

[ 144 ]

The Right to Bodily Integrity DEKKERS • A TRANSATLANTIC DIALOGUE

Twenty-Year Retrospective and Critical Appraisal, ed. Ronald A. Carson and Chester R. Burns, pp. 221-37. Dordrecht: Kluwer Academic Publishers. Lander, Mervyn M. 1999. The Man Behind Restoration. In Male and Female Circumcision: Medical, Legal, and Ethical Considerations in Pediatric Practice, ed. George C. Denniston, Frederick M. Hodges, and Marilyn F. Milos, pp. 311-15. New York: Kluwer Academic/Plenum Publishers. Lie, Reidar K.; Emanuel, Ezekiel J.; and Grady, Christine. 2006. Circumcision and HIV Prevention Research: An Ethical Analysis. Lancet 368: 522-25. Macklin, Ruth. 1999. Against Relativism: Cultural Diversity and the Search for Ethical Universals in Medicine. New York: Oxford University Press. McKenny, Gerald P. 1999. The Integrity of the Body: Critical Remarks on a Persistent Theme in Bioethics. In Persons and Their Bodies: Rights, Responsibilities, Relationships, ed. Mark J. Cherry, pp. 353-61. Dordrecht: Kluwer Academic Publishers. Patrick, Kirsten. 2007. Is Infant Male Circumcision an Abuse of the right of a Child? No. British Medical Journal 335:1181. Payer, Lynne. 1989. Medicine and Culture: Varieties of Treatment in the United States, England, West Germany, and France. New York: Penguin Books. Powers, Thomas M. 1999. The Integrity of the Body: Kantian Moral Constraints on the Physical Self. In Persons and Their Bodies: Rights, Responsibilities, Relationships, ed. Mark J. Cherry, pp. 209-32. Dordrecht: Kluwer Academic Publishers. Rendtorff, Jacob D., and Kemp, Peter. 2000. Basic Ethical Principles in European Bioethics and Biolaw. Vol. I. Autonomy, Dignity, Integrity and Vulnerability. Copenhagen: Centre for Ethics and Law/ Barcelona: Institut Borja de Bioetica. Rose, Geoffrey. 2001. Sick Individuals and Sick Populations. International journal of Epidemiology 30:427-32. Sawires, Shariff R.; Dworkin, Shari L; Fiamma, Agnes; et al. 2007. Male Circumcision and HIV/AIDS: Challenges and Opportunities. Lancet 369: 708-13. Schoen, Edgar J. 1997. Benefits of Newborn Circumcision: Is Europe Ignoring Medical Evidence? Archives of Disease in Childhood 77: 258-60. . 2005. Commentary on the Paper by Singh-Grewal et al. Archives of Disease in Childhood 90: 772-73. . 2006. Ignoring Evidence of Circumcision Benefits. Pediatrics 118: 385-87. Short, R. V. 2004. Male Circumcision: A Scientific Perspective, journal of Medical Ethics 30: 24.

[ 145 ]

277

278

The Right to Bodily Integrity KENNEDY INSTITUTE OF ETHICS JOURNAL • JUNE 2.009

Singh-Grewal, D.; Macdessi, J.; and Craig, J. 2005. Circumcision for the Prevention of Urinary Tract Infection in Boys: A Systematic Review of Randomised Trials and Observational Studies. Archives of Disease in Childhood 90: 853-58. Stein, M.; Marx, M.; Taggart, S.; and Bass, R. 1982. Routine Neonatal Circumcision: The Gap Between Contemporary Policy and Practice. Journal of Family Practice 15: 47-53. Szasz, Thomas. 1996. Routine Neonatal Circumcision: Symbol of the Birth of the Therapeutic State. Journal of Medicine and Philosophy 21: 137-48. Viens, Adrian M. 2004. Value Judgment, Harm, and Religious Liberty. Journal of Medical Ethics 30: 241-47. Wise, Jacqui. 2006. Demand for Male Circumcision Rises in a Bid to Prevent HIV. Bulletin of the World Health Organization 84: 509-11. Zwart, Hub. 2000. From Circle to Square: Integrity, Vulnerability and Digitalization. In Bioethics and Biolaw. Vol II. Four Ethical Principles, ed. Peter Kemp, Jakob Rendtorff, N. Mattsson Johansen, pp. 141-56. Copenhagen: Rhodos International Science and Art Publishers.

[ 146 ]

[10] MEDICINE'S CHALLENGE TO RELATIVISM: THE CASE OF FEMALE GENITAL MUTILATION LORETTA M. KOPELMAN

Our families, communities, and institutions increasingly include people from different cultural groups. Many of us have parents of different religious and ethnic origins. This diversity enhances our lives as we learn the pleasures of different foods, arts, music, and views. Being open-minded about various attitudes and beliefs challenges and benefits us. We do not want to rule out any unexamined options or suppose our preferences are absolute standards. Consequently, openness is a practical way to test what is true or meritorious in our views. Being open to others' views also shows that we respect and care about the people expressing those views and are interested in what they think and feel ([21], p. 1; [11]). Being receptive to diversity of thought, however, means that different views should be heard and debated on their merits, not that they should all be accepted. Medicine in the last half of the twentieth century has also experienced the benefits and challenges of cultural diversity. In addition to the growing differences within our nation, people from around the world increasingly seek medical care in the United States. While we ought to be respectful and receptive to other customs, some seem wrong. On what basis do we rationally establish that another culture's practices should be stopped? For example, Abdalla writes a ". .. custom practiced in Southern Yemen and along the Persian Gulf is to put salt into the vagina after childbirth . . . [because practitioners believe this] induces the narrowing of the vagina... to restore the vagina to its former shape and size and make intercourse more pleasurable for the husband" ([1], p. 16). In what follows, I argue that a clear example of interculturally shared values and methods may be found in medicine. These values and beliefs sometimes effectively and rationally challenge deeply embedded moral and cultural beliefs.1 That is, medicine cannot define or establish our moral values, but it can help evaluate them and the means we use to attain these goals. A consequence of this, however, is the implausibility of those versions of ethical relativism hold-

280

The Right to Bodily Integrity 222

LORETTA M. KOPELMAN

ing that something is right means it is approved in a person's culture and something is wrong means that it is disapproved. To demonstrate how shared goals and values can rationally challenge entrenched cultural attitudes and beliefs, thereby showing the implausibility of ethical relativism, I discuss the rite of female circumcision/genital mutilation. To introduce these issues, consider the following case:

I. A CASE Mr. and Mrs. A immigrated from a country in East Africa to North America. In their original homeland, the surgical rite of female circumcision and infibulation is performed on about ninety percent of the girls, and parents are thought to fulfill an important variety of duties to the child by having this done. These duties include religious and parental obligations to make it possible for daughters to marry and to foster their health, well-being, and beauty. This surgery involves removal of most of the girl's genitalia, including the clitoris, internal labia, and most of the external labia. Because of the risk of infections, this family prefers a medical facility over traditional practitioners, so they go to Dr. B. Dr. B refuses to perform the surgery, denying it is a Muslim religious requirement, as they believe; moreover, doing such surgery violates physicians' duties to do no harm and prevent unnecessary suffering because it causes increased likelihood of mortality and morbidity, including sexual dysfunction, infections, scarring, incontinence, and maternal-fetal jeopardy during labor and delivery. Mr. and Mrs. A return to East Africa and ask their cousin Dr. C to perform the surgery. They find Dr. C also refuses, saying this practice is wrong despite its cultural approval, for similar reasons as given by Dr. B. While this case is imaginary, situations like it are increasingly common as people from Africa and Southern Arabia engaging in such rites immigrate. They find people outraged over their practices that concern how to promote people's well being and fulfill important duties [ 12], [27], [ 1 ], [ 14].2 Also characteristic is that doctors and nurses in these countries actively try to stop these ancient practices of genital mutilation.3 According to some versions of ethical relativism, there is no basis for morally authoritative cross-cultural criticism because the right or dutiful action is one that is approved by the person's society or culture, and the wrong action is one that is disapproved by the person's society or culture; there are moral truths, but they are determined by the norms of the culture. In our example, this theory means that Dr. B's judgments have no moral authority to people of a different culture, and Dr. C is mistaken about this surgery being wrong, given its cultural approval.

The Right to Bodily Integrity

MEDICINE'S CHALLENGE TO RELATIVISM

281

223

Female circumcision/genital mutilation powerfully demonstrates both the role of medicine in evaluating the reasonableness of some entrenched cultural and moral beliefs, and in assessing the plausibility of ethical or cultural relativism. First, female circumcision/genital mutilation has wide approval within the countries where it is practiced and wide disapproval outside these cultures. In Southern Arabia and Africa,4 it is commonplace for varying amounts of the women's external genitalia to be removed. About eighty million living women have had this surgery, and an additional four or five million girls undergo it each year [16], [18]. Many international groups, including UNICEF, the International Federation of Gynecology and Obstetrics [22], the World Health Organization [31], and the American Medical Society [2] have condemned these rituals. A second reason these rites are a potent test case is that these practices are supposed to promote well-being and health and fight disease, goals that have approval in all cultures; consequently if cultures share values and methods about how to fulfill such goals, then these aims can be evaluated in a way that has moral authority.

II. SHARED VALUES AND METHODS Medicine incorporates many values and methods having wide intercultural acceptance, including agreement about the evils of causing unnecessary pain, the goods of promoting personal and public health, the duty to try to relieve suffering and avoid disease and pain, the importance of enhancing people's opportunities, and the need to help children thrive. For example, Mr. and Mrs. A, as well as Drs. B and C, want to promote the child's health; but there is a disagreement over how to achieve this end. We need not value all things similarly with people in another culture, or our own, to have coherent discussions with them about whether certain means will achieve ends. In addition, we share methods of discovery, evaluation, and explanation. These include methods for translating, debating, deliberating, criticizing, analyzing, negotiating, and evaluating data or technology. To do these things, however, we must share some consensus about them [10]. There are also internationally shared values and methods that make possible scientific research between cultures, and these are incorporated into medicine. These include the duty to evaluate information based upon evidence and merit, to be skeptical of results until there is sufficient evidence to rule out alternative explanations, and to be disinterested in collecting and weighing evidence. I will argue that medical practice illustrates that we can determine what is right or wrong in terms of means other than cultural approval or disapproval, because

252

The Right to Bodily Integrity 224

LORETTA M. KOPELMAN

we share intercultural values and methods that enable us to evaluate our reasons. As moral beings, we guide our behavior in part by reasons. Examination of reasons given by men and women who practice female circumcision/genital mutilation reveals many ways of entering the debate, using these shared values and methods.5

III. REASONS FOR FEMALE GENITAL MUTILATION Defenders of female circumcision/genital mutilation do not claim that this practice is a moral or religious requirement and end the discussion there; they are willing to give and defend reasons why they believe it is a good tradition. Five studies conducted by investigators from countries where female circumcision is widely practiced [6], [4], [18], [14], [1] establish that the primary reasons given for performing this ritual surgery are it 1) fulfills religious duties, 2) preserves group identity, 3) helps to maintain cleanliness and health, 4) preserves virginity and family honor and prevents immorality, and 5) furthers marriage goals including greater sexual pleasure for men. Each of the reasons given for this practice has been contested as unfounded or inconsistent with other important beliefs held by the communities that practice these rites [6], [14], [1], [13]. Most of those practicing female circumcision/genital mutilation are Muslim, and regard it as a religious requirement; yet it is not practiced in Saudi Arabia, the spiritual center of Islam, nor is it required in the Koran [6], [28], [18]. Many Islamic leaders vehemently deny it is a Muslim tradition [15]. KosoThomas ([14], p. 10) writes: "None of the reasons put forward in favor of circumcision have any real scientific or logical basis." To illustrate how medicine can effectively challenge some cultural beliefs, I will focus on the claim that female circumcision prevents illness and maintains cleanliness and health.

IV. HEALTH CONSEQUENCES Beliefs that female circumcision or infibulation promotes health and hygiene are incompatible with evidence from surveys done within cultures where these rites are practiced. It has been linked to mortality or morbidity such as shock, infertility, infections, incontinence, maternal-fetal complications, and protracted labor. The tiny hole generally left for blood and urine to pass is a constant source of infection. It causes painful intercourse and menstruation [6], [14], [1], [4], [18].

The Right to Bodily Integrity

MEDICINE'S CHALLENGE TO RELATIVISM

283

225

These surveys show that pain and complications vary with the extent of the mutilation. Female circumcision/genital mutilation is somewhat arbitrarily viewed as taking three forms. Type 1 circumcision involves removal of the clitoral hood, or prepuce. This is the least mutilating type and might not preclude or diminish sexual orgasms in later life, unlike other forms. When this surgery is performed on infants and small children, however, it may be difficult to avoid removal of additional tissue, because infants! genitalia are small, and the tools commonly used are razors and knives. In the southern Arabian countries of Southern Yemen and Musqat-Oman, Type 1 circumcision is commonly practiced. In African countries, however, Type 1 circumcision is often not regarded as a genuine circumcision [ 14], [ 1 ]. Only about three percent of the women in one East African survey had this type of circumcision [6]. Type 2, or intermediary, circumcision, involves removal of the clitoris and most or all of the labia minora. In Type 3 circumcision, or infibulation, the clitoris, labia minora, and parts of the labia majora are removed. The gaping wound to the vulva is stitched tightly closed, leaving a tiny opening so that the woman can pass urine and menstrual flow. There is evidence that Type 3, also known as Pharaonic circumcision, has been done since the time of the pharaohs [1]. In some African countries most young girls between infancy and ten years of age have Type 3 circumcision [ 1 ], [ 18], [4]. Traditional practitioners often use sharpened or hot stones, razors, or knives, frequently without anesthesia or antibiotics [22], [1], [6]. In many communities thorns are used to stitch the wound closed, and a twig is inserted to keep an opening. The girl's legs may be bound for a month or more while the scar heals [1], [6]. Types 2 and 3, both of which diminish or preclude orgasms,6 are the most popular forms. More than three-quarters of the girls in the Sudan, Somalia, Ethiopia, and other north African and southern Arabian countries undergo Type 2 or Type 3 circumcision, with many of the others circumcised by Type 1 [6], [18], [4], [14], [19]. One survey by Sudanese physician Asma El Dareer shows that over ninety-eight percent of Sudanese women have had this ritual surgery, twelve percent with Type 2 and eighty-three percent with Type 3 [6]. These rites are popular with one study reporting ninety-two percent of Somali women surveyed favor continuing Type 3 (seventy-six percent) or Type 2 (twenty-four percent) for their daughters [18]. Almost all girls experience immediate pain following the surgery [22], [6]. El Dareer found other immediate consequences, including bleeding, infection, and shock correlating with the type of circumcision: Type 1,8.1 percent; Type 2, 24.1 percent; and Type 3, 25.6 percent. Bleeding occurred in all forms of cir-

284

The Right to Bodily Integrity 226

LORETTA M. KOPELMAN

cumcision, accounting for 21.3 percent of the immediate medical problems in El Dareer's survey. She writes, "Hemorrhage can be either primary, from injuries to arteries or veins, or secondary, as a result of infection" ([6], p. 33). Infections are frequent because the surgical conditions are often unhygienic [22], [6]. The inability to pass urine was common, constituting 21.65 percent of the immediate complications [6]. El Dareer found 32.2 percent of the women surveyed had long-term problems, with 24.54 percent suffering urinary tract infections and 23.8 percent suffering chronic pelvic infection. Published studies by investigators from the regions where these rituals are practiced uniformly find that women had similar complaints about and complications from female genital mutilation: at the site of the surgery, scarring can make penetration difficult and intercourse painful; cysts may form, requiring surgical repairs; a variety of menstrual problems arise if the opening left is too small to allow adequate drainage; fistulas or tears in the bowel or urinary tract are common, causing incontinence, which in turn leads to social as well as medical problems; maternal-fetal complications and prolonged and obstructed labor are also well-established consequences [16], [22], [6], [14], [1], [20], [19], [27]. El Dareer's studies lead her to conclude that immediate and long-term complications are "almost invariable . . . especially at childbirth. Consummation of marriage is always a difficult experience for both partners, and marital problems often result. Psychological disturbances in girls due to circumcision are not uncommon" ([6], iiiiv). The operation can also be fatal because of shock, tetanus, and septicemia [22]. Despite this evidence, some practitioners of these rituals when interviewed insist that these rites are neither painful nor harm their patients [28]. Morbidity and mortality may even be higher than these studies indicate because, first, investigations are often conducted in cities and the complication and death rate is probably higher in rural areas [18]. Second, many of the countries where these rites are practiced have unenforced laws prohibiting these surgeries (some are remnants of colonial days); consequently, some people are reluctant to discuss with investigators technically illegal actions and their consequences. Third, some women do not attribute the complications to the surgery that they believe promotes their health and well-being [6]. Thus, a series of studies from these regions by investigators from these cultures documents that female genital mutilation has no benefits and is harmful in many ways, with both short- and long-term complications. The shared goals to promote cleanliness and health and prevent disease and disability are not fulfilled by the practices studied. One could argue that since one goal of medicine

The Right to Bodily Integrity

MEDICINE'S CHALLENGE TO RELATIVISM

285

227

is to reduce morbidity and mortality, doctors and nurses should cooperate with traditional practitioners toward this end. This narrow understanding of medical goals and values as technical efficacy in reducing morbidity and mortality, however, would also justify doctors and nurses assisting in the torture of political prisoners. The condemnation of such practices by international medical organizations shows that medicine's values extend beyond technical expertise. They include promoting practices that prevent morbidity and mortality and help the health, well-being, and flourishing of members of our communities.7

V. ETHICAL RELATIVISM There are many forms of ethical relativism, and I criticize and reject the version holding that to say that something is right means that it is approved of in the speaker's culture, and to say that something is wrong means that it is disapproved. In contrast, other versions of relativism may be noncontroversial. Descriptive relativism, for example, is the noncontroversial view that people from different cultures do act differently and have distinct norms. Descriptions about how or in what way we are different do not settle the moral issue of how we ought to act. Often relativism is presented as the only alternative to clearly implausible views entailing absolutism or cultural imperialism; sometimes it is used to stress obvious points that our own preferences are not absolute standards, or that different rankings and interpretations of moral values or rules by different groups may be justifiable; sometimes "relativism" is the term employed to highlight the indisputable influence of culture on moral development, reasoning, norms, and decisions. It may also be used to show how decisions about what we ought to do depend on the situation—for example, that it may not be wrong to lie in some cases. These points are not in dispute herein or even controversial, so my comments do not apply to these versions of relativism. The controversial position under discussion herein, called ethical or cultural relativism, is that to say an action is right means it is approved of in a person's culture and to say it is wrong means it is disapproved. If this view is correct, then there is no basis for establishing that one set of culturally established duties or moral values is right and another wrong. On this view, moreover, it is incoherent to claim that something is wrong in a culture yet approved, or right yet disapproved by the culture. According to ethical relativism, when people make moral judgments about things done in other cultures, they are expressing only their cultural point of view, not

286

The Right to Bodily Integrity 228

LORETTA M. KOPELMAN

one that has moral authority in another culture; positions taken by other countries or international groups merely reflect particular societal opinions having no moral standing in another culture [29], [9], [23], [25]. In contrast to such versions of ethical relativism, other traditions hold that to say something is morally right means that the claim can be defended with reasons in a certain way. Saying that something is approved does not settle whether it is right, because something can be wrong even when it is approved by most people in a culture. Moral judgments do not describe what is approved but prescribe what ought to be approved. Thus people's belief that female circumcision/genital mutilation is right because it promotes health and cleanliness does not make this opinion true, or their subsequent behavior to fulfill these goals right. What we believe and do can be rationally evaluated using some shared values and methods. Because medicine is practiced in many similar ways all over the world, medicine's values and beliefs can be a powerful means to challenge some entrenched moral and cultural beliefs such as those about female genital mutilation. Consequently, the version of ethical relativism considered herein seems an implausible view for this and other reasons I will now consider.

VI. DIFFERENTIATING AND COUNTING CULTURES? According to ethical relativism, the final determination of what is good or bad, right or wrong, is cultural approval and disapproval. People who are in doubt about what they ought to do need to find out what is approved in their cultures. To develop a useful theory, therefore, we must know how to distinguish one culture from another. How big or old or vital must a culture, subculture, or group be in order to be recognized as a society whose moral distinctions are selfcontained and self-justifying? In short, how exactly do we count or separate cultures? A society is not a nation-state, because some social groups have distinctive identities within nations. If we do not define societies as nations, however, how do we distinguish among cultural groups, for example, well enough to say that an action is child abuse in one culture but not in another? Consider this issue of differentiating cultures in relation to our example. Do Drs. B and C belong to the same culture? One might cogently argue that they do because they both have similar training in medicine, read the same journals, and attend international medical meetings that condemn female genital mutilation, as well as work for other important goals such as world peace and preventative health care. On the other hand, one might also plausibly argue that Drs. B and C

The Right to Bodily Integrity MEDICINE'S CHALLENGE TO RELATIVISM

287 229

are not members of the same culture since they belong to different religions, races, are citizens of different countries, share no common language, live half a world apart, and differ in many of their customs and experiences. Another problem is determining Mr. and Mrs. A's culture because they, while Muslim, live in predominantly Christian North America, and cling to cultural practices from East Africa not shared by most Muslims. Do they even share a culture with their cousin Dr. C who grew up with them, yet disagrees about this and other cultural practices? One difficulty, then, is that it seems implausible to say most of us live in one culture. Consider a real case. An Islamic scholar from Gambia, Baba Lee, committed to eradication of female genital mutilation, left his daughter with his mother. She disagreed with him, and had her granddaughter circumcised while he was gone [28]. It is rare to find a place in the world where people live under the umbrella of a single culture. Another difficulty for those claiming ethical relativism is a useful theory for establishing the meaning of right and wrong, or learning of our duties, concerns how we know what is approved or disapproved within some culture. Not only is there a problem about distinguishing cultures, but in any community there can be passionate disagreement, ambivalence, or rapid changes about what is approved or disapproved. Approval ratings for political leaders, laws, or wars, for example, may change weekly. According to ethical relativism, where there is no significant agreement within a culture, there is no way to determine what is right or wrong. But what agreement is significant? As we saw, some people in cultures practicing female genital mutilation, often those with higher education, actively work to stop it [6], [14], [28], [1]. If defenders of ethical relativism mean it to be a useful theory, they cannot say that people's cultures are an overlapping patchwork of similarities and differences, as many of us would be inclined to say. Defenders of ethical relativism must offer some cogent means to distinguish between cultures and establish what is approved or disapproved within them; otherwise, the theory is useless as a means to find out what traits are virtuous or vicious, what things are right or wrong, or how people ought to act. To say that people may belong to various cultures that overlap and have many variations fails to give a way to determine this. To summarize, it seems implausible to say most of us live in one culture or that cultures are clearly separated. If we cannot identify the relevant culture or what counts as sufficient approval or disapproval to be judged right or wrong in a culture, then it is not helpful to put forth the theory that to say something is right means it has cultural approval and wrong if it has cultural disapproval.

288

The Right to Bodily Integrity 230

LORETTA M. KOPELMAN

VII. WORKING FOR IMPROVEMENTS Another cluster of problems arises for this version of ethical relativism when we consider the important task of working for improvements within our cultures or communities. We often make claims like, "This is approved in my culture, yet wrong." The activists working to change practices of female genital mutilation in their countries, for example, do so because they believe what is approved sometimes is wrong. Relativists who want to defend the meaningfulness of saying that something is approved but wrong, or there are sound cross-cultural moral judgments (for example, about the value of freedom and human rights in other cultures) seem to have two choices. On the one hand, if they agree that some cross-cultural norms have moral authority, they should also agree that some intercultural judgments about female circumcision/genital mutilation also may have moral authority. Some relativists such as Sherwin [24] take this route, thereby abandoning the version of ethical relativism being criticized herein. On the other hand, if they defend this version of ethical relativism yet make cross-cultural moral judgments about the importance of values like tolerance, group benefit, and the survival of cultures, they will have to admit to an inconsistency in their arguments. For example, anthropologist Scheper-Hughes [23] advocates ethical relativism and tolerance of other cultural value systems; however, she fails to acknowledge that she is saying that tolerance between cultures is right and that this expresses a cross-cultural moral judgment about tolerance. Similarly, advocates of ethical relativists who say it is wrong to eliminate rituals that give meaning to other cultures are also inconsistent in making a judgment that presumes to have genuine cross-cultural moral authority about what is right and wrong. Thus, it is not consistent for defenders of this version of ethical relativism to make intercultural moral judgments about tolerance, human rights, group benefit, intersocietal respect, or the value of cultural diversity. The burden of proof, then, is upon defenders of this version of ethical relativism to show why we cannot do something we think we sometimes do very well, namely, meaningfully criticize what is approved or disapproved in our own cultures, engage in intercultural moral discussion, cooperation, or criticism, or support people whose welfare or rights are in jeopardy in other cultures in a way that has moral authority. In addition, defenders of ethical relativism need to explain how we can justify the actions of national or international professional societies that take moral stands in adopting policy. For example, international groups may take moral stands that advocate fighting a pandemic, stopping wars, halting oppression, promoting health education, or eliminating poverty, and their views have moral

The Right to Bodily Integrity

MEDICINE'S CHALLENGE TO RELATIVISM

289

231

authority in some cases. Some might respond that our professional groups are themselves cultures of a sort. But this response raises the already discussed problem of how to differentiate cultures. The version of relativism criticized herein holds that cross-cultural moral judgments have no moral force. Its distinctive feature is its skeptical position about the limits of knowledge, claiming that one can never make a cross-cultural moral judgment that has moral authority.8 Williams [29], Ginsberg [9], and Shweder [25] hold forms of this position. This view is false if people from one culture can sometimes make judgments about actions in another society that have moral authority.9 That is, opponents need not show all our judgments, values, and methods are similar to defeat this position. For example, whatever other differences they may have, if Drs. B and C, who are from different cultures, make the same judgments about female circumcision in a way that has intercultural moral authority, then ethical relativism cannot be true. In short, this version of ethical relativism cannot give a plausible account of something we regard as an important part of our lives, working for improvements in our communities.

VIII. DO WE SHARE VALUES AND METHODS? Some might object to my arguments saying that we do not really share values and methods as I have presupposed, and thus there is no real basis for meaningful cross-cultural moral evaluations. We cannot really understand another society well enough to criticize it, the argument might go, because our feelings, concepts, or ways of reasoning are too different; our so-called ordinary moral views about what is permissible are determined by our upbringing and environments to such a degree that they cannot be transferred to other cultures. For example, critics might argue that we may think that Drs. B and C make the same moral judgments; but, we cannot know this given our cultural barriers. There are two ways to understand this objection [26]. The first is that nothing counts as understanding another culture except being raised in it. If that is what is meant, then the objection is valid in a trivial way. But it does not address the important issue of whether we can comprehend well enough to make relevant moral distinctions or engage in critical ethical discussions about, for example, aggression, oppression, theft, or cooperation. In addition, the problem remains about what it means to be raised in the same culture when, as we discussed earlier, it is implausible to suppose most people are raised in or belong to just one culture.

290

The Right to Bodily Integrity 232

LORETTA M. KOPELMAN

The second, and nontrivial, way to understand this objection is that it means our experiences have shown that we cannot understand another culture well enough to justify claiming to know what is right or wrong in that society. Yet our experiences suggest we can do this very well. We ordinarily view international criticism concerning, for example, human rights violations, aggression, torture, and exploitation as important ways to show that we care about the rights and welfare of other people, and in some cases these responses have moral authority. In addition we can translate, debate, criticize each other's reasoning, and so on, and by these means show our shared values and methods. This does not mean that all disputes can be resolved by these shared values and methods within or across cultures. Some disagreements, such as those over abortion and euthanasia, resist solution because reasonable and informed people of good will rank important values differently. Our experiences, then, suggest we share many values and methods between cultures.

IX. AVOIDING CULTURAL IMPERIALISM The version of ethical relativism we have been considering does not avoid cultural imperialism, as defenders such as Scheper-Hughes [23] sometimes suppose. To say that an act is right on this view means that it has cultural approval. A culture, however, may approve acts of war, terrorism, oppression, enslavement, aggression, exploitation, racism, or torture; and, on this view, that means those acts are right in that culture. The disapproval of other cultures is irrelevant in determining whether these acts are right or wrong; accordingly, the disapproval of people in other cultures, even victims of war, oppression, enslavement, aggression, exploitation, racism, or torture, does not count in deciding what is right or wrong except in their own culture. This view not only entails agreement that female genital mutilation is right in cultures where it is approved but the affirmation that anything else with wide social approval is right, such as slavery, war, discrimination, oppression, racism, and torture. If defenders of the version of ethical relativism criticized herein are consistent, they will dismiss any objections by people in other cultures as merely an expression of their own cultural preferences, having no moral standing whatsoever in the society that is engaging in the acts in question. Defenders of ethical relativism must explain why we should adopt a view which, when consistently defended, leads to such atrocious conclusions. It leads to the conclusion that we cannot make intercultural judgments with moral force about societies that start wars, practice torture, or exploit and oppress other groups; that is, as long as these activities are approved in the society that does them, according to this

The Right to Bodily Integrity

MEDICINE'S CHALLENGE TO RELATIVISM

291

233

view, they are right. Yet the world community believes that it makes important cross-cultural judgments with moral force when it criticizes slavery, apartheid, aggression, repression of dissidents, or denial of equality of opportunity to women. Representatives from the criticized society usually try to defend themselves by saying that their practices are morally justified in their own cultures because of their special traditions, even if they would not be in another society. If ethical relativism is convincing, such responses ought to be as well.

X. OPPRESSION Even where female circumcision/genital mutilation is popular with the majority of people, a minority would like to stop these rites. For example, Baba Lee, an Islamic scholar from Gambia, denies that female genital mutilation is an Islamic tradition, but is a bad tribal practice: "It is a means of suppressing women . . . [and] to teach women how to be obedient, how to be subdued with men, how to carry on traditions that matter" ([28], p. 326). Investigators from these regions have found other men who join women in these countries by condemning these rites. Abdalla writes that they agree this custom "... serves no purpose; it has ill effects on health; it lessens sexual desire (enjoyment) for women; it is based upon male chauvinism" ([1], p. 97). Unless adults understand the harms, it is still questionable whether they make a voluntary choice. Children, of course, cannot assess the harms and have no opportunity to choose. Some men and women in these regions, particularly those with more education, would prefer not to perform these rites, Abdalla contends, but many of them "do not have the guts to totally abandon circumcision of women" ([1], p. 94). Studies indicate many men and women would not want to have this surgery for themselves or their daughters if they believed it would not hurt their marriage prospects or other opportunities. This suggest that their approval is manipulated by an institutional framework they do not entirely accept. People who oppose these practices, especially outsiders, run risks. Lightfoot-Klein points out some have even been mutilated or killed for their efforts [17]. Koso-Thomas [15] attributes the popularity of these rites to ignorance. Some argue that we should use the same sort of international sanctions to oppose genital mutilation as those employed to challenge other human rights violations; while others favor education as the best way to change these cultural practices [28]. I have neither addressed how best to persuade people to stop these rites, nor discussed the proper limitations of tolerance in a just society. I have only tried to show that we have means for evaluating these practices, attitudes, and beliefs in a way that has moral authority across cultures.

292

The Right to Bodily Integrity 234

LORETTA M. KOPELMAN

XL CONCLUSION An effective way to debate the merits of our different but entrenched cultural beliefs and values is to employ a common ground of shared values and methods. Despite our cultural differences, we share many values and methods of discovery, evaluation, and explanation. These enable us, sometimes correctly, to judge other cultures, and they us. Moral judgments can be evaluated at least in terms of their consistency, factual presuppositions, and their coherence with stable evidence, like medical or scientific findings. By this means, certain moral claims can be challenged across cultural boundaries in a way that has moral authority. As values and methods become more and more integrated worldwide, they increasingly provide inroads to evaluate the rational basis of some deeply held cultural and moral beliefs. The common ground used here to show these points is that of medical practice. Medicine does not embrace, define, or establish all our moral goals and values. Cultures around the world share enough of medicine's values and methods, however, for them to serve as the basis of some genuine cross-cultural examination and intercultural moral criticism of goals and means to those ends. Defenders of female circumcision/genital mutilation, as we have seen, claim it prevents disease, promotes health and cleanliness, as well as maternal and child well-being. The stable evidence shows that this is false. Moreover, Ntiri [18], Abdalla [1], and Koso-Thomas [14] find many women in these cultures, when interviewed, attribute health problems to circumcision and infibulation such as their keloid scars, urine retention, pelvic infections, puerperal sepsis, and obstetrical problems. Studies document that these rituals deny women sexual enjoyment or orgasms, cause significant morbidity or mortality among women and children, and strain the overburdened health-care systems in these developing countries. Beliefs that female genital mutilation enhances fertility and promotes health, that women cannot have orgasms, and that allowing the baby's head to touch the clitoris during delivery causes death to the baby are incompatible with medical information gathered in these cultures using methods having approval therein. Furthermore, outright inconsistencies of reasoning appear when people within these cultures defend female circumcision/genital mutilation. For example, on the one hand, they believe these practices deprive women of nothing important because they do not think that women can have orgasms or that sex can be directly pleasing to women; their pleasure comes only from knowing they contribute to their husbands' enjoyment. On the other hand, one justification for the surgery is that women without it have uncontrollable sexual appetites [ 14], [6],

The Right to Bodily Integrity MEDICINE'S CHALLENGE TO RELATIVISM

293 235

[1]. Moreover, on the one hand, they believe these rites promote health and prevent morbidity and mortality. On the other, the rites are known to cause scarring, infection, incontinence, morbidity, and mortality [14]. The version of ethical relativism under consideration can be consistently held. Ethical relativism seeks to explain the meaning and use of moral terms and judgments with a single-dimension, cultural approval and disapproval. It leads to conclusions so far from how we use moral terms and judgments, however, that the theory is very implausible. When consistently defended, the version of ethical relativism under consideration leads to the implausible doctrine that we live in separate and uniform societies rather than in families and communities that draw from many identifiable groups. It denies that we can take the first step to moral improvements, namely judging that the status quo is wrong, or what our culture disapproves is right. In addition, rather than avoid cultural imperialism or tyranny, this version of ethical relativism seems to promote it, giving a license to some cultures to ignore international condemnation of their aggression, wars, suppression or torture, as long as what they do has approval within their own culture. Finally, it seems to belie the experiences we have of working internationally on such projects as peace, world health, and environmental safety. Thus, while this view can be consistently defended, it leads to implausible and even abhorrent conclusions. Department of Medical Humanities East Carolina University School of Medicine Greenville, North Carolina

NOTES 1 This thesis should not be contused with medicalization of moral problems by mistakenly turning "bad" behavior into "sick" behavior. I also reject the view that moral judgments can be "reduced" to descriptive or scientific claims. 2 It is practiced, for example, by Muslim groups in the Philippines, Malaysia, Pakistan, Indonesia, Europe, and North America [12], [27], [1 ], [14]. Parents may use traditional practitioners or seek medical facilities to reduce the morbidity or mortality of this genital surgery. Some doctors and nurses perform the procedures for large fees or because they are concerned about the unhygienic techniques that traditional practitioners may use. In the United Kingdom, where about 2,000 girls undergo the surgery annually, it is classified as child abuse [27]. Other countries have also classified it as child abuse, including Canada and France [12].

294

The Right to Bodily Integrity 236

LORETTA M. KOPELMAN

3

For example see the work of Abdalla [1], Calder [4], Rushwan [22], El Dareer [6], Koso-Thomas [14], Kouba and Muasher [16], and Ntiri [18]. 4 This tradition is prevalent and deeply embedded in many countries, including Ethiopia, the Sudan, Somalia, Sierra Leone, Kenya, Tanzania, Central African Republic, Chad, Gambia, Liberia, Mali, Senegal, Eritrea, Ivory Coast, Upper Volta, Mauritania, Nigeria, Mozambique, Botswana, Lesotho, and Egypt [1], [18], [4], [22], [6], [14]. Modified versions of the surgeries are also performed in Southern Yemen and Musqat-Oman [1]. s Portions of this paper were adapted from Kopelman [13]. 6 Some people in these cultures deny that it precludes orgasms for women, but the author who reports this doubts their claims [17]. 7 See codes in the Appendix to the Encyclopedia of Bioethics, Volume 5, 1995. s Many attacks have been made on the skepticism underlying such ethical relativism [3], [10], and my remarks are in this tradition. l> As I pointed out earlier, one can also question if it is meaningful to speak of most people as belonging to one culture.

REFERENCES 1.

Abdalla, R. H. D.: 1982, Sisters in Affliction: Circumcision and Infibulation of Women in Africa, Zed Press, London, U. K. 2. American Medical Society: 1991, 'Surgical modification of female genitalia', House of Delegates Amended Resolution 13 (June). 3. Bambrough, R.: 1979, Moral Skepticism and Moral Knowledge, Routledge and Kegan Paul, London, U. K. 4. Calder, B. L., Brown, Y. M. and Rac, D. I.: 1993, 'Female circumcision/genital mutilation: Culturally sensitive care', Health Care for Women International 14: 3, 227-238. 5. Dirie, M. A., and Lindmark, G.: 1992, The risk of medical complication after female circumcision', East African Medical Journal 69,479-482. 6. El Dareer, A.: 1982, Woman, Why Do You Weep ? Circumcision and Its Consequences, Zed Press, London, U. K. 7. Encyclopedia of Bioethics, 2nd ed., 1995, W. T. Reich, (editor-in-chief), Simon & Schuster-Macmillan, New York, NY. 8. Fourcroy, J. L.: 1983,'L'eternal couteau: Review of female circumcision*, Urology 22,458-461. 9. Ginsberg, F.: 1991, 'What do women want? Feminist anthropology confronts clitoridectomy', Medical Anthropology Quarterly 5,17-19. 10. Hampshire, S.: 1989, Innocence and Experience, Harvard University Press, Cambridge, MA. 11. Kane, R.: 1994, Searching for Absolute Values in a Pluralistic World, Paragon House, New York, NY.

The Right to Bodily Integrity

MEDICINE'S CHALLENGE TO RELATIVISM

295

237

12. Kluge, E.-H.: 1993, 'Female circumcision: When medical ethics confronts cultural values' (editorial), Canadian Medical Association Journal 148,288-289. 13. Kopelman, L. M.: 1994, 'Female circumcision/genital mutilation and ethical relativism', Second Opinion 20,55-71. 14. Koso-Thomas, O. A.: 1987, The Circumcision of Women, Zed Press, London, U. K. 15. Koso-Thomas, O. A.: 1995, 'Circumcision: Female circumcision', in W. T. Reich (editor-in-chiet), Encyclopedia ofBioethics, 2nd ed., Simon & Schuster-Macmillan, New York, pp. 382-387. 16. Kouba,L. J., and Muasher, J.: 1985, Temale circumcision in Africa: An overview', African Studies Review 28, 95-109. 17. Lightfoot-Klein, H.: 1989, Prisoners of Ritual: An Odyssey into Female Genital Circumcision in Africa, Haworth, New York, NY. 18. Ntiri, D. W.: 1993, 'Circumcision and health among rural women of southern Somalia as part of a family life survey', Health Care for Women International 14, 215-216. 19. Ogiamien, T. B. E.: 1988, 'A legal framework to eradicate female circumcision', Medicine, Science and the Law 28, 115-119. 20. Ozumba, B. C: 1992, 'Acquired Gynetresia in Eastern Nigeria', InternationalJournal ofGynecology and Obstetrics 37, 105-109. 21. Rawls, J.: 1993, Political Liberalism, Columbia University Press, New York, p. 1. 22. Rushwan, H.: 1990, 'Female circumcision', World Health, April-May, 24-25. 23. Scheper-Hughes, N.: 1991, 'Virgin territory: The male discovery of the clitoris', Medical Anthropology Quarterly 5,25-28. 24. Sherwin, S.: 1992, No Longer Patient: Feminist Ethics and Health Care, Temple University Press, PA. 25. Shweder, R.: 1990, 'Ethical relativism: Is there a defensible version?' Ethos 18, 205-218. 26. Sober, E.: 1991, Core Questions in Philosophy, Macmillan, New York, NY. 27. Thompson, J.: 1989, 'Torture by tradition', Nursing Times 85, 17-18. 28. Walker, A., and Parmar, P.: 1993, Warrior Marks: Female Genital Mutilation and the Sexual Blinding of Women, Harcourt Brace, New York, NY. 29. Williams, B.: 1985, Ethics and the Limits of Philosophy, Harvard University Press Cambridge, MA. 30. World Health Organization: 1991, Female Genital Mutilation, Geneva. 31. World Health Organization: 1992, International Journal of Gynecology and Obstetrics 11, 2, 149. 32. World Health Organization: 1993, Press release WHA/10. International Planned Parenthood Federation. Statement on Female Genital Mutilation, Developed by IPPF International Medical Advisory Panel, IPPF, London, U. K.

This page intentionally left blank

[11]

Bodily Integrity and the Surgical Management of Intersex Emily Grabham University of Kent

Abstract Surgeries inevitably raise questions of bodily integrity: how the post-surgical body reframes (or does not reframe) its experiences of functionality to incorporate new features. Nevertheless, when we try to define or delimit the concept of bodily integrity, it becomes increasingly important to think about how the physical and social unease caused by some forms of surgeries sits alongside the more transformative potential of surgical bodily modification. This article focuses on aesthetic genital surgeries on infants with disorders of sex development (DSD, previously termed 'intersex' conditions). Using the work of Pierre Bourdieu and Elizabeth Freeman on time, bodies and 'chrononormativity', this article excavates not only the temporalities that produce what I would term 'chrono-abnormalities' of sex development, but also the temporalized medical responses, including surgeries, which retrieve 'abnormal' bodies into more normative time-lines. My conclusion is that when DSD-affected individuals experience aesthetic genital surgeries as painful and full of social unease this is not necessarily because the pre-surgical body was the 'natural', 'whole' or 'intact' body prior to surgery. Instead, it is because these surgeries interrupt what Bourdieu would term a sense of corporeal 'immersion into the forthcoming'; an immersion which, in his theory of time as social action, is intimately linked with social power and possibilities. Keywords bodily integrity, Bourdieu, chrononormativity, Freeman, intersex, prosthesis, surgery, temporality, time

Elizabeth Freeman recently wrote that 'temporality is a mode of implantation through which institutional forces come to seem like somatic facts' (2007: 160). Freeman's work provides a useful intervention into what is, by now, a significant body of scholarship on the Corresponding author: Emily Grabham Email: [email protected] http://www.sagepub.net/tcs/

298

The Right to Bodily Integrity

2

Body & Society 18(2)

social and cultural dynamics of time (see, for example, Adam, 1998, 2002, 2003; Funke and Davies, 2011; May and Thrift, 2001; Szerszynski, 2001). In Freeman's opinion, temporal mechanisms are central to the operation of biopolitics in the contemporary era. As such, it is necessary to trace which temporalities become socially and politically significant to the management of bodies as well as populations (Freeman, 2005). Freeman's recent book Time Binds: Queer Temporalities, Queer Histories (2010) provides further elaboration of her concept of 'chrononormativity', which describes the re-embedding of dominant temporal frames such as the life course, the time of the home and hearth, and/or the time of reproduction through social structures and power relations. Further than that, however, it also provides a set of critical tools to begin a political analysis of time's normative processes: Manipulations of time convert historically specific regimes of asymmetrical power into seemingly ordinary bodily tempos and routines, which in turn organize the value and meaning of time. (Freeman, 2010: 3)

Freeman's arguments highlight a conundrum within social theories of embodiment: how to account for time's socialized relationship with corporeality, and, specifically, its relationship to bodily change. My current research similarly engages with socio-legal questions around time, legal regulation and the body, which often analyze social construction/s of surgery (for example, the use of discourses of permanence around gender transitions in the Gender Recognition Act (Grabham, 2010)). This article, however, uses interdisciplinary perspectives on the body to intervene in a set of slightly different questions about time and corporeal regulation. For example, how are medical interventions experienced, both temporally and socially? How do medical techniques and surgeries, as institutional practices, interact with organic time-lines and temporalities, such as ageing or physical development? What do these temporalized interactions mean for those developing ethical responses to surgeries and other forms of medical intervention? I analyse these questions by focusing on the embodied effects of aesthetic genital surgeries on infants with 'disorders of sex development'

The Right to Bodily Integrity Grabham

299 3

('DSD'). Such disorders were previously termed 'intersex' conditions, but in a move toward productive engagement with medical practitioners, activists have begun using the term DSD, and this article reflects that shift. The core assertion of this piece is that while all surgeries are transformative in one way or another, an expanded idea of bodily temporalities is needed to account for the potentially more variable social and corporeal effects of surgeries, and of infant aesthetic genital surgeries in particular. Such an analysis will hopefully assist ongoing interdisciplinary research on the ways in which legal regulation constructs and uses embodied time-lines, and contribute to debates in the sociology of embodiment on the productive interconnections between time, corporeality, bodily integrity and surgeries. Surgeries inevitably raise questions of bodily integrity: how the post-surgical body reframes (or does not reframe) its experiences of functionality to incorporate new features. As a recent special issue of this journal indicates, social theories of bodily integrity provide a rich array of perspectives on the lived experience of corporeal change, medicalized or otherwise. A key insight of these perspectives is that a propertied or sovereigntist understanding of embodiment as the subject's ownership and determination of the soma is often usefully surpassed, or augmented, by other theoretical imaginings of embodied selfhood, such as ideas of bio-social entanglements between cultural, social and technical processes (Blackman, 2010). These ideas challenge not only individualized understandings of embodied becomings and corporeal subjectivity, they also increasingly blur our understandings of the conceptual and material boundaries between bodies themselves. As Aryn Martin (2010) shows, for example, scientific and social theories about microchimerism and the survival of fetal cells in women's bodies after pregnancy are reconceptualizing what the concept of bodily integrity means. Bodily integrity might just as well therefore mean functional cohesion or cellular coexistence as much as it evokes concepts of autonomous personhood. Yet moving towards more socialized understandings of bodily integrity still requires theorizing embodied selfhood. In a recent article, Jenny Slatman and Guy Widdershoven (2010) investigate how hand transplant surgery impacts on bodily integrity. They analyse the experience of Clint Hallam, whose 'new' hand felt entirely strange to him and who eventually required a re-amputation,

300

The Right to Bodily Integrity 4

Body & Society 18(2)

alongside the experience of Denis Chatelier, who incorporated his two new transplanted hands into a concept of 'self. Through contrasting stories of'successful' and 'unsuccessful' transplants within a phenomenological-narrative approach to bodily integrity, Slatman and Widdershoven reach the conclusion that 'normalizing' interventions are not always justified because they might violate, instead of complete, a person's sense of bodily integrity (2010: 87). In other words, surgeries that are pursued with the aim of re-establishing wholeness can, paradoxically, disturb a person's already-existing phenomenological construction of integrity. In the light of Vivian Sobchak's innovative autobiographical/phenomenological analysis of her own experiences of prosthetic leg surgery, it should not necessarily be surprising, as a matter of bodily integrity, that surgeries might have such varying results and ethical implications. As Sobchak puts it: I primarily sense my leg as an active, quasi-absent 'part' of my whole body. That is, unless there is an occasional prosthetic problem which provokes a sense of irritation at the alienated body-object that I 'have' rather than transparently and intimately 'am' — I do not focus on or feel my leg as 'some thing'. (2010: 62)

What this indicates is that questions surrounding the viability or desirability of prosthetic and aesthetic surgeries are not determined by the very fact of experience of the surgery itself, but rather by a person's ongoing, and socially experienced, construction of bodily integrity. Nevertheless, when we try to define or delimit the concept of bodily integrity, it becomes increasingly important to think about processes of transformation, whether they are experienced as normatively 'creative' or 'destructive'. Shildrick put it well when she states that: the issue to hand is not simply that of bodily modification where a certain obeisance to corporeal integrity remains, but that of the insistent potential of radically different modes of embodiment, regardless of whether such transformation is intentional or otherwise. (2010: 11)

As Shildrick indicates, critical theories of embodiment often position surgeries as potentially generative, expanding bodily capacities and possibilities through engagement with non-organic objects and

The Right to Bodily Integrity Grabham

301 5

materials and through new aesthetic forms (Davis, 1995,2002; Smith and Morra, 2006; Sullivan, 2009b). Nikki Sullivan also emphasizes the importance of understanding the 'chiasmic interdependence of soma and techne: of bodily-being (or corporealities) as always already technologized and technologies as always already enfleshed' (2009b: 314). This approach to the body in the world is characteristic of the emerging 'somatechnics' movement, which investigates the mutuality of corporeality, discourse and technologies (medical, cultural) in a non-binarized and open-ended way (see for example MacKenzie, 2009; Osuri, 2009; Sullivan, 2006). In these scholarly, activist and cultural accounts, practices of aesthetic and prosthetic surgeries, body modification and amputation (see further Sullivan, 2009b) resonate as much with constructions of bodily becoming, improvement, confidence, intention and subversion as they do with (mainstream) normativity, regulation and corporeal discipline.1 Ideas of proliferation and linear or non-linear development are therefore fairly common to social analyses of surgical alterations. These ideas bring with them the broad proposition that surgeries and new forms of intervention might, in some incarnations, be generative; that these modifications might shape or govern new forms of belonging and becoming. Nevertheless, many surgeries, such as the hand transplant surgeries analysed by Slatman and Widdershoven, fail to hold out such possibilities for extension and development; they cause pain or they interrupt a sense of ease and immersion in social life. It is this question of how to account for the physical and social unease alongside the potential of surgical bodily modification that the present article addresses. Here, the focus is on aesthetic genital surgeries on infants with DSD. Surgeries to normalize 'atypical' genitalia on infants diagnosed with DSD have come under a huge amount of scrutiny in recent years, as activists and scholars have challenged the practice of operating on otherwise 'healthy' tissue to produce normative aesthetic results while often compromising sensation and causing ongoing problems (for example Holmes, 2002; Kessler, 1998). Intersex activism has forged new relationships with clinical practitioners, with one organization (the Accord Alliance) adopting the term 'disorders of sex development' to describe what were previously termed 'intersex' conditions (Dreger and Herndon, 2009). An increasing level of academic work has also

302

The Right to Bodily Integrity 6

Body & Society 18(2)

focused on medico-cultural understandings of DSD (Morland, 2005a), the racialized and sexualized representation of genitals (Fox and Thomson, 2009; Njambi, 2009), familial decision-making dynamics (Murray, 2009) and the relationship of intersex activism to broader sexual citizenship claims (Grabham, 2007) and to queer theory (Morland, 2009). Scholars and activists working on medical and social responses to DSD show that concepts of 'harm', 'consent' and 'injustice' are illsuited to the complex ethical problems posed by DSD as a lived, and medically mediated, experience (see in particular, Morland, 2005b, 2008). As Iain Morland puts it: 'intersex management becomes discernible as an ethical problem precisely when the distance collapses between correcting intersex and living with it - when one finds oneself living with the medical correction of intersex variations' (2008: 429). It is this collapse between the correction and the lived experience, between the aesthetic genital surgeries and their ongoing effects, that makes theories of bodily integrity potentially so useful for understanding the social context of DSD surgeries. However, many of the surgical effects in this context also impact on ideas of lived temporality: expanded or restricted social horizons, different interpretations of pain ('restorative' as opposed to 'damaging'), for example. My argument, therefore, is that understanding the social and ethical effects of surgeries requires addressing the relationship between corporeality and temporality. In other words, surgeries, and their effects on bodily integrity, can and should be theorized as temporal phenomena, or at least as processes heavily influenced by ideas of time. Using Pierre Bourdieu's theory of time as social action, I investigate how the socialized body unfolds through surgical technologies, and how particular ideas of temporality support and sustain the surgical extension (or manipulation) of DSD-affected bodies into new forms and shapes. Bourdieu's work is particularly useful in this context because it shows how embodied social agents create time through their engagement with the social field and through their empowered relationship to the 'forthcoming' (Bourdieu, 1990, 2000). As such, Bourdieu provides an embedded, intensely corporeal sociological account of the development of what Freeman would term 'chrononormativity'. In this article, I use Bourdieu's work to contextualize theories of bodily integrity and connect them with

The Right to Bodily Integrity Grabham

303 7

work on the sociology of time, in order to provide fresh perspectives on the effects and implications of aesthetic surgeries on infants with DSD. Infant aesthetic genital surgeries approximate what Morland (2005a) has termed 'nostalgic genitalia' - normative ideas about ideal male and female genitals. Yet the temporal presuppositions, timely mishaps and developmental teleologies that support these surgeries are less often subjected to scrutiny. Bourdieu's work provides us with some of the means to begin this analysis. In the first section of the article, I introduce two medical temporalities which exert effects on DSD-affected bodies: the cascading time of sex development, and the time of 'repair' and 'retrieval'. The second section picks up on the social consequences of these productive temporal narratives, using Bourdieu's work on time to re-centre the relationship between the lived experience of aesthetic genital surgery on the one hand, and agents' engagement with the social world on the other. In sections three and four I introduce the concept of social prosthesis as a means of linking Bourdieu's concern with social time to more recent theoretical work on the generative possibilities of corporeal modifications, and therefore avoid reducing surgeries to 'harm'. I conclude by arguing that putting surgeries within Bourdieu's theory of time allows an analysis of how infant aesthetic genital surgeries interrupt particular corporeal forthcomings, with varying effects on patients' lived experience of social ease. This temporalized understanding of surgeries brings with it first, new perspectives on the ethics of altering infant genitalia for aesthetic reasons and, second, a wider range of perspectives on the social experience of body modifications. Medical Temporalities: Cascading Time and the Time of Repair

Medical discourse and practice operates, in general, with a number of temporal assumptions. These assumptions go to the heart of how to diagnose abnormalities on the one hand, and what to do about those abnormalities on the other. As such, diagnostic and treatment-related temporal assumptions can be characterized as forms of medicalized chrononormativity, to adopt Freeman's terminology. The aim of this first section is to trace the embodied effects of two clusters of temporal norms that influence medical attitudes to DSD-affected

304

The Right to Bodily Integrity

8

Body & Society 18(2)

subjects in particular. First are those norms which constitute the cascading time of generation, development and 'abnormalities'. These ideas produce what Freeman would call 'seemingly ordinary bodily tempos' (2010: 3), from which DSD-affected bodies are thought to diverge. Second are the norms which explain and justify particular medical strategies, such as the performing of aesthetic genital surgeries on infants. I have characterized these norms, collectively, as the time of retrieval, or the time of medicalized becomings. In other words, the distinction in this section is between temporalities which construct sexed chrononormativity, or chrono-abnormalities, in the body, and those temporalities which support surgical interventions into embodied chrono-abnormalities. Cascading Time: The Construction of Chrono-abnormalities

In the first 'type' of time, 'cascading' generation or development, sex is produced through a sequencing effect, where hormonal, gonadal and morphological stages follow on from each other. The (heavily abridged) medical narrative is that chromosomal sex determines the hormones which, in utero, lead to gonadal development (the growth of ovaries and testes), duct differentiation (the growth of spermatic ducts or fallopian tubes and uterus) and genital development (for females, clitoris, labia and vagina and for males, penis and scrotum). Mobilizations of this type of time can invoke normative ('passive' ovaries, for example, and 'masculine' testosterone: see further Fausto-Sterling, 2000) or anti-normative concepts of gender and sex roles, and they often use a mixture. Vernon Rosario (2009), for example, critiques representations of sex development that pose the SRY gene as the dominant gene that switches otherwise ovarian tissue to testicular tissue. He argues that these journalistic and medical stories are anthropomorphic, employing, as they do, tropes of 'ovarian fatalism' and 'Y-chromosomal pride', the logic of which can be traced back to Aristotle's positioning of the male as active and the female as matter (2009: 269, 273). In the more normative and binaristic stories, cascading time in the development of children with DSD happens outlandishly or excessively, into the 'wrong' direction, producing sex-related outcomes that do not match a 'typical' morphology. This is the time of aberrance: bodies that could have flourished and unfolded in the

The Right to Bodily Integrity Grabham

305 9

'appropriate' manner are perceived instead to have been skewed or have gone awry, developed into 'unrecognizable', 'strange' or 'disordered' patterns. It is also a problem of disturbed sequencing: the testosterone has not had the desired effect; the gonads do not produce the required hormones; and therefore the imagined developmental time-lines cannot happen. And it is a problem of temporal splitting, as if time has divided at a certain point and left these bodies developing along a path (the 'wrong path') that they did not deserve. Within narratives that are less attached to normative (specifically hetero-normative) stories of development, temporal splitting is represented in terms of 'branching' and 'pathways', but it has similar discursive effects. The Toronto Hospital for Sick Children (THSC), for example, has produced an educational tool on sex development for its website which avoids gendered language, as well as the language of medical 'abnormalities' in DSD-affected children, presumably reflecting a shift among progressive medical practitioners and carers to a more open-ended and non-judgemental attitude to sexual and bodily diversity (THSC, 2009). Visitors to the site are directed initially to a tab entitled 'Sex Development' featuring an animated picture of a growing plant, with the wording 'All babies grow toward the light' at one side. As the visitor clicks on the tabs ('next' and 'back'), the wording explains that other babies 'branch off and take a different path', growing, as they do, with uro-genital conditions that make them look different from other children and require medical care (THSC, 2009). Within 'normal' cascading stories of sex development, the growing fetus reaches a number of stages, or branches, at which different pathways meet. Then, according to factors influenced by chromosomes, hormones, as well as the body's ability to respond to hormones, the body unfolds into different shapes or is driven to particular sex outcomes. It is not necessarily the content of the various stages that is important here: rather the chronological, sequential nature of the corporeal time-line is what is at stake. Navigating the THSC website reveals that, despite pedagogical attempts to neutralize the sex/gender language, it is the temporal norms of sequenced growth, along with their sequenced representation through 'next' and 'back' tabs, which re-introduces binaristic models of 'active' male and 'passive' female development.2 Within the information for gonadal development, for example, visitors can learn that if the fetus has a Y chromosome with the SRY

306

The Right to Bodily Integrity 10

Body & Society 18(2)

gene at the stage of gonadal development, then the gonads produce a protein called testis-determining factor (TDF), which causes otherwise indifferent gonads to develop into testes. If, however, there is 'no Y chromosome' then the gonads develop into ovaries. Likewise, within the information about duct differentiation, visitors learn that fetuses of up to six weeks of age contain both Miillerian and Wollfian ducts. In male fetuses at the stage of duct differentiation, the testes (1) make a hormone called Miillerian Inhibiting Substance (MIS) which causes the Miillerian ducts to disappear, and (2) make the hormone testosterone, which causes the Wollfian ducts to grow into spermatic ducts. The story, once again, is simpler for female fetuses: there is no testosterone so the Wollfian ducts disappear. Both examples reveal Aristotelian logic: the male fetus develops through its sequential stages 'because of certain factors (Y chromosome, testes, testosterone) and the female fetus develops through its stages 'without' those very same factors (without the Y chromosome, without testosterone) (see further, Rosario, 2009: 273). As Rosario puts it, this logic takes female sexual development to be the result of a 'genetic deficit', which positions the ovary to be a 'default organ requiring no particular genetic machinery worthy of investigation' (2009: 273). (By contrast, recent advances in genetics research have fundamentally undermined the idea that the Y chromosome, on its own, determines male sex (2009: 274).)3 The normative sex development teleology (the causation model) begins with the Y chromosome and follows it through to testes, testosterone, the morphology of the penis and the 'natural', male, outcome. It does so because of, not merely alongside, its chronological character: the number of weeks after conception, the stages, the deciding moments, which themselves trigger questions of presence and lack, this path or that. Even in relatively progressive representations, 'typical' female development (the inaction model) represents an alternative, if analogous, time-line to the teleology of the Y chromosome and its apparently associated effects. Here, the XX fetus does not generate testosterone and therefore does not develop testes. Its Wolffian ducts do not grow - they disappear, and the female genital area does not develop into scrotum and penis. But Aristotelian logic also operates with temporal assumptions. In these representations of the timely development of normally sexed male and female fetuses, the female fetus is caught in an absence

The Right to Bodily Integrity Grabham

307 11

of action, a resignation or lack of initiative, from which its morphology and specifically its genital appearance ensues. In this way, positioning female chromosomal and hormonal development factors within a social analysis of time reveals these female characteristics to be (supposedly) relatively disempowered social actors in temporal narratives of sex development. This is perhaps the reason why clinicians regard so-called 'virilized' female genitals - large clitorises for example - with such concern. A large clitoris signifies an excess of time and action within an overarching narrative of, as Rosario puts it, female fatalism and inaction. By contrast, a 'severe' case of hypospadias signifies a lack of time where the expectation is of dynamic and timely male development: premature or interrupted development during the phase in utero when the labio-scrotal folds (as the THSC puts it) would otherwise 'zip up' to form the penile urethra (THSC, 2009). If even the 'normal' male/female developmental binary is overlaid with the cascading cause and effect temporality of the Y chromosome/testosterone matrix, then the wide array of alternative chromosomal and hormonal combinations that make up the classification 'disorders of sex development' are reinforced as untimely at every stage. This is borne out by the THSC's educational tools for two other intersex 'conditions': androgen insensitivity syndrome (AIS) and 5-alpha reductase deficiency (5-ARD). The tool describes AIS and 5-ARD as conditions in which a person with the chromosomal make-up 46 XY (usually classified as male) does not respond to masculinizing androgens produced mainly in the testes (THSC, 2009). People with partial or complete AIS have external genitals that look either completely female (complete AIS) or 'not exactly like typical female or typically male genitals' (partial AIS and some cases of 5-ARD) (THSC, 2009). Under the next section, 'How Androgens Work', visitors are informed that androgens (testosterone and dihydrotestosterone) are needed for the development of male genital anatomy. In 'The Androgen Receptor' section, visitors are then told (again with tabs 'next' and 'back') that testosterone usually binds to an androgen receptor in cells, which activates specific genes responsible for male sex development. If the androgen receptor does not work because of a 'genetic mutation' then the testosterone cannot have its usual effects and the unbound androgen will turn into estrogen, 'usually thought of

308

The Right to Bodily Integrity

12

Body & Soc/ety 18(2)

as a "female" hormone' (THSC, 2009). In fetuses with complete androgen insensitivity syndrome, the Wolffian duct cells degenerate because they cannot respond to testosterone. The testes remain inside the body and the lower part of the vagina forms separately, resulting in a short 'blind-ending' vagina that forms because the testosterone is not present to stop it (THSC, 2009). The cascading temporality of the Y chromosome/testosterone matrix again influences the normative teleology of sex development. But in this case, instead of absence (the lack of testosterone), DSD morphology in the case of complete AIS is explained through tropes of escape (the vagina that develops because testosterone is not present) and insensitivity, or the androgen receptor's lack of feeling, tactility and response to testosterone. The developing AIS fetus (and its chromosomal and hormonal make-up) is seen to act on time to a certain extent, but the acting is incomplete, interrupted or diverted, as is the case with the developing fetus with hypospadias. As a form of generation or growth, DSD development is therefore positioned as having an ambivalent relation to the future. Medicalized Becomings: The Treatment of Chrono-abnormalities

If chrononormativity influences narratives of sex development, then it also has a part to play in aesthetic surgical treatments for infants with DSD. The medical response to these apparently ambivalent futures is one of taking back or reclaiming DSD-affected bodies into the time of the (constructed) sex binary, where morphology fits social expectation. Clinicians' talk of starting DSD patients out 'on the right path' (Roen, 2008: 50) references unease with what is seen as a temporal splitting on the part of the developing fetus in utero. Through these narratives, surgery is positioned as retrieval, cutting away unintended growth and refashioning developmental time-lines. There are some common temporal themes to surgeons' stories about these surgeries. First is the theme of incrementalism. As Katrina Roen points out, challenges to the conceptual underpinnings of aesthetic genital surgery, when considered at all, are considered 'one body part at a time' (2008: 52). Through a form of sequencing, this distances the reasoning applied to one body part from the reasoning applied to another. The second prevalent temporal theme is of 'follow-up' surgery or associated 'repair' procedures. Genital

The Right to Bodily Integrity Grabham

309 13

surgeries on DSD-affected infants and children cause many types of ongoing complications - urinary tract infections, the requirement for repeated catheterizations, the necessity of dilating a constructed vagina, 'corrective' clitoral or vaginal procedures that require further 'correction', sometimes resulting in numerous operations over a 10or 20-year period (see Kessler, 1998). By its very nature, surgery on children is extremely likely to require 'follow-up' because of physical growth as well as the emergence of new techniques, although, as Roen (2008: 55-6) points out, the type of follow-up is dependent on the type of surgery initially undertaken. The concept of follow-up, like the concept of repair, implies a therapeutic return or going back, where the initial rationale for surgery is still taken to be valid and justifiable. This is the idea of repair as augmentation: with each return, the procedure gets better and the surgery more accurate and beneficial. Going back is a linear reversal or detour, the object of which is a moment in the past which is temporally distinct from present action. As such, while it operates with a level of disjunctive, going back does not challenge the teleology and imagined end-point of surgically enabled sex development. In fact, locating the problem in the past enables what would otherwise be classed as 'new' procedures and provides a justifying context for the associated risks of those procedures. The final concept, for these purposes, is the concept of the surgical 'learning curve', which aligns the surgeon's own teleology of improvement with the surgical treatment of intersex agents. In her survey of clinical publications on intersex, Roen (2008: 58) points out that surgeons performing hypospadias surgery, for example, accept a fairly long 'learning curve', during which surgeons operate on intersex agents with a less than optimal standard of technical competence. Like the concept of 'repair', the learning curve is justified by reference to a temporally distinct moment, but whereas 'repair' is focused on the past, the justification for the 'learning curve' is found in the future (with what are hoped to be improved treatments). In the context of hypospadias, for example, the effect of the learning curve is that a technically unresolved or unfinished procedure (in the surgeon's own time-line of development) is performed on an intersex agent in order to effect the child's medicalized sex becoming. While aiming at the future, the learning curve allows relatively unpracticed procedures to take place in the present, which may later become the

310

The Right to Bodily Integrity 14

Body & Society 18(2)

object of 'repair' surgeries. In this way, the temporal fixing points shift between constructed 'past', 'present' and 'future' action and problems, allowing clinicians to justify surgery on the basis of temporal location. Corporeal Coincidences: Temporalizing Bodily Integrity The temporalities contained in medical narratives of DSD - the cascading temporality of the Y chromosome/testosterone matrix, with its associated splitting and divergent 'pathways', and the medicalized becomings achieved through 'repair', 'follow-up', and the 'learning curve' - therefore have a variety of effects. Overall, Freeman's concept of chrononormativity allows us to trace the 'folding in' functions of these temporalities on DSD infants and children on a larger social scale. Yet, I would argue, viewing these molecular, chromosomal and morphological temporalities through a Bourdieusian framework allows a slightly altered, but extremely useful, scale of analysis, one in which we can trace incremental operations of power at the level of the socialized body itself. This is merely a shift in focus, because Freeman's own work has been influenced by Bourdieu to a certain degree (see Freeman, 2010). But the reason for performing such a shift is that, in effect, it allows us to bridge Freeman's concept of social chrononormativity on the one hand, and theories of bodily integrity on the other. In other words, this analysis provides a means of reading time into the socialized production of the 'integrated' body. As readers will be aware, Bourdieu used the concepts of 'habitus' and 'field' to describe and analyse agency, social action and social systems. When there is a correspondence between habitus and field, between the structures and systems within the field and the agent's embodied dispositions, then, Bourdieu argued, the agent encounters the world as meaningful and full of possibility. Bourdieu's idea of temporalization is encapsulated in his idea that social agents create time through social practice, instead of merely existing in time, as the metaphysical account would suggest (Bourdieu, 2000: 206). Time is an integral aspect of social agents' experiences of power in the world, because a sense of time, or a 'practical anticipation of the forthcoming', fundamentally mediates her relationship with the world. The embodied habitus (or agent) produces time through

The Right to Bodily Integrity Grabham

311 15

the many ways in which habitus orients itself, temporally, in relation to its own future action in the social field and in relation to what the social field may deliver. This analysis contains many similarities to discourses of bodily integrity, to the extent that experiences of embodied ease, synchronicity and even ideas of corporeal autonomy, are constructed in productive tension with the social world. What Bourdieu's theories can offer in relation to these often phenomenological accounts, however, is a specifically temporalized account of bodily transformation, which nevertheless also provides a means of analysing socialcorporeal dynamics on a small scale for their varying social effects. Understanding bodily integrity through a Bourdieusian notion of time allows us to do justice to the shift away from autonomy and sovereignty in recent work toward understanding the bio-social interconnections that experiences of embodiment and corporeal change entail. However, it also allows this analysis to take place without prioritizing one bodily state (for example, pre-surgery or precorporeal change) over another. For example, quite predictably, the cascading time of sex development can be seen as a generalized tendency or norm within the field, which creates social constructions of morphological abnormalities, and which justifies the practice of aesthetic genital surgeries on children. These surgeries, which are variously understood as 'repair' or 'retrieval', could be understood to 'rupture' agents' experience of being immersed in the forthcoming, their temporalized sense of bodily integrity. Indeed, it could be argued that it is an orientation to our present and future corporeal state that allows our bodies to be felt as broadly 'integrated' over time. If then, as Bourdieu states, time is only really experienced in the rupture of expectations and chances (2000: 208), because otherwise action in the field is felt as immersion, it follows that experiences of infant genital surgeries could be defined as temporal ruptures, or disjunctives, between bodily anticipation of the forthcoming (this body, as it is now, or a sense of bodily integrity) and what medical practitioners deliver on and through the body (modification, excision, which might, as Slatman and Widdershoven point out, not produce feelings of ease at all but instead, dis-integration (Slatman and Widdershoven, 2010)). The pain, embarrassment and other repeated problems associated with infant aesthetic genital surgeries interrupt patients' sense of being

312

The Right to Bodily Integrity

16

Body&Soc/ety 18(2)

engaged with and oriented to the social world, and hence also interrupt their ongoing temporalized experiences of corporeal empowerment. However, if the norms that circulate within the social field suggest that a range of developmental teleologies exist and that aesthetically varying genitals always fit within this range, then there are further alternative possibilities for aesthetic surgeries. (Arguably, progressive scientists and medical practitioners are already attempting to work with such an analysis, despite the problems outlined above.) Aesthetic genital surgeries could either be experienced as a means of opening out the embodied habitus to new sexed futures. Or, if carried out in less empowered circumstances, these surgeries interrupt agents' sense of immersion into the forthcoming. It is not, therefore, that aesthetic genital surgeries are always problematic in the context of DSD diagnoses. Instead, what causes difficulties is the medicalized over-identification of ideas of retrieval and repair with ideas of becoming. This over-identification leads, through the performing of aesthetic genital surgeries, to an interruption in DSD-affected agents' sense of becoming or immersion in the social world: their temporal experience of social engagement and empowerment. Understanding DSD genital surgeries as temporal interruptions operates with the foundational presumption that the trajectories that all bodies pursue, developmentally and culturally, are characterized and lived through social experiences of time, and that these experiences of time may shift in gradual or sudden ways, depending on bodily morphology or cultural interventions. Surgeries on the body can just as well interrupt a sense of immersion in the forthcoming an empowered sense of social ease - as much as they might smooth the fit between embodied being and social expectations. The concern with this analysis, however, is the alignment of interruption per se with normative concepts of 'harm' and 'damage'. Rupture normally implies breakage; disjuncture normally implies dissonance. Even if it is accepted that genital surgeries cause temporal interruptions, the implication here might be that these are interruptions of otherwise happy and healthy corporeal time-lines. A huge range of recent work, on the other hand, investigates the vissicitudes of agency, consent and subjectivity in relation to different types of surgery, whether aesthetic, prosthetic or otherwise (see Braun, 2009; Davis, 1995, 2002; Smith and Morra, 2006; Sullivan, 2004). If, as already indicated, the body is malleable and plastic, open to proliferating change through

The Right to Bodily Integrity Grabham

313 17

surgeries, then the changed post-surgical body cannot always be aligned with damage but can often also be understood in terms of generation (cf. Sullivan, 2009a). For this reason, it might be useful to characterize all surgeries, as temporal interruptions. Within such a conceptual framework, temporal interruptions can be analysed for their social effects, positive or negative, generative or constraining. However, there are two problems with this analysis. The first is that within Bourdieu's analysis there is a very clear distinction between being immersed and therefore socially empowered, on the one hand, and experiencing a sense of social disempowerment, on the other. Some surgeries ease a person's experience of immersion into the social field, and so they cannot, in this analysis, be termed 'interruptions' as Bourdieu would have it. The second problem is that characterizing all surgeries as interruptions implies that bodily time-lines are somehow independent of technological engagement unless and until they are 'operated on'. One response to these problems might be (1) to retain the idea that some surgeries, when carried out in particular conditions, 'interrupt' an agent's sense of immersion into the forthcoming, but also (2) to de-naturalize the very idea of a corporeal time-line or teleology, thereby undermining the idea that surgeries interfere in 'natural' corporeal time-lines. Surgeries as Social Prosthesis

De-naturalizing an idea of the natural, pre-surgical corporeal timeline requires an analysis of how surgeries interact with particular bodily trajectories. Whilst Bourdieu's theory of time provides useful frameworks for thinking about the socialized teleologies that shape surgeries, nevertheless his work is more concerned with how social structures (such as class) exert themselves durably on the body than it is with theorizing the corporeal proliferation that surgeries bring about, and the social effects of such proliferation. What is needed, therefore, is a conceptual basis for understanding corporeal generation and relatively rapid transformation within the embodied habitus as it applies to surgeries. The concept of social prosthesis seems to provide one route into such an analysis. There has been a considerable amount of commentary, recently, on how the concept of prosthesis has been deployed, and, in some

314

The Right to Bodily Integrity

18

Body & Soc/ety 18(2)

arguments, misused, within social theory (see for example Neuman, 2010; Smith and Morra, 2006). Elizabeth Grosz (2005) argues that prostheses, more generally defined, are characteristic of the body's tendencies to open up its sphere of potential actions. Far from being a signal of corporeal lack, prostheses indicate the ongoing transformation of the human form in many different respects, including, but not restricted to, the usually cited fitting of prosthetic limbs: Are prostheses an attempt to substitute for and augment the body's organic inabilities? ... Or conversely, should prostheses be understood more in terms of aesthetic reorganization and proliferation, the consequence of an inventiveness that functions beyond and perhaps in defiance of pragmatic need? (Grosz, 2005: 147) Grosz suggests that prostheses are possibilities that the body can make real through incorporation, transforming both body and object in the process (2005: 148). Extending this analysis, Grosz (2005: 148) questions whether clothing, food and architecture, as prostheses, accommodate for the body's lack and suggests that they might instead be part of a process of transformative corporeal socialization. Social prosthesis, in Grosz's terms, therefore works temporally; it is a generative orientation to the forthcoming but it is also, as Bourdieu would remind us, intimately linked with socialized possibilities: social time. Prosthesis is always politically and socially charged; it is shaped by social conditions and its effects are felt differently depending on agents' social status. Time as social practice exists within the interplay of habitus and field, within the practice of historically situated and embodied dispositions. For its part, social prosthesis describes the flourishing (however it is normatively defined) that occurs when the sense of the forthcoming fits social structures and effects material (for example, corporeal) change. When there is a coincidence between field and habitus, the extension inherent in social prosthesis (such as surgery) is felt as immersion. When there is not a coincidence between field and habitus, or an empowered relationship between agency and the social world, then prosthesis (such as surgery) can be felt as an interruption into one's sense of the forthcoming, experienced as bodily integrity. However, drawing again on Bourdieu, the effects of prosthetic change - food, architecture, surgeries - are also already part of the embodied habitus or agent at any point in time. This is because they

The Right to Bodily Integrity Grabham

315 19

exist within a range of technological possibilities that are incorporated into the body through constant engagement between the embodied habitus and the social field. The embodied habitus contains within it the possibility of prosthesis because it incorporates aspects of the field that is, the range of technological (including surgical) and intellectual extensions present within the social world. If social practice creates time, then the corporeal temporalities that are produced by the extension and transformation of the body through prosthesis (into the built environment, into food sources, into new corporeal forms through surgeries) should be understood in radically contextualized ways. Furthermore, what links most types of social prosthesis is that they avoid cause-and-effect type temporalities in relation to the body. It is no longer possible to talk about the 'before' of the body and the 'after' of surgery, for example. If surgeries (rapid corporeal transformation) are understood as social prostheses, in Grosz's terms, then they are already part of the social field in which the agent operates. Given the necessary alignment between conditions existing in the field (social attitudes to gender, for example) and the body's dispositions (movements, morphology), surgeries prosthetically emerge in or on the body, with differing temporal, corporeal and political effects, either interrupting or easing the agent's experience of the social world. Prosthetic interruptions do not damage what is already there (the 'before' of the body) but instead produce experiences of social and corporeal un-ease through the socialized practice of time on the body. Strange Times Prosthetic interruptions, for example, can describe the types of genital surgery performed on DSD-affected infants that have long-lasting effects on sensation and form: clitoris reductions, creation of a vagina, treatments for hypospadias. When a DSD-affected child undergoes genital surgery, their experience of the field brings with it restricted or obliterated physical sensation and, in many cases, social unease (Chase, 1998; Holmes, 2000; Kessler, 1998). Activist, and much scholarly work emphasizes that many genital surgeries have effects that close down important other possibilities or orientations to present and future action (Chase, 1998; Holmes, 2002; Kessler, 1998; Morland, 2005a, 2009).

316

The Right to Bodily Integrity

20

Body & Society 18(2)

Iain Morland has already covered the far-reaching teleological effects of these surgeries. 'Technology such as the scalpel', he writes, 'extends the temporal reach of the surgeon's touch' (2009: 300). The surgical touch exists outside of the time of cutting, shaping, re-forming - outside of the simultaneity of surgeon and patient - and persists into the body's futures. That is to say, it extends forward into what is perceived to be a linear forthcoming: the accomplishment of medical intervention is its ability to reiterate continuously its sexing effect, over the course of a patient's life, in the absence of the surgeon [T]he teleology of surgery does not conclude at the time when the patient leaves the operating theatre. Rather, it plots the patient's whole life as a life of unambiguous sexual certainty, from moment to moment, toilet to toilet, lover to lover, and from locker room to locker room ... (Morland, 2005a: 341)

What surgery aims for, and what DSD-affected people are assumed to need, is sexual certainty. However, this iterative effect - or, to quote Morland again, 'act designed never to stop acting' (2005a: 346), does not merely take place through what is accomplished or 'completed' through the surgeon's techniques, but also through the repeated failure of that surgery. The temporal, and physical, economy in which 'nostalgic genitalia' have their effect is one in which, despite surgery's orientation to a linear future, people with a DSD diagnosis experience as a loop of becoming and re-becoming, which is inscribed through surgeries and other 'treatments'. In this sense, prosthetic interruptions are experienced as a form of surgical, and corporeal, circularity and dis-integration or un-ease. Again, Morland, for example, has written that '(t)he surgeon's desensitizing touch makes bodies strange' (2009: 298). The connections between time and strangeness or dissonance are important here. Bourdieu states that '(t)ime ... is really only experienced when the quasi-automatic coincidence between expectations and chances, illusion and lusiones, expectations and the world which is there to fulfil them, is broken' (2000: 208). As we have seen above, genital surgery is one example of a wide range of aesthetic surgeries that take, as their object, the culturally constructed body. That is to say, technologies used on DSD-affected people (including surgeries) are always part of the body's potential forthcoming at any point. The continued appearance and reappearance of the material effects of

The Right to Bodily Integrity Grabham

317 21

nostalgic genitalia on the body is therefore felt as an interruption not because the pre-surgical body without surgery was the 'natural' body, but because nostalgic genitalia interrupt the sense of corporeal immersion into the forthcoming. What makes aesthetic genital surgeries problematic in the context of DSD is not the fact that they are surgeries as such, because surgeries form part of the field of transformation in which the habitus opens up, prosthetically and corporeally, to different futures (following Grosz), but instead that this prosthetic opening up, this coming together of field and habitus, breaches the otherwise comfortable, easy and confident orientation to, and immersion in, the social world. Concluding Remarks

Models of sex development as cascading genetic and chromosomal generation position DSD morphology as an aberrant future or an unintended forthcoming, amenable to retrieval or repair through genital surgeries. In this way, corporeal chronologies have symbolic and material effects on embodied agents and their experiences of bodily integrity. Furthermore, the temporal disjunctives experienced by the recipients of aesthetic genital surgeries are themselves produced and supported by medicalized discourses of becoming. These discourses include concerns about the future of the surgical patient: that she or he will need a noticeably female or male genital structure for healthy psycho-social development; that without surgery the DSD-affected child will be bullied at school or traumatized at the sight of their own genitalia (Roen, 2008: 50). Such discourses also include concerns about puberty, and about setting the child off on 'the right path' in life (2008: 50). However, medicalized discourses of becoming also refer to the medical establishment's chrononormative concepts of sexed becoming, which reach, as we have seen, from understandings of fetal development through theories of childhood to decisions about how to achieve 'normal' adulthood. If the temporal norms that structure medico-cultural understandings of sex development in utero are characterized by the cascading effects of the Y chromosome/testosterone teleology, then post-birth, the story becomes the practitioner's, and here the surgeon's, temporalized story of professionalism and medical accomplishment. Morland's concept of 'nostalgic genitalia' is so forceful because it reminds us that the ideals driving genital surgeries on DSD-affected

318

The Right to Bodily Integrity

22

Body & Soc/ety 18(2)

infants are not merely a mirage; they constitute a form of socialized corporeal proliferation - part of the social's constant engagement with the soma. Nostalgic genitalia cause bodies to be stitched into normative time-lines. Acting together within the social field and also within the embodied habitus, these temporalities achieve prosthetic ruptures on the bodies of intersex agents and force our understandings of bodily integrity into new directions. While, as we have seen, surgeries can be usefully viewed as social prostheses, extending human capabilities and technologies in the habitus, these prosthetic interruptions produce ongoing painful corporeal experiences and social unease for some, if not many, surgical patients. One of the core aims of this article, however, has been to theorize surgeries as productive breaches in embodied time-lines without positioning pre-surgical bodies as 'intact' and post-surgical bodies as 'damaged'. If surgeries exist within the field - within society's technological possibilities - then those possibilities are incorporated into the habitus and into the body's potential forthcomings at any given moment. This, at least, subverts the 'before' and 'after' binary of the pre- and post-surgical body. The key assertion in this article is therefore that power and time are intimately bound up in surgery's social effects. Following Freeman, temporalities are the means by which social and institutional norms of gender become reified on DSD-affected bodies, as 'somatic facts'. To put it more specifically, surgeries produce empowered or disempowered outcomes precisely through their connections with different temporal concepts and trajectories. The ethical effects of surgical procedures are connected with the temporal stories we tell about, and inscribe on, our bodies. Likewise, bodily integrity is about how we understand and negotiate our own corporealized temporalities. Unravelling the ethical dilemmas that surgeries cause is fundamentally, therefore, a process of producing or retracing time. Notes 1. Prosthetic surgeries, as one example, are generally culturally defined at least as useful, if not as entering into a productive, symbiotic and beneficial relationship with 'disabled' agents, where the economic and social conditions exist to make prosthetic surgeries possible or highly adapted to those agents' needs (see further Grabham, 2009; Smith and Morra, 2006). These surgeries,

The Right to Bodily Integrity Grabham

319 23

while causing ruptures in the social and subjective understanding of the 'coherent' body by replacing or extending limbs, are nevertheless culturally endorsed. That is to say, the temporal stutter that surgeries of this type cause, and the more long-term effects, are understood and felt to increase corporeal capacities and social ease. 2. Many thanks to an anonymous reviewer for Body & Society for helping me to clarify this point. 3. Work by feminist biologists, such as Jennifer A. Marshall Graves, has led to a resurgence of interest in the genetics of ovarian development and even to the hypothesis, in some quarters, that ovarian development is the active and not the passive process (which only serves to reverse the binary, not fundamentally undermine it) (Rosario, 2009: 276). References

Accord Alliance (2009) URL (consulted 29 August 2009): http:// www.accordalliance.org/ Adam, B. (1998) Timescapes of Modernity: The Environment and Invisible Hazards. London: Routledge. Adam, B. (2002) 'The Gendered Time Politics of Globalization: Of Shadowlands and Elusive Justice', Feminist Review 70: 3-29. Adam, B. (2003) 'Reflexive Modernization Temporalized', Theory, Culture & Society 20(2): 59-78. Blackman, L. (2010) 'Bodily Integrity', Body & Society 16(3): 1-9. Bourdieu, P. (1990) The Logic of Practice, trans. R. Nice. Cambridge: Polity Press. Bourdieu, P. (2000) Pascalian Meditations, trans. R. Nice. Cambridge: Polity Press. Braun, V. (2009) 'The WomenareDoingItforThemselves',^w^ra//aw Feminist Studies 24(60): 233^49. Chase, C. (1998) 'Hermaphrodites with Attitude: Mapping the Emergence of Intersex Political Activism', GLQ: A Journal of Lesbian and Gay Studies 4(2): 189-211. Davis, K. (1995) Reshaping the Female Body: The Dilemma of Cosmetic Surgery. New York: Routledge. Davis, K. (2002) '"A Dubious Equality": Men, Women and Cosmetic Surgery', Body & Society 8(1): 49-65.

320

The Right to Bodily Integrity

24

Body & Soc/ety 18(2)

Dreger, A.D. and A.M. Herndon (2009) 'Progress and Politics in the Intersex Rights Movement: Feminist Theory in Action', GLQ: A Journal of Lesbian and Gay Studies 15(2): 199-224. Fausto-Sterling, A. (2000) Sexing the Body: Gender Politics and the Construction of Sexuality. New York: Basic Books. Fox, M. and M. Thomson (2009) 'Foreskin is a Feminist Issue', Australian Feminist Studies 24(60): 195-210. Freeman, E. (2005) 'Time Binds, or Erotohistoriography', Social Text 23(3^): 57-68. Freeman, E. (2007) 'Introduction', in special issue on 'Theorizing Queer Temporalities', GLQ: A Journal of Lesbian and Gay Studies 13(2-3): 159-76. Freeman, E. (2010) Time Binds: Queer Temporalities, Queer Histories. Durham, NC: Duke University Press. Funke, J. and B. Davies (eds) (2011) Sex, Gender and Time in Fiction and Culture. London: Palgrave Macmillan. Grabham, E. (2007) 'Citizen Bodies, Intersex Citizenship', Sexualities 10(1): 29-48. Grabham, E. (2009) '"Flagging" the Skin: Corporeal Nationalism and the Properties of Belonging', Body & Society 15(1): 63-82. Grabham, E. (2010) 'Governing Permanence: Trans Subjects, Time, and the Gender Recognition Act', Social & Legal Studies 19(1): 107-26. Grosz, E. (2005) Time Travels: Feminism, Nature, Power. Durham, NC and London: Duke University Press. Holmes, M. (2000) 'Queer Cut Bodies', in J.A. Boone et al. (eds) Queer Frontiers: Millennial Geographies, Genders and Generations. Madison, WI: University of Wisconsin Press. Holmes, M. (2002) 'Rethinking the Meaning and Management of Intersexuality', Sexualities 5(2): 159-80. Kessler, S. (\99$) Lessonsfrom thelntersexed. Piscataway,NJ: Rutgers University Press. Mackenzie, R. (2009) 'Somatechnics of Medico-Legal Taxonomies: Elective Amputation and Transableism', Medical Law Review 16: 1-23. Martin, A. (2010) 'Microchimerism in the Mother(land): Blurring the Borders of Body and Nation', Body & Society 16(3): 23-50. May, J. and N. Thrift (2001) Timespace: Geographies of Temporality. London: Routledge.

The Right to Bodily Integrity Grabham

321 25

Morland, I. (2005a) '"The Glans Opens Like a Book": Writing and Reading the Intersexed Body', Continuum: Journal of Media & Cultural Studies 19(3): 335^8. Morland, I. (2005b) 'The Injustice of Intersex: Feminist Science Studies and the Writing of a Wrong', Studies in Law, Politics, and Society 36: 53-75. Morland, I. (2008) 'Intimate Violations: Intersex and the Ethics of Bodily Integrity', Feminism & Psychology 18(3): 425-30. Morland, I. (2009) 'What Can Queer Theory do for Intersex?', GLQ: A Journal of Lesbian and Gay Studies 15(2): 287-312. Murray, S. (2009) 'Within or Beyond the Binary/Boundary? Intersex Infants and Parental Decisions', Australian Feminist Studies 24(60): 265-74. Neuman, B. (2010) 'Being Prosthetic in the First World War and Weimar Germany', Body & Society 16(3): 93-126. Njambi, W.N. (2009) 'One Vagina to Go: Eve Ensler's Universal Vagina and its Implications for African Women', Australian Feminist Studies 24(60): 167-80. Osuri, G. (2009) 'Media Necropower: Australian Media Reception and the Somatechnics of Mamdouh Habib', borderlands 5(1), URL (consulted February 2012): http://www.borderlands.net.au/ volSno l_2006/osuri_necropower.htm Roen, K. (2008) '"But We Have to Do Something": Surgical "Correction" of Atypical Genitalia', Body & Society 14(1): 47-66. Rosario, V. (2009) 'Quantum Sex: Intersex and the Molecular Deconstruction of Sex', GLQ: A Journal of Lesbian and Gay Studies 15(2): 267-84. Shildrick, M. (2010) 'Some Reflections on the Socio-cultural and Bioscientific Limits of Bodily Integrity', Body & Society 16(3): 11-22. Slatman, J. and G. Widdershoven (2010) 'Hand Transplants and Bodily Integrity', Body & Society 16(3): 69-92. Smith, M. and J. Morra (eds) (2006) The Prosthetic Impulse: From a Posthuman Present to a Biocultural Future. Cambridge, MA: MIT Press. Sobchak, V. (2010) 'Living a "Phantom Limb": On the Phenomenology of Bodily Integrity', Body & Society 16(3): 51-67. Sullivan, N. (2004) '"It's as Plain as the Nose on His Face": Michael Jackson, Modificatory Practices, and the Question of Ethics', Scan

322

The Right to Bodily Integrity

26

Body & Soc/ety 18(2)

Journal 1(3), URL (consulted February 2012): http://scan.net.au/ scan/j ournal/display .php?j ournal_id=44. Sullivan, N. (2006) 'Somatechnics, or Montrosity Unbound', Scan Journal 3(3), URL (consulted February 2012): http://scan.net.au/ scan/journal/display .php?journal_id=83. Sullivan, N. (2009a) 'The Somatechnics of Intersexuality', GLQ: A Journal of Lesbian and Gay Studies 15(2): 313-27. Sullivan, N. (2009b) 'Transsomatechnics and the Matter of Genital "Modifications'", Australian Feminist Studies 24(60): 275-86. Szerszynski, B. (2001) 'Wild Times and Domesticated Times: The Temporalities of Environmental Lifestyles and Polities', Landscape and Urban Planning 61: 181-91. THSC (Toronto Hospital for Sick Children) (2009) 'Sex Development: An Overview', URL (consulted 29 August 2009): http:// www.aboutkidshealth.ca/HowTheBodyWorks/Sex-Development. aspx?articleID=7671&categoryID=XS.

Author biography Emily Grabham is a Senior Lecturer in Law at the University of Kent. Her current research focuses on how concepts of time influence equality law and policy. She is the author of 'Doing Things with Time: Flexibility, Adaptability, and Elasticity in UK Equality Cases' (Canadian Journal of Law & Society, 2012); 'Governing Permanence: Trans Subjects, Time, and the Gender Recognition Act' (Social & Legal Studies, 2011); and 'Dilemmas of Value in Post-industrial Economies: Retrieving Clock Time through the Four-day Work Week?' (Connecticut Law Review, 2010).

[12] Forever Small: The Strange Case of Ashley X EVAFEDERKITTAY

I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child "forever small." The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physicians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and would not grow breasts. In this way she would stay "forever small" and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daughter with severe cognitive impairments.

PRELUDE THE CASE In 2002, the parents of a six-year-old girl with a condition that will require physical care throughout her life, and who had begun to exhibit signs of precocious puberty, requested, and were granted, permission to have high doses of estrogen administered to induce the premature closing of the long-bone epiphyses, thus maintaining the girl's height at 4'5"» The intention was to facilitate her care by keeping her small To reduce the uterine bleeding that accompanies the procedure, as well as the risk of uterine cancer, she underwent a hysterectomy prior to the estrogen treatment. To reduce the risk of breast cancer, of which her family had a history, and to prevent the growth of large

324

The Right to Bodily Integrity

Eva Feder Kittay

611

breasts, also a familial trait, her breast buds were removed. Surgeons also per^ formed an appendectomy as a prophylactic, which was unrelated to the other procedures. Given only this information, most will regard these procedures as ethically problematic, though some will suspend judgment until the condition is specified, Now we add: this girl has severe cognitive disabilities from an unknown cause, static encephalopathy with marked global developmental deficits, ren^ dering her profoundly intellectually limited as well as incapable of mobility, holding up her head, or doing anything at all for herself. Her physicians made this public in a medical journal, referring to the procedures in the title of their article as a "new solution to an old dilemma" (Gunther and Diekema 2006), A near universal response is harder to predict now. Many think that parents who shoulder the burden of care should have great leeway in deciding on the treatment of their disabled child. Others will want to know: Are these caring and conscientious parents? Are there other options? Do the parents have an accurate prognosis and informed expectations? For still others, the procedures seem no less abhorrent because they are performed on a child with severe cognitive and physical disabilities. Here are the remaining facts: This is the notorious case of Ashley, Following the scientific publication announcing the procedures, the case made the media rounds,1 her parents set up a website to tell their story and to promote what they dubbed uthe Ashley Treatment" (henceforth AT) for other children like Ashley, By all accounts and as they appear in the website, her parents, middle^ class and educated professionals, are loving and caring. They want to keep her small because this will permit them to care for her in their home for the longest possible time and allow her to participate in family events and in activities she enjoys, such as going to the beach. They justify the hysterectomy by arguing that their daughter will never be a mother. Without a uterus she will never become pregnant should she become a victim of sexual abuse—and as a woman with disabilities, especially cognitive disabilities, her risk is higher than that of other women. They justify the removal of the breast buds by claiming that large breasts will make the straps that keep her in place in a wheelchair uncomfbtf> able, and will also reduce the likelihood that caretakers will sexualize her. In addition, surgery will guard against the slightly increased possibility of cancer in these sexual organs caused by the higlvdose estrogen treatments. Despite all the criticisms, the parents actively defend and promote AT as a way to care for other "pillow angels," as they call Ashley, The Ashley case reveals views of human embodiment that have important ethical consequences, ones that are lived in the disabled body of a girl who is to remain forever small, I will argue against the acceptability of AT, For an issue as morally complex as this, no one argument is likely to be decisive.

The Right to Bodily Integrity 612

Hypatia

Instead, I rely on the conjunction of four related arguments to make my case. At stake are two questions: Did Ashley's parents, doctors, and the hospital act ethically? Should AT be made available to all parents of children whose prognosis is severe cognitive disability and non-ambulation (SCDN for short) at an age early enough to make AT effective, that is, when they are two to six years of age? The problem, as I diagnose it, is that AT is undertaken with a questionable set of assumptions, and in a context where the best alternative options are hard to come by. Although all acted to provide Ashley the best available care—no villains here—good faith does not guarantee that the actions are in fact caring ones, I may intend to care for a parched plant by watering it, but if, unbeknownst to me, the glass of clear liquid I pour in the plant contains vinegar, not water, most would agree that, despite my good intentions, I have failed to care for it, Ashley's parents surely intended to pour restorative water but, I contend, have poured vinegar instead. Moreover, had the available social sup' ports been ready to hand, the option they conceived of might never have been considered, A TALE OF Two GIRLS AND A MOTHER'S JOURNEY In the face of the extensive criticism directed at Ashley's parents, proponents responded that those who had not walked in their shoes ought not to judge them (Wilfond et al, 2010), Although I cannot presume to have walked in the shoes of Ashley's parents, I have long traveled in a similar pair. My daughter, no longer a child but a woman of forty, is not quite a "pillow angel," She possesses some motor skills. She learned to hold up her head by the age of two years (instead of the typical age, two months). She did learn to walk—at age five after extensive physical therapy—but retained the wide gait of a toddler. For many years, however, as locomotion became too hazardous because of a seizure disorder and scoliosis of the spine, she has used a wheel' chair. Like Ashley, she is very comfortable in bed, but we don't keep her there except to rest. Unlike Ashley, who requires a feeding tube, my daughter Sesha eats regular food (which she delights in), but she can at best finger feed. Like Ashley, she does not toilet herself, speak, or turn herself in bed; she can do no daily tasks of living for herself, and she has no measurable IQ, Like Ashley, she is sweet, loving, and easy to love, A person with Sesha's disposition would easily be called "an angel," regardless of disabilities. Sometimes I wonder if Sesha is a special being sent to us from elsewhere, for there is an impossibleto-articulate sweetness, graciousness, and emotional openness about her— qualities we rarely find in others, I sense from the writings of Ashley's parents that Ashley too has these qualities. Still we try to refrain from referring to Sesha

325

326

The Right to Bodily Integrity

Eva Feder Kittay

613

as "an angel" since that has the unfortunate side effect of edging her out of the human community. To love Sesha as she is, it is of critical importance to us that, unlike an angel, Sesha has a body, and unlike eternal beings, she does age. Especially because it is hard for many to recognize and acknowledge people whose lives are significantly different, we need to reiterate the unqualified humanity of people with serious cognitive disabilities. On first consideration there appears to be a great difference between parents' expectations and hopes for children with cognitive disabilities and those for their other children. As parents we don't expect significantly cognitively disabled children to make us grandparents or have a thriving career, and we don't hold them accountable for their actions. But on further consideration, we want the same things for all our children: • that they live and stay as healthy as possible • that they have a chance for happiness and joy; that malevolent forces do not disturb their lives • that they contribute in some way to the lives of others,5 Despite the special qualities we parents find in our disabled children, and in spite of our curbed expectations, we share with most parents a deep love for our children, a commitment to their flourishing, and a desire to always have them in our lives, As AT was her parent's innovation, it was never presented to us as an option for Sesha, From my position as the mother of a grown woman, I recoil at the thought of doing this to my daughter, (Note the turn of phrase: "to my dauglv ter"not/orher,) Might I have felt differently when Sesha was Ashley's age and showed signs of precocious puberty? At six, Sesha was making progress physically and had started to walk. We could not envision a regression, and so we would have rejected any such suggestion. Could I say the same knowing, as I do today, that, as an adult Sesha would not walk independently? Could I say the same if confronted, as were Ashley's parents, with a six-year-old who was developing breasts and sprouting pubic hair? I can certainly imagine being alarmed and fearing what the future held. Still, had I contemplated this option, I can say today that I would have been happy to have had someone talk me out of it. When Sesha was very young, I recall thinking that her infancy and early childhood would probably be our best time with her. In fact, I could not imagine her grown—it was incongruous and, quite frankly, very disturbing. People then and now speak more easily and hopefully of children with developmental "delays" and mental retardation (MR),6 Adults with MR are rarely discussed except when they are victims of terrible abuse or when some poor fellow with "the IQ of a child" has committed a crime.

The Right to Bodily Integrity 614

Hypatia

As I could not have the expectations of a woman for Sesha, there was nodv ing for my imagination to hang on, I was resigned to seeing myself wistfully recalling the halcyon days when Sesha was a child—when her mental age (whatever that was) more closely resembled her physical age, I was in the grip of what Tobin Siebers has called the "horizon of ability" (Siebers 2008), But somehow her young years never strike me now as "halcyon days," They were emotionally much more difficult. As Sesha has matured, we too have developed. The dominant "horizon of ability" has given way to a rich acceptance and full appreciation of who she is, of the lovely woman she has become. As much as I loved Sesha from the moment of birth, perhaps I love her still more today. She has acquired her own personality, her own mature beauty. More important still, I have come to grow increasingly more humble in what I think I know about my daughter (just as, I may note, I have had to learn how little I know of and understand my norvdisabled child), Sesha's otherness is both more and less palpable today. The quality of containment, of mystery that we each present to each other, regardless of ability, is increasingly clear to me. We always see each other through a glass darkly, but when viewing a child with cognitive disabilities, the glass is darker still. At the same time, I find more and more ways in which her disability is not as much of a difference as I had presumed. Her development will not show up on an IQ test, but she has become increasingly mature emotionally. As in the case of my adult son, the decades have altered her tastes, her understanding, and her responses to the world. All this, I hope to show below, is pressingly relevant in considering the ethical dimensions of AT, A CARE ETHIC FRAMEWORK Although many arguments against AT have been offered, some more effective than others, the argument that I make is based on an ethic of care. In the ethic of care that serves as my ethical framework, we care for another, in the normative sense of care, when we are motivated to concern ourselves with the well-being of another for that other's own sake (Darwall 2002) and when such motivated actions contribute to the person's flourishing,8 Below I briefly discuss the elements of an ethic of care that figure in the arguments I present,

ASYMMETRIES AND DEPENDENCIES An ethics of care recognizes that our ethical life includes unequal and dependent parties. This immediately recommends it as the appropriate framework to consider the ethics of AT, For the procedure, beginning with a child diagnosed with SCDN who is incapable of consenting or entering the conversation, involves parties that are asymmetrical in power and dependency. The parents

327

328

The Right to Bodily Integrity Eva Feder Kittay

615

who have the standing to provide a "substituted judgment" are themselves not fully equal and autonomous agents in medical situations. They are dependent on medical personnel for expertise in making the best choice for the child. An ethic of care would demand that the medical personnel recognize their asymmetrical power. In their role as carers, they have to listen to parents' views and concerns. But because the new parent, if not herself disabled or already the parent of a disabled child, is likely to bring her own ableist biases to the situation, and as the physician is professionally liable to see disability as a medical condition only, a fully adequate response will require information from those better situated to provide a perspective from a life lived with disability,

THE TRANSPARENT SELF A care ethics asks that we make ourselves "transparent" to the needs of the other (Kittay 1999, 51), That is, we promote the interests of the other as that individual experiences those needs—as best as we can ascertain them. As carers, our moral labor demands that we imagine the world from the perspective of the one cared for; that we respond to the cared-for in accordance with her own needs, desires, and interests; and that we attend to ways that our own needs, desires, and interests may color, obscure, or deflect those of the individual cared for. This is already hard when one is dealing with a still unformed person such as a young child, but is especially challenging when the person being cared for cannot be explicit in communicating needs and interests. In the case of a child like Ashley the difficulties seem insurmountable—we can at best get asymptotically close—but it is precisely for someone as vulnerable as Ashley that we need such stringent requirements. Within the constraints of a care ethics, all the carers, parents, physicians, and hospital review boards must be informed by the lived experience of disability. No doubt this is complex since those who can offer a view are by that fact alone not the target audience for AT, Nonetheless, from within the constraints of a care ethics, the fact that the judgment from the disability community is decidedly negative carries moral weight within an ethic of care, less because this third party might have an interest in the outcome of this case, (though this does matter) and more because people with disabilities help parents become more transparent to the needs of their child,

THE RELATIONAL SELF The transparent self derives from the concept of the self as relational. On this view the boundaries between self and other are not impenetrable. It is this porosity that makes the transparency possible, but also challenging. The wellbeing of a child, assuming a loving family, is critical to the well-being of parents and siblings, just as their well-being is crucial to that of the child. This interdependency is at the heart of Ashley's parents' argument that AT is for Ashley's

The Right to Bodily Integrity 616

Hypatia

own sake and makes their argument persuasive to those who might otherwise oppose AT, Yet the relational self is neither merged with, nor grafted onto, another self. Although each self is connected to others, it is distinct as well; otherwise there are no multiple relata to stand in relation to one another. To act caringly to ward another is a mean between thinking of the other's interests as identical to our own and thinking of them as entirely distinct. When we give the family the power to act toward one another in ways that strongly contravene moral intuitions governing our actions toward one another, we are in danger of losing that mean. For example, a parent might know her child better than a third party and may insist on a right to beat sense into her. But severely beating children contravenes strong moral prohibitions, and we insist that a parent's power does not reach so far,

CARE ETHICS AS AN EMBODIED ETHICS An ethic of care is an embodied ethics. We fail to care for another when we take an instrumental approach to the body. From an ethics of care perspective we cannot attend to the body without attending to the person, and we cannot care for a person without attention to their bodily integrity and well-being,

CONTEXT An ethics of care is a contextual ethics that considers the particular actors, time, place, and circumstances as relevant to ethical deliberation. However, although the context of this child and this family matter, the context here goes beyond one family, not least because Ashley's parents have made a point of promoting AT, No evaluation of AT within an ethic of care can ignore broader contextual features of the case, especially as the population in question historically (and still today) is highly stigmatized, and as people with such disabilities have been (and continue to be) mistreated and abused, Care "Completed in the Other". Care, as Nel Noddings has put it, has to be "completed in the other" (Noddings 1984, 4); or as Joan Tronto has stated, care needs to be received to be care (Tronto 1994, 106), This little noted consequentialist element of an ethic of care—that ministrations directed at the other are not care until they are taken up by the cared-fbr as care—perhaps plays the largest role in determining whether we should see AT as ethically permissible within an ethic of care. It justifies asking whether parents, even with the best intentions, care for their child in the best way possible. As we have yet to see how Ashley and other (unpublicized) cases of AT turn out, the final verdict remains uncertain. But, as we shall see, an ethic of care gives us many reasons to be doubtful, while it supports seeking alternate ways to care for children such as Ashley,

329

330

The Right to Bodily Integrity

Eva Feder Kittay

617

The contention of this essay is that despite good intentions, neither Ashley nor other qualified disabled children are well served by AT, Though it was done in the name of care, it does not foster flourishing in critical ways and thus falls short,

QUESTIONABLE PRESUMPTIONS The mental exercise I proposed at the paper's outset engages four controversial presumptions. Each, as I will show below, is problematic, 1, The body, rather than being a constitutive part of who we are, has a primarily instrumental role, 2, AT claims to inhibit a body's development to make it more fitting to one who will always remain at the developmental stage of an infant, 3, AT will avoid misuse by being limited to the severely cognitively disabled who are non-ambulatory, 4» AT solves the difficult problem of caring for Ashley in a way that keeps her close to the bosom of her family. Presumption 1 sets off those who react to the initial description of AT with horror from those who withhold judgment. For the first group, such drastic bodily alterations are justified only if they are needed to preserve a child's life or vital functioning. For the second, many lesser justifications will suffice. This may be an unbridgeable difference. Yet I hope to show below that the second group's instrumental view of the body is inconsistent with deeply held moral intuitions and is incompatible with an ethics of care that treats persons as embodied. Such intuitions normally constrain an unfettered use of biomedical technologies. Yet we might relax the constraints if we maintain Presumption 2, the belief that these disabled minds undergo no development, and Presumption 3, that if AT is limited to people with such disabilities we can avoid abuse of AT, These claims, I propose, underlie the judgment that Ashley's disability justifies AT, But Presumption 2,1 contend, is belied by empirical facts, and Presumption 3 is discriminatory and unwarranted, not least because targeting an already stigmatized group runs the risk of their further stigmatization and mistreatment. When assured that the family who requested the procedure was well meaning and loving, the last objection might be lifted for all but the most resistant group. Assured that AT would be limited to SCDN children (Presumption 3), they may grant that insofar as a loving family displays only the best motives, and as no good, socially available alternatives exist (Presumption 4), such families should have the final voice. Using an ethic of care, I reason that Ashley is better cared for, and we are all better served, if efforts are instead directed at

The Right to Bodily Integrity 618

Hypatia

improving the supports, services, and equipment for the disabled and their families,

ARGUMENT L THE BODY U!NSTRUMENTALIZED" VIOLATING BODILY INTEGRITY In an article meant to lay to rest the many criticisms launched at AT, Douglas Diekema and Norman Post concede a right to bodily integrity, but claim it is a right that a physician may override in certain instances: 1) With permission given by the person or surrogate, 2) Without permission physicians should determine that "tumors, tonsils, and appendices" be removed. 3) In the case of children with disabilities when physicians "alter physical appearance," insert "gastrostomy tubes and tracheotomy tubes," and perform osteotomies (Diekema and Post 2010, 34). AT, they contend, is no different. Will this defense hold? I believe not. 1) Pven an autonomous patient's permission is not always dispositive. Our body is our own, but we are not thought to have an absolute right to violate it, or to permit others to do so. Ashley did not, because she could not, give her permission. In such cases the surrogate, usually the parent, decides —for who is better equipped to determine and to care about the child's best interests than a caring parent? (As a parent, I also do not want others to intervene.) But to determine what is in the child's best interest, one's beliefs need to rest on a solid foundation. New parents of a disabled child have little sense of the trajectory of that child's life, so their decision rests on shifting sands. Furthermore, their decision is based on a physician's assessment that their child will always "have the mind of a baby." This, I argue below, is misleading. 2) Are the medical procedures that do not require permission appropriate comparisons? Tumors are removed because they are life-threatening or may interfere with bodily functioning. Tonsils are removed because they heighten susceptibility to infections. Appendices are removed when infected, or likely to become infected, and pose a risk to life. Where there is an imminent danger, physicians can proceed without permission if getting consent involves a risky delay. None of these conditions apply in Ashley's case. 3) All the procedures enumerated by Diekema and Post preserve life or ameliorate a health condition. They address specific ailments that need treatment whether or not the child is disabled. Those procedures carried out on disabled children that do not preserve life or affect function raise serious moral questions. However, the procedures involved in AT preserve neither life, health, nor function.

331

332

The Right to Bodily Integrity

Eva Feder Kittay

619

Can one retort that intrusions on bodily integrity are ultimately justified in Ashley's case because, like all those mentioned, they are procedures intended to promote the patient's flourishing? AT promotes parental care, and because such care is more important than height for her flourishing, the treatment is justified. Were Ashley's care impossible without it, then yes. That we have to hire help or rely on equipment to do what parents' hands and arms can do is a loss; but although the ability to care for Ashley without such assistance may be lost, the ability to care for Ashley, and even to provide that care at home, is not. Learning what services and resources are available, advocating for more services, and adjusting to new people and equipment all take time and energy. And, surely, raising a child with severe disabilities is demanding enough: I know, I have been there, GA (growth attenuation) is a shortcut through these difficulties. But, as I will argue below, if these procedures would not be done but for the disability when these do nothing to cure or mitigate the disability, and if we believe that no reason justifies restricting the height of a person who otherwise would be within normal range to the height of a six-year-old, when that person does not have severe cognitive disabilities, then we should not avail ourselves of this procedure in the case of this disability,14 As one mother, Sue Swenson, put it: "Parents [of disabled children], too, need to operate within the bounds of society," As for the opportunities that open along with the difficulties, she writes: It is difficult to care for a son who is legally blind, quadriplegic, non-verbal, autistic, profoundly intellectually disabled, six feet tall and 190 pounds. Heck, if you put it that way, it sounds impossible We have not been his sole caregivers since he was eleven,,,, Family support helped us learn to let go, and to recognize the man that emerged from behind the face of our baby boy. We needed information and training about raising a severely disabled child: how to position him so he could participate; how to transfer him without lifting; how to support his mobility and find useful equipment; how to figure out what he wanted; how to think about his rights We love our profoundly disabled son as we love our other sons. Like them, he is a strong, gentle, complex, and interesting person. He is his own man,1 THE INHERENT GOOD OF GROWTH Diekema and Post, note that growth promotion therapy is uncontroversial because people mistakenly think its point is to bring a child within a given norm,

The Right to Bodily Integrity 620

Hypatia

whereas growth attenuation takes the child further from this norm. Instead, they argue, both procedures have nothing to do with norm heights but are manipulations of the body that make it more conducive for certain ends: In the case of growth promotion it is to make the child competitive in the job market and in social interactions. In the case of GA it is to make the child small enough to be cared for in the home (Diekema and Post 2010, 34). But GA is shaped entirely by contingent social values or perceived needs, whereas growth is what happens when a child is kept healthy and properly nourished. In the 1950s and 1960s a tall girl was at a distinct social disadvantage. The innovative "solution" to this socially constructed "problem" was GA using high dosages of estrogen. As we move toward gender parity, GA for tall girls has been cast into the wastebin of oppressive gender practices. Critics have asked (rhetorically) if the aim of GA is to produce a size small enough to keep children like Ashley within the family orbit, why not just remove her legs? Diekema and Post dignify this rhetorical question with a response, giving as one "nontrivial" reason against limb removal that it reduces the number of sites for intravenous access!16 Even if true, the response is grotesque. Removing healthy limbs is abhorrent, I suggest, because we value bodily integrity as a crucial intrinsic good. When deciding whether to remove a limb (or attenuate growth) we weigh not only risks and benefits, but also our values. Imagine parents requesting GA for their talented prepubescent son who passionately wants to be a champion gymnast (or jockey or coxswain, where small size is necessary), and is willing to trade height for the realization of a dream. Surely the request would be denied. To accede to it, some may argue, would be to close the boy's future options; but note that to refuse him, we foreclose an option for which he has demonstrated passion and talent. Instead, I venture, our moral intuition is that when we regard his body as merely instrumental to a specified ambition or goal, we also treat him as a mere instrument: our bodies are ourselves—what is done to our bodies is done to us,

SEXUALITY AND ORGAN REMOVAL Diekema and Post take an equally instrumental stance toward sexual organs. Surmising that the removal of the breast buds might reduce sexually pleasurable sensations, they promptly dismiss the worry since Ashley would never "experience sexual pleasure without being exploited or sexually abused" (Diekema and Post 2010, 34) • Asking "what it is about becoming a woman that would be of interest to Ashley," they write: "Most of the usual features that distinguish a woman from a girl—the opportunity to marry, procreate, work, lead an autonomous life—would not have been available to Ashley with or without a uterus, fully developed breasts, or normal stature" (Diekema and Post 2010, 34).

333

334

The Right to Bodily Integrity

Eva Feder Kittay

621

As the childishness in her face fades, Sesha's body has taken the form of a woman, I don't know if Sesha can rejoice in her breasts, if she notices them at all, if she would miss them, or if she compares herself to other girls. What I do know is only that I don't know. Nothing about Sesha—with all her profound incapacities—tells me that Sesha is incapable of these feelings, I can say that I, as her mother, delight in her womanliness. It is very much a part of Sesha, as she is now. Its true that Sesha, like Sue Swenson's son, became harder to handle as she grew to be 5'4" and 120 pounds, and we had to make accommodations. At forty, she now lives away from us during the week and is at home with us only during the weekend not because she is too tall or too womanly, but because at this stage of her life, she has a more varied and fuller existence in the comnup nity where she is than she would if confined to our home. At a certain point we stopped taking her with us everywhere not only because she got bigger, but also because we felt that we needed time with our son, and he needed time to do things with us that Sesha could not share. Had Sesha been petite and skinny, some things would have been easier. What started to make it difficult to bring Sesha with us was the cumbersome wheelchair she needed to keep her well' positioned. Today there are umbrella strollers and beach buggies for strolls and water fun. Do I regret at all that the "keep-her-small solution" was not available to us? No, emphatically not. We stand Sesha up and love that she is just a tad taller than me, "Sesha! You're bigger than Mommy!" Why? Why does anyone enjoy noting how tall one's child has become? We take pleasure and pride in our bodies as they grow and mature because , , , we do. Full stop. It needs no further justification. It is constitutive of a thriving life. That is not to say that one cannot thrive without breasts and without a uterus, or that short stature can only mean that we have not thrived. But height and the bodily changes of womanhood are among the ways in which human beings thrive, and ways to signal this thriving to others,

ARGUMENT 2, A BETTER FIT BETWEEN THE DISABLED BODY AND THE DISABLED MIND Ashley's parents report: "Unlike what most people thought, the decision to pursue AT was not a difficult one" (Ashley's Parents' Blog), They go on to say that once they understood the options, the "right course was clear to us," What I believe happened is that once they understood that a child who was an eternal baby would grow into a woman, the course was clear to them. They approvingly quote George Dvorsky: '"The estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby',,,, Ashley can continue to delight in being held in our arms and will be moved and taken on trips more

The Right to Bodily Integrity 622

Hypatia

frequently" (Ashley's Parent's Blog), Professionals tell us: "She will always have the mind of a three-month-old infant," The diagnosis and prognosis is stasis. It is just this idea that misleads us. To have the mind of a baby and the capacities of a baby are not the same thing, for the disabled person may well have an understanding and a set of emotional responses that far exceed her capacity to act The brain may be impaired, but it is not frozen. Synapses continue to be formed as they do in all brains. As the Board of the American Association for Intellectual and Developmental Disabilities writes: "The abundant evidence [is] that all children are able to learn and that the cognitive capabilities of children with severe motor impairments can be grossly underestimated ,,," (AAIDD 2007), A young woman with Rett's Syndrome with whom I am acquainted has no more capacities than a very young child, perhaps a baby of three months. But this young woman, when told that her father was dying, would be found by the caregivers sitting quietly shedding tears for weeks. This is not within the understanding of a baby, A dear caregiver joked in front of my daughter that the secret of her youthful appearance was that she had no worries, like paying taxes and bills, I countered by saying that Sesha has a lot to worry about, like not being able to scratch an itch, move out of an uncomfortable position, tell us what she wants, and so on. My daughter turned to face me, gave me an intense look, smiled broadly and reached out to hug me, I was startled, as were all who witnessed this response. Maybe she only grasped the tone, but it is no less possible, indeed plausible, that she understood the words. She has, after all, been listening to human speech for forty years. What we know of are the capabilities that allow the brain to direct the rest of the body in certain ways. We do not yet know enough about what is actually going on in the (bodily) brain and the subjective world of people with severe cognitive disabilities. As Ashley will have hormones produced by intact ovaries, she may well experience the sensations of bodily maturation. What will it mean to her not to have breasts? Do we know? What will it mean to her to be a woman? Do we know? How will she experience bodily growth? Can we say? No, no, and no. It is the misleading image of a fertile, full-grown woman with the mind of a baby that makes us think we know something about which we, at the current time, have not a clue, Diekema and Post concede that "some rights claims raise troubling questions" among which are "that Ashley had been robbed of the right to sexual pleasure," They grant that the removal of the breast buds might reduce sexually pleasurable sensations she might otherwise experience, but promptly dismiss the worry. Why? Because it is too worrisome to think of children like Ashley growing into sexual beings, I deeply appreciate the worry and the fear that such a young woman might be exploited or abused, but removing breast buds and preventing breasts will

335

336

The Right to Bodily Integrity

Eva Feder Kittay

623

not guarantee or even reduce these possibilities. If one is perverse enough to sexually abuse such a girl, might he or she even be attracted by the strange history of a child who parents removed her breast buds? Who can say? Only careful screening, supervision, and respect for these girls and women can offer the needed protection. Desiring AT for one's child makes sense if "she will always be a child mentally," as an adult body makes meeting her needs (the needs of a child) more cumbersome. Keeping Ashley forever small will, alas, not keep her forever young. Though difficult to grasp while the child is still young, one learns that in the case of disability, things don't just fit together in standard ways. Some cognitive skills are minimal, others may go through a relatively "normal development," Because one is incapable of holding up one's head, speaking, or walking does not necessarily mean that they cannot understand a slight. Because someone has had no apparent expressive speech does not mean that he or she cannot understand the thoughts of others as they are conveyed through language. The relationships among such capabilities are more complex and less predictable than in those who are species-typical. From a position of an ethics of care, the caregiver needs to be able to understand the world, as far as possible, from the perspective of the cared-for. But this sort of understanding on the part of an able parent of a disabled child requires more than empathy, and more than love. It requires understanding and education. It requires time to grow with the disability as the child does. To shortcircuit the project is ultimately not conducive to good care. Is Ashley, or Sesha, or another individual best cared for by always being kept close to Mom and Dad? Having moved through forty years of the life cycle, I have come to seriously question that proposition, A three-month-old may need only Mom or Dad or Grandma, But a severely cognitively disabled adult needs more, much more, ARGUMENT 3, COGNITIVE DISABILITY AS THE (SOLE) INDICATOR FOR AT Proponents recognize that there is always a risk of a misdiagnosis. Furthermore, I have offered reasons to question if the SCDN truly are incapable of all such understanding, even when the diagnosis is correct. Proponents respond that all medical procedures involve some uncertainty; there is always the risk that we are wrong. As in all medicine, we weigh doing the procedure against doing nothing. In the case of breast bud removal, Diekema and Post ask if we had done nothing and "Ashley suffered frequent yeast infections under her breasts, recurrent biopsies, and fatal breast cancer due to a delayed diagnosis ,,," (Diekema and Post 2010, 36), would that be preferable to having done nothing? But this retort is not compelling. Yeast infections are a problem for large-breasted women, yet can be treated with over-the-counter antifungal cream, and often are preventable with good

The Right to Bodily Integrity 624

Hypatia

care. As unpleasant as recurrent biopsies are, it is hard to imagine anyone choosing breast removal to avoid them. When there is a congenital risk of breast cancer, some women do favor preemptive mastectomy. But so far we have not suggested removing breast buds in all young girls where there is a family history of breast cancer. It is no more urgent in women with very severe cognitive disabilities. The claim is that the risks are justification enough for the SCDN, as the individuals lack the awareness to understand the losses or engage in social interactions where the loss would be felt. Against the complaint that this looks like discrimination, proponents can answer that all medical procedures target limited populations. One prescribes antibiotics only to people with bacterial infections; anti-convulsives are limited to epileptics. Each medical intervention is targeted at particular ills that are dangerous to life, cause pain or ill health, or reduce function. Children with disabilities are subject to many invasive procedures that are limited mostly to people with disabilities, Diekema and Post cite "tracheotomies to improve airway patency and enable suctioning, tonsillectomy to reduce airway obstruction, fundoplication to reduce gastroesophogeal reflux, gastrostomy tubes to aid feeding, spinal fusions to prevent advancement of scoliosis, and tendon releases to reduce the effects of spasticity" (Diekema and Post 2010, 36), But all these are also carried out on children not otherwise disabled or they are directed to a specific medical disorder, not a class of persons per se, Tracheotomies are used for whoever needs this assistance for breathing; tonsillectomy and spinal fusions are carried out regardless of a person's cognitive or physical capabilities; gastrostomy tubes may be more frequently administered to old and young whose cognitive function is impaired, but only because such impairment is coupled with conditions that impact swallowing and food intake. Severe cognitive disability is not an indicator for any of these or any other procedure save AT, for which it is the sole and necessary indicator, AT is intended for ease in handling the person and preemptively treating sources of pain or discomfort. The disanalogy with all the other cases is that AT alone is not considered as a treatment for any other people whose size, or potential size, can pose equivalent difficulties in care or exclusion from family life—for example, an autistic boy who is likely to turn into a bulky six-footer and have violent tantrums that will require restraints. The main reason for limiting the eligible population in this way is the supposition that these people alone will never know the difference—even if we cannot be sure this is true. But the treatment is not directed at their cognitive disability. It is directed at the difficulty of caring for them—a condition shared by many other populations. Then what else might we be able to do to this population on the supposition that they will never know the difference? The long, cruel, and gruesome history of people with cognitive disabilities, especially when the disabilities are severe, are all justified on the supposition

337

338

The Right to Bodily Integrity

Eva Feder Kittay

625

that these people don't know the difference or can't feel the indignity—that they won't know the difference if a part of their brain is lobotomized, if they are deprived of clothing, if they are showered communally by being hosed down. The horrid shame of it all is made that much worse when some who are ineluded are totally cognizant of their mistreatment. Yet we also have learned that once we stop supposing that "they don't know the difference anyway," we find out that they were entirely capable of knowing, understanding, or at the least experiencing the treatment as mistreatment. People with severe cognitive disabilities are often not told when a close family member dies because "they just wouldn't understand," Yet the young women with Rett's understood all too well when told. So did another young man, diagnosed as severely cognitively disabled, whom I know, I myself witnessed his howling pain when told of his father's death. The uncertainty of us not knowing what they know is a great risk indeed. And the risk of further stigmatizing this group and discriminating against them—doing something to them that would not be done to anyone else—is also far too grave a risk to permit AT or even just GA to be routinely offered to parents of these children. We reopen a Pandora's box of well-intended salves that turn into nightmares when we allow severe cognitive disability to be the lone and sole indicator for a certain treatment. In medical care as well as parental care we do balance risks and benefits. Caring is often a matter of making these difficult choices, but if we fail in our care when we do more damage than good, an ethic of care would suggest that some risks are not worth taking, no matter the benefits,18'19 The psychological pain expressed in some other cases where parents have intervened in their child's development while their child was very young and where there was not a medical necessity indicates that AT is not a risk worth taking, especially since the difficulty is ultimately less with the child's body and more with the social response, or rather lack of social response, to the needs of families of a SCDN child,

ARGUMENT 4. A SOCIAL Fix FOR A MEDICAL ILL Jeffrey Brosco, a pediatrician and medical historian, in one of the best commentaries on the subject, writes sympathetically of the predicament faced by many parents of severely cognitively and physically disabled children. As a practical matter, Brosco points out that we do not know if AT will work. That is, "will the administration of high-dose estrogen to children with profound disabilities enable them to remain at home under the care of their parents for a longer period? And will this improve the quality of their lives?" (Brosco 2006, 1077-78) His question is particularly relevant for an ethic of care because of its strong consequentialist element. Perhaps we would have to wait too long for the

The Right to Bodily Integrity 626

Hypatia

Ashley case to provide evidence in either direction. But we have no evidence that smaller individuals are kept at home longer, nor that this is a factor in decisions to place children in out-of-home residences. We also lack evidence correlating smaller size with a better quality of life. Most important, Brosco asks whether the proposed treatment does "justice to the scope of the problem?" His assessment is that the most morally troubling feature of the Ashley case is that it "fails to situate the plight of these parents struggling to care for their children, in the larger context of a societal failure to provide adequate social support in this most admirable of undertakings," Instead it offers "simple technical fixes for seemingly intractable problems, which often combine biological and social aspects of human existence" (Brosco 2006, 1077-78), Many hoped that the case would fuel demands for increased assistance. Equipment (often not user-friendly, reliable, or gainly) and caregivers (often untrained and inexperienced) are expensive and are only occasionally covered by health insurance. In communities where help can be obtained, parents have to scratch and claw their way into the appropriate programs. Although some strides have been made in making equipment easier to use, more reliable, sleeker, and less—well, let's say it—ugly, most equipment is made for institutional, not home, use. Yet, as imperfect as it is, serviceable equipment does exist and contributes to improving the lives of people with disabilities and caregivers, and good non-familial caregiving is possible. The gains that have been made for people with severe cognitive disabilities have been hard won—and mostly by families who refuse to settle for an inferior life for their child. The desire to keep Ashley forever small is quixotic even if doing so could help with very difficult problems of management that cry out for personal and social solutions. But the problems of care exist for those whose growth cannot be attenuated: those already past puberty, those who become disabled through disease, accident or war, those frail elderly no longer able to care for themselves. We cannot pare down their bodies to the leftover functional parts—not, that is, without creating a monstrous society, AT does fail "to do justice to the scale of the problem," Brosco's appeal to the larger social problems that are the larger context for the Ashley case has an implicit appeal to the social model of disability. Disability activists who have largely decried AT abjure solutions that "fix the person" rather than alter the environment, Diekema and Post (2010), along with other proponents, acknowledge the social problem, but ask why a family needs to sit around to wait for needed societal changes. If a family can make life better by altering the impaired body, why should an ideological construct such as the social model stand in the way? If we dismiss the social model as mere ideology, we fail to see that because of it, disabled people have been able to reject the view of themselves as damaged

339

340

The Right to Bodily Integrity

Eva Feder Kittay

627

goods, and claim "the right to live in the world," (tenBroek 1966, 842) and to do so as they are. In order to see the world from the child's viewpoint, a parent attempts to cultivate a "transparent self But as nondisabled parents who try to cultivate a transparent self of a care ethics, we must acknowledge our limited grasp of life lived with a disability. As much as we love our children, we are unlikely to see the world from their perspective, and we are likely to continue to harbor biases we retain from an "horizon of ability," The caring physician too needs to acknowledge that it is an occupational hazard to favor a medical model. In the early years of our disabled children's lives, we parents desperately want to believe that with an operation here, a treatment there, the right exercises, the right therapies, the problem will dissolve—our children will live "normal" lives. Parents have to tread a delicate line between refusing resignation and accepting the child as she is and as she will become. When there is no way to "normalcy" or increased function, a change in perspective is more than just "settling"—it is positively transformative,20 When Sesha was six, I shared Ashley's parent's urge to freeze time, to keep her as the child she was then. But no medical intervention can suffice. We age and what was small when we were young is now not small enough. Siblings, too, mature and will want to do things without any siblings—disabled or not. Even if Ashley herself is cherished within the family, her future caregivers may well feel differently about the parent's choice, disparaging the parents, the child, or both. As they grow older, will Ashley's siblings see what had been done to her as the loving act of parents with a full acceptance of Ashley for who she is? Or will they wonder what conditions attach to their parents' acceptance of them as they are? The prototypes of the environmental fix that the social model of disability urges are alterations in the physical environment. As important as these are, still more important is the environment of inclusion: of welcoming many sorts of bodies and minds, seeing the world as enriched by this diversity, and embracing the possibilities as well as the challenges presented by those who diverge from the norm. If our actions with respect to our children belie the need to make the environmental transformations—creating a world for them to flourish even when we parents are no longer there for them—there is a generalized way in which we have not done well by them, have not cared as well for them as well as we might, had we instead worked to create an environment in which they could flourish, NOTES I thank Debra Bergoffen and Gail Weiss for their patience and wonderful editorial assistance, and Serene Khader and William Pearce for comments on an earlier draft. The

The Right to Bodily Integrity 628

Hypatia

catalyst for this article was Benjamin Wilfond's and Sara Goering's kind invitation to the Seattle Workshop. L See Burkholder 2007; Caplan, 2007; King 2007; Ritter 2007; Saletan 2007a; 2007b; Tada 2007; Tanner 2007; Verhovek 2007. See also Fitzmaurice 2008 for a bibliography of news commentary on the Ashley Treatment. 2. See Ashley's Parent's Blog. 3. Some agreed that the hysterectomy perhaps should have been subject to court approval See Allen et al 2008. 4* See for example Singer 2008. 5. These correlate with Sara Ruddick's discussion of a child's demands: preservative love, development of capacities, and social acceptance (Ruddick 1989). 6. The term "mental retardation," now is out of favor as "retard," has become a common slur. The preferred term is "intellectual (and/or developmental) disability." 7. For a summary of the features that I take to be essential, see Kittay 2007, 3-6. 8. The last of these is little remarked upon in care ethics. In Kittay forthcoming, I contend this consequentialism means that although the subjective state of the carer matters in judging whether an action is caring, unless the outcome does foster the flourishing of the one cared for, it is not care. If I helped, but minimally, the best that can be said is that I delivered poor care. But if my efforts harm rather than help, then the best that can be said is that I "tried to" care. 9. Carol Gilligan stresses this point (Gilligan 1982). An ethics of care may be thought of as an ethic directed at the tension between our necessary dependence on others and our distinct set of interests. 10. Liao et al. (2007) point out the absurdity of this proposition when applied to anyone who becomes cognitively disabled later in life. But there is another profound mistake that I call attention to above. 11. I assume that means without the consent of the non-autonomous person, but with the consent of the surrogate, or, in emergencies, without anyone's assent. 12. Surrogacy may be based on "substituted judgment" or "best interest." Substituted judgment supposes that the surrogate can know what the patient would have wanted, had the patient been able to choose. As Ashley could never make an autonomous decision, the "best interests" standard is likely to apply. See the AMA Code of Medical Et/ucs, Opinion 8.081: Surrogate Decision Making. 13. See arguments in Parens 2006. That we permit some questionable practices is a poor justification for permitting still others. 14. This, of course, then exempts dwarfs from consideration. Dwarfism is a human variation, which is not disparaged by objecting to GA. 15. Personal communication. See also Wilfond et al. 2010. 16. Additional reasons include morbidity, which is a risk of limb removal, and appearance, that is, the visual impression created by a person missing limbs. Neither is compelling as the reason to favor GA by high-dose estrogen. High-dose estrogen for very young children has not previously been tried, and hysterectomy and breast-bud removal

341

342

The Right to Bodily Integrity

Eva Feder Kittay

629

carry the risks of surgery. Either procedure will produce an anomalous appearance. But good cosmetic prosthetics are available for those missing limbs. 17. They do not consider the possibility of a spontaneous orgasm—assuming that is possible if one lacks breast and a uterus. 18. A utilitarian calculus may yield a different result. 19. See, for example, Dreger 1998; Chase 1999; Feder 2002. 20. See for example, AAIDD 2007 and ADAPT 2007. For an individual disability activist, see Peace 2007.

REFERENCES ADAPT 2007. ADAPT youth appalled at parents surgically keeping disabled daughter childlike. Press Release Archives Article 253, January 5. http://adaptold.adapt.org/ adaptpr/index.php?mode=A&id=253;&sort=d (accessed January 25, 2011). Allen, David, Michael Kappy, Douglas Diekema, and Norman Post. 2008. Growthattenuation therapy: Principles for practice. Pediatrics 123 (6): 1557-61. AMA Code of Medical Ethics. Opinion 8.081: Surrogate decision making, http:// www.ama-assn.org/ama/pub/physician-resources/medical-ethi(^/(X)de-medical-ethics/ opinion8081.shtml (accessed January 25, 2011). American Association on Intellectual and Developmental Disabilities (AAIDD). 2007.

Board Position Statement: Growth Attenuation Issue, http://www.aamr.org/con tent_173.cfrn?navID=31 (accessed January 25, 2011). Ashley's Parents' Blog. http://ashleytreatment.spaces.live.com/blog/ (accessed January 25,2011). Brosco, Jeffrey. 2006. Growth attenuation: A diminutive solution to a daunting problem. Archives ofPediatric & Adokscent Medicine 160 (10): 1077-78. Burkholder, Amy. 2007. Ethicist in Ashley case answers questions. CNN. http:// www.cnn.com/2007/HEALTH/Ol/l 1/ashley.ethicist/index.html (accessed January 25,2011). Caplan, Arthur. 2007. Is Peter Pan treatment a moral choice? Debate over stunting a disabled child's growth pits comfort against ethics, http://www.msnbc.msn.com/id/ 16472931 (accessed January 25, 2011). Chase, Cheryl 1999. Rethinking treatment for ambiguous genitalia. Pediatric Nursing 25 (4): 451-55. Darwall, Stephen. 2002. Welfare and rational care. Princeton: Princeton University Press. Diekema, Douglas, and Norman Post. 2010. Ashley revisited: A response to the critics. American Journal ofBioethics 10 (1): 30-44. Dreger, Alice. 1998. When medicine goes too far in the pursuit of normality. New York Times, July 28. Dvorsky, George. 2006. Helping families care for the helpless. Institute for Ethics and Emerging Technologies. http://ieet.org/index.php/IEET/more/809/ (accessed January 25,2011). Feder, Ellen K. 2002. Doctor's orders: Parents and intersexed children. In The subject of

care: Feminist perspectives on dependency, ed. Eva Feder Kittay and Ellen K. Feder. Lanham, Md: Rowman and Littlefield.

The Right to Bodily Integrity

630

Hypatia

Fitzmaurice, Susan. 2008. News and commentary about Ashley's treatment, http:// www.katrinadisability.info/asrileynews.ritmL Last updated: March 13, 2008 (accessed January 25, 2011). Gilligan, Carol. 1982. In a different voice. Cambridge, Mass: Harvard University Press. Gunther, Daniel F., and Douglas Diekema. 2006. Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Archives of Pediatric & Adolescent Medicine 160 (10): 1013-17. King, Larry. 2007. CNN Larry King Live: The "pillow angel" Aired January 12, 2007. Transcripts available at http://transcripts.cnn.com/TRANSCRIPTS/0701/12/ lkl.01.html (accessed February 1, 2011). Kittay, Eva Feder. 1999. Love's labor. New York: Routledge. . 2007. A feminist care ethics, dependency, and disability. APA Newsletter for Feminism and Philosophy 6 (2): 3-6. . Forthcoming.The completion of care. In Care and the professions, ed. Ana Marta Gonalez, Craig Iffland, and Eva Kittay. Barcelona: Social Trends Institute. Liao, Matthew S., Julian Savulescu, and Mark Sheehan. 2007. Ashley treatment: Best interests, convenience, and parental decision-making. Hastings Center Report 37 (2): 16-20. Noddings, Nel. 1984. Caring: A feminine approach to ethics and moral education. Berkeley: University of California Press. Parens, Erik, ed. 2006. Surgically shaping children: Technology, ethics, and the pursuit of normality. Baltimore: Johns Hopkins University Press. Peace, William. 2007. Protest from a bad cripple: AT and the making of a pillow angel. Counterpunchy January 18. http://www.counterpunch.org/peace01182007.html (accessed January 25, 2011). Ritter, J. 2007. Forever a girl... destined to grow up. Chicago Sun-Times, January 12. Ruddick, Sara. 1989. Maternal thinking. New York: Beacon Press. Saletan, William. 2007a. Girl, interrupted: The power to shrink human beings. SJate Magazine, http://www.slate.com/id/2157861/ (accessed February 20, 2011). . 2007b. Arresting development. Washington Post, January 21. Siebers, Tobin. 2008. Disability theory. Ann Arbor: University of Michigan Press. Singer, Peter. 2008. Q&A Session. Conference cognitive disability: Its challenge to moral philosophy, http://www.stonybrook.edu/sb/cdconference/podcasts.shtml (accessed January 25, 2011). Tada, J. 2007. The "pillow angel." CNN Larry King Live. Transcripts available at http:// transcripts.cnn.com/TRANSCRIPTS/0701/12/lkl.01.html (accessed January 25, 2011). Tanner, S. 2007. Outrage over girl's surgery. Monterey County Herald, January 12. tenBroek, Jacobus 1966. The right to live in the world: The disabled in the law of torts. California Law School Review 54:841-919. Tronto, Joan. 1994. Moral boundaries: A political argument for an ethic of care. New York: Routledge. Verhovek, S. 2007. Parents defend decision to keep disabled girl small. Los Angeles Times, January 3.

343

344

The Right to Bodily Integrity

Eva Feder Kittay

631

Wilfond, Benjamin, Benjamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering, and the Seattle Growth Attenuation and Ethics Working Group. 2010. Navigating growth attenuation in children with profound disabilities: Children's interests, family decision-making, and community concerns. Hastings Center Report 40 (6): 27-40.

SUPPORTING INFORMATION Additional Supporting Information may be found in the online version of this article: Appendix SI* Expanded Online Version. Please note: Wiley-Blackwell is not responsible for the content or functionality of any supporting materials supplied by the authors. Any queries (other than missing material) should be directed to the corresponding author for the article.

Part IV Transplantation

This page intentionally left blank

[13] Transplantation and Rights over Our Bodies T.M. Wilkinson Do people have a duty to donate their organs after they die? Some writers think so, and a few would have the state enforce the duty by conscripting organs. Should people be allowed to sell their organs? Many say they should not, fearing the risk to the sellers' health or the corrupting effect on social relations. How should scarce organs be allocated? Some say organs should be given to those who would benefit the most, while others argue for what they think are fairer allocations. These views can be loosely classified in these terms: moralism, which involves the enforcement of moral duties; paternalism, which involves stopping people from harming themselves; and distributive justice, which is about the goodness or Tightness of allocations. Now consider the following examples. (1) Suppose a man refuses to donate a kidney to his son, despite having promised he would. With certain further details, we would be justified in holding this man's refusal to be morally wrong. Suppose, moreover, that society finds his behaviour repugnant. Nonetheless, few would say this man should be forced to submit to removal of his kidney for transplant into his son. Some interest or claim of this man outweighs his son's need and the man's earlier promise.1 It also outweighs repugnance. For all that society might find his refusal repugnant, it may not act on that feeling by taking the man's kidney. (2) Suppose a competent woman refuses the removal of a cancerous kidney even though removal is necessary to save her life. It is widely accepted that her kidney may not be removed. People have a duty not to take her kidney when she refuses even when it is in her interests to have the kidney removed. (3) Consider some reasons for kidney conscription, that is, compulsorily taking the second kidney from living people with two. On the face of it, conscription would be recommended by utilitarianism, because the loss to the person of one kidney would likely be outweighed by the gain to the recipient who has no functioning kidney; by egalitarianism, because conscription would reduce the inequality between those with two kidneys and those with none; and priority to 1 See the discussion of the relevantly similar 1978 American case of McFall v. Shimp in Michele Goodwin, Black Markets: The Supply and Demand of Organs (Cambridge: Cambridge University Press, 2006), pp. 63-6. McFall needed bone marrow to live and tried to get the court to force his cousin and friend Shimp to provide it. Judge Flaherty, trying the case, described Shimp's refusal as 'morally indefensible'. But he found for Shimp nonetheless, saying 'Forcible extraction of living body tissue causes revulsion in the judicial mind.' See the quotation in Cecile Fabre, Whose Body Is It Anyway? Justice and the Integrity of the Person (Oxford: Clarendon Press, 2006), p. 109.

348

The Right to Bodily Integrity 12

Transplantation and Rights over Our Bodies

the worst off, since those with no kidneys are worse off than those with two, and worse off than those with two would be after one is taken off them. Despite the apparent convergence on conscription of these widely held views of justice, conscription is not taken seriously as a matter of policy. Indeed, virtually no one suggests even conscripting blood, let alone kidneys. Our body parts may not be conscripted even when conscription would do more good than harm and have apparently fairer outcomes. If we compare the three examples with moralism, paternalism, and distributive justice, we see that peopled claims over their bodies limit what may be done in the way of enforcing moral duties, stopping people harming themselves, or aiming for a just allocation. Whatever these claims are, they must be weighty ones. The concept that best expresses these claims is the concept of rights. Ethical thinking about transplantation is dominated not by rights, but by the ideas of donation and consent. However, donation presupposes that the organ is the person's to give, not no one's or someone else's or a resource for social use; and the emphasis on consent implies that people have rights to give or withhold consent. Indeed, thinking through the rights people have and how they fit with the interests of other people turns out to answer many of the ethical questions raised by the procurement of organs. For instance, deciding whether the state may stop people selling their organs or may allow families to veto their relatives' wishes to donate depends substantially on how we understand the rights we have over our bodies. The purpose of this chapter is to give an account of the rights that are relevant to transplantation. Rights are the subject of an enormous and sophisticated literature in political and legal philosophy and I shall be drawing on some of its ideas in the later chapters on topics specific to transplantation. It is convenient, however, to set out these ideas in advance, and that is what this chapter does. I do not think the chapter breaks new ground in thinking about rights, but I do think the ideas will be new and illuminating for readers without a background in political and legal philosophy. I have selected the ideas most relevant to transplantation and developed them only as far as I think is needed. Nonetheless, those who are primarily interested in the specific topics discussed later could start there and refer back to this chapter as they need to. The chapter first explains the idea of moral rights. It then argues that we have rights of bodily integrity and rights to individual autonomy, which I shall characterize as 'personal sovereignty'. The chapter spends some time developing a model of personal sovereignty in the light of apparendy conflicting practices and of the doctrine of informed consent in medicine. It concludes by replying to some criticisms of a rights approach. In addition to giving its own account of rights, to be used later in the book, the chapter also introduces concepts, such as negative and positive rights, autonomy, informed consent, and ownership, that figure prominendy in discussions of transplantation.

The Right to Bodily Integrity Moral rights

349 13

MORAL RIGHTS The term 'rights' can be used in various ways.2 This book mostly takes rights in the sense of moral claims—moral constraints on the behaviour of others—with considerable weight. We may distinguish moral from legal rights. Moral claim rights are normative and they offer critical standards to assess social practices, including the law. However, although I am focusing on moral rights, moral and legal rights often overlap in content and they conceptually have much in common. For example, murder infringes on both a legal and a moral right. And moral claim rights, like legal claim rights, entail duties. To get a sense of the force of a right, take a familiar example in modern moral philosophy. Suppose the only way in which one can save five patients is by giving each a transplant, and suppose the only source for the transplants is a healthy friendless man who appears for a check-up. Each of the five would live happily for many years following a transplant and usually it is worse when five lives are lost than when one life is lost. Nonetheless, virtually everyone thinks that it would not be permissible to kill the healthy man in order to save the lives of five patients. The man has a right not to be killed, and this right outweighs the greater gain of saving a net four lives.3 This is an example of what it means to say that a right has considerable moral force. Put another way, rights are peremptory, and this includes being able to override the greater good. Some rights may be absolute, that is, rights where every infringement is a violation, meaning an all-things-considered wrongful act.5 But consider another case: a baby is crawling towards a cliff edge and the only way to save her in time is to push a man out of the way (but not over the cliff). Suppose that the man would not have consented even though he would suffer no harm beyond that of being pushed. Ordinarily, people have rights not to be pushed over but, in this case, it is permissible to push. There are two ways to interpret this conclusion. One is to say that at least some rights can be overridden for at least some benefits. On this interpretation, the rights are not absolute because they may be infringed upon without being violated. The other is to say that rights might be so specified so that they never need overriding. For instance, in this case, the right not to be pushed

2 Virtually any book on rights in political or legal theory gives a full account. L. W. Sumner, The Moral Foundation of Rights (Oxford: Clarendon Press, 1987), ch. 2 is particularly clear. 3 Judith Jarvis Thomson, The Realm of Rights (Cambridge, MA: Harvard University Press, 1990), p. 135. 4 That rights are peremptory is a commonplace among rights theorists. See e.g. Jeremy Waldron (ed.), Theories of Rights (Oxford: Clarendon Press, 1984), p. 14; Sumner, The Moral Foundation of Rights, pp. 8, 12. To say that rights are peremptory is to make a conceptual point about rights which one can accept even if one thinks that there are no rights. Joseph Raz argues that the duties imposed by rights are peremptory in ruling out certain countervailing reasons rather than that the interests protected by rights are weightier. See Joseph Raz, The Morality of Freedom (Oxford: Clarendon Press, 1986), pp. 195. 5 Judith Jarvis Thomson, Rights, Restitution, and Risk (Cambridge, MA: Harvard University Press, 1986), pp. 51-2.

350

The Right to Bodily Integrity 14

Transplantation and Rights over Our Bodies

could be specified more fully as die right not to be pushed over for no good reason and, because saving a baby is a good reason, the man does not have a right to be infringed upon. Sometimes it is correct to think that the apparent problem of conflict between rights and the good can be avoided by restating the rights. One example is given in chapter 6, where I argue that people whose wishes are not known do not have rights infringed upon when others attempt to follow their wishes as closely as possible. However, some writers argue that rights may never be overridden and, in those cases where we are tempted to think otherwise, what is required is a more careful statement of the right. Unlike these writers, I doubt all overridings can be explained away by restatement. I do not say that the peremptoriness of rights captures common usage. Rights are often taken in a hyperinflationary aspirational sense, standing for any good thing the speaker wishes to be done. But rights should not have their value inflated away. The complaint is not the relatively trivial one that the aspirational are misusing the words; it is the more important complaint that rights, as understood here, have considerable moral weight, and they are held much more sparingly than when taken in the hyperinflationary aspirational sense.7 If we want the concept of rights to mark out special moral weight, we have to be careful how we use it. Otherwise we run the risk of declaring everything to be top priority, which is another way of saying nothing has priority. There is another reason to be careful in ascribing rights. Because claim rights entail duties, they constrain the freedom of people besides the rightholder. Each time we say someone has a right, we say that others must pay the cost of having their freedom restricted. The cost of rights helps explain why people sometimes have interests that are morally considerable but are not protected by a right. Despite being morally considerable, others should not be put under a duty that corresponds to the interest. Examples have to be argued for, since any is likely to be controversial, but here is one from later in the book: people who need an organ to be transplanted into them have a morally important interest but typically no right to the organ. They have no right because no one is under a duty to supply the organ. Even if I have a right to do something, it is an open question whether I ought to do it.8 The man in the earlier example acted immorally in refusing to donate to his son. His right gave him the freedom to choose whether to donate or not, and he exercised his freedom wrongly. Consider also the right of free speech: I may still act selfishly, thoughdessly, spitefully or in some other morally discreditable way in saying something I have a right to say. Having a right to give or withhold your

6 Thomson argues that there are limits to the specification strategy. See Thomson, The Realm of Rights, chs. 3 and 4. John Oberdiek defends specification and criticizes the idea that rights are overridden in 'Specifying Rights Out of Necessity', Oxford Journal of Legal Studies 28 (2008). 7 For these contrasting senses, see Lawrence Gostin (ed.)> Public Health Law and Ethics: A Reader (Berkeley and Los Angeles: University of California Press, 2002), pp. 15-19. Joel Feinberg, Social Philosophy (New Jersey: Englewood Cliffs, 1973), chs. 4-6 remains an excellent guide to different types of rights claim. 8 See Jeremy Waldron, 'A Right to Do Wrong', in his Liberal Rights (Cambridge: Cambridge University Press, 1993).

The Right to Bodily Integrity Bodily integrity

351 15

organ does not tell you whether to give or withhold it. Because the exercise of a right is a matter for moral guidance and appraisal, rights are not the total of ethics. I want to say something here about how rights can protect even relatively trivial exercises of them. It is often said, in discussion of transplantation ethics, that people refuse to donate for poor reasons, for instance because they are squeamish about contemplating their bodies being cut up after death, or because of false beliefs, for instance that agreeing to donate will cause their deaths to be hastened or their bodies to be used in anatomy schools. Perhaps some refusals should be protected, for instance those based on a deep religious commitment, but why, it is asked, should their misguided refusal to donate have a right's protection? Yet there is nothing unusual in trivial exercises of a right. What people do may be for trivial reasons and yet be protected. For instance, New Zealand has political rights which allowed the Bill and Ben Party to form and be included on the 2008 general election ballot paper, and people could vote for it even though it was a joke. It is an interesting question why rights can protect trivial exercises of them. One answer might be that it would be unwise to try to tailor rights to protect only important exercises because then, as in the political case, some authority would have to decide what was and what was not important, a power clearly open to abuse. Another answer might be that rights let people know who is entitled to do what, with benefits in certainty and coordination that would be lost with ad hoc exceptions.9 Still, whatever the explanation, it is clear that rights can protect trivial exercises. Whether they do in the case of organ retrieval remains to be seen. Now we have in hand some of the ideas that underlie rights, we can turn to the rights most relevant in discussions of transplantation. These are rights over our bodies. The next few sections describe and, so far as possible, justify rights of bodily integrity and personal sovereignty. The final sections review political philosophy so as to explain how this chapter's view of rights compares with other views and to defend the rights against certain general criticisms.

BODILY INTEGRITY It is widely accepted that competent people have a right of bodily integrity. Think back to the three examples at the start of this chapter. The man who refused to donate to his son had a right not to have his kidney transplanted even though his refusal was immoral. The woman with cancer was entitled to veto a nephrectomy even though she needed it. We all have a right against our organs being taken, despite an apparent consensus among popular theories of justice in favour of conscription. The examples show the weight of a person's refusal of intrusions into her body. If someone says 'no nephrectomy', then no nephrectomy. As I said, the most natural, and indeed common, way to describe the very significant weight attached to this refusal is to say that the person has a right. 9 T. M. Scanlon, 'Rights, Goals, and Fairness', in his The Difficulty Cambridge University Press, 2003).

of Tolerance (Cambridge:

352

The Right to Bodily Integrity 16

Transplantation and Rights over Our Bodies

Perhaps the most famous statement of the right to bodily integrity is by Justice Cardozo in the case of Schhendorffv. The Society of New York Hospital (1914). Cardozo wrote, 'Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient's consent, commits an assault, for which he is liable in damages/10 There are important and interesting questions about the content of the right to bodily integrity. The right is usually taken to forbid even relatively trivial touching without consent,11 but it does not forbid accidental josding on a bus. Does the right forbid spraying the passenger cabins of aircraft with insecticide while the passengers are in their seats, as used to happen on arrival in New Zealand? Would it forbid spraying people with a vaccine, if that were possible? The right entides people to refuse medical treatment; does it also give them the right to be disconnected from lifesaving machinery? Although these are interesting questions, we can ignore them here. Whatever a right to bodily integrity protects, it certainly protects against the non-consensual removal of one's organs. If we look over the examples, and influential interpretations of the right to bodily integrity, it is clear that it is negative, that is, it is a claim against invasion of the body. The right to bodily integrity is not a right to command that anything happen to one's body. It need not even be the right to permit intrusions into one's body, since the right to bodily integrity might not be one that can be waived through consent. Consider the Jesus Christians, a sect some of whose members want to become living kidney donors for religious reasons. Their right to bodily integrity is no reason to accept their offers, whatever other reasons there may be. If their organs are not taken, they do not thereby suffer an unconsented invasion of their bodies. The right to bodily integrity is thus a limited and negative one. It is also almost entirely uncontroversial and often considered of great weight. To quote another influential statement, 'under a free government at least, the free citizen's first and greatest right, which underlies all the others—the right to the inviolability of his person, in other words, his right to himself—is the subject of universal acquiescence'.1 Indeed, some critics of medico-legal decision-making complain about the insufficiency and obviousness of these rights. Jay Katz, having quoted the courts in Schloendorffxnd. Pratt, notes that they do not go beyond the obvious points about the wrongness of the surgeons' actions and, for all their language of sovereignty, do not give doctors duties actually to inform patients or ensure they understand their options.14 But in not going beyond the obvious, they do state the obvious. 10 Quoted in Jay Katz, The Silent World of Doctor and Patient (Baltimore and London: Johns Hopkins University Press, 2002), p. 51. Mrs Schloendorff, while unconscious, had a fibroid tumour removed contrary to her repeatedly expressed wishes. 11 Thomson, The Realm of Rights, p. 205. 12 I set aside the point that one's right to bodily integrity might be the basis for a positive right that others protect it, for instance through a police force. 13 Pratt v. Davis (1905), quoted in Katz, The Silent World of Doctor and Patienty p. 51. The inviolability of the person' clearly includes the body. Dr Pratt removed Mrs Davis's uterus and ovaries after deceiving her into believing he would only repair some superficial rectal and cervical tears. 14 Katz, The Silent World of Doctor and Patient, pp. 50f. Onora O'Neill makes a similar point about the limited value of a right to refuse treatment, although she says 'Undoubtedly such rights are of great

The Right to Bodily Integrity Bodily integrity

353 17

Why is the right to bodily integrity both uncontroversial and taken to be of such importance? I suspect we simply have solid intuitions about bodily integrity, and those who want to disagree have some hard explaining to do. The intuitions are basic and any moral theory would have to explain them and not conflict with them. Certainly if we think back to the example of killing the healthy man to save five lives, it is hard to see a moral theory that was more plausible than the intuitive conclusion that it is wrong.15 I do not say here that the right to bodily integrity is basic in the sense that it cannot be derived or explained in some deeper theory, only that the intuitions about bodily integrity are not justified by the theory but rather do the justifying of the theory. Let me explain. Judith Jarvis Thomson says the right to bodily integrity is justified by the recognition that people are individuals and not mere cells in an organism.1 She also says that rights over our own bodies underlie our other rights, that we could not have, say, property rights or rights not to be harmed, without also having rights over our bodies. Consider Warren Quinn's explanation of the precedence of negative rights over positive rights. He writes, A person is constituted by his body and mind... For that very reason, it is fitting that he have primary say over what may be done to them—not because such an arrangement best promotes overall human welfare, but because any arrangement that denied him that say would be a grave indignity. In giving him this authority, this morality recognizes his existence as an individual with ends of his own—an independent being.17

Some writers try, then, to locate a right to bodily integrity within theories of rights and value. Nonetheless, the role that bodily integrity plays is not that of derived conclusion. While bodily integrity may logically follow from the deeper theories, normatively the justification goes the other way. The theories themselves are justified because of intuitions about bodily integrity.18 For instance, Quinn is basing his views about negative rights on the intuitions he assumes we share about the especial horrors of assaults on our minds and, to a lesser but still very important extent, our bodies. Bear in mind that bodily integrity is both uncontroversial and weighty when we later come to controversy within political commentary and bioethics about rights, about whether they are given too much significance, and whether they are inconsistent with community or with people's responsibilities. In the initial three examples, even critics of rights agree that people's kidneys may not be taken, which suggests that people have at least some rights and they trump many other considerations.

value.' See Onora O' Neill Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002), p. 26. 1 Thomson, Realm of Rights, p. 135. As Bernard Williams wrote about infanticide '... "You can't kill that, it's a child" is more convincing as a reason than any reason which might be advanced for its being a reason...' Moral Luck (Cambridge: Cambridge University Press, 1981), p. 81. ^Thomson, Realm of Rights ch. 8. 17 Warren Quinn, Morality and Action (Cambridge: Cambridge University Press, 1993), p. 170 (emphasis in original). See also pp. 170-2. 18 Compare Raz, The Morality of Freedom, pp. 168-70, on core and derivative rights.

354

The Right to Bodily Integrity

18

Transplantation and Rights over Our Bodies PERSONAL SOVEREIGNTY

Although considerations of bodily integrity justify weighty rights over our body, those rights are limited in scope. We surely have rights over our bodies in addition to those protecting us from invasion. In the initial example, the father who refused to donate a kidney to his son could not be made to. But suppose he had wanted to donate a kidney. Both refusal and offer are choices about one's body, but only the father's refusal is protected by a right of bodily integrity. If the father were not allowed to donate his kidney, his body would remain intact and its integrity uninvaded. Yet we may well think the decision to donate should be up to him. It is his body. The most common way to express the idea that people should decide what to do with their own bodies is in terms of autonomy. Since autonomy means 'self-rule', it is a proper term to use. However, autonomy is variously used to describe a view of free will, independence in decision-making, and the authentic realization of values, none of which I want to be committed to. So I shall follow Joel Feinberg in using 'personal sovereignty' rather than autonomy to describe the model of claims over one's body that I favour, personal sovereignty being only one limited interpretation of autonomy. Much of the task of defending personal sovereignty consists in sharpening up its description and the analysis of opposing claims. This section only begins the task; the rest of the book does much more. Consider this analogy to the wish to donate: if a man or woman voluntarily chooses to have a surgical operation that will render him or her infertile and a physician is perfectly willing to perform it, then the person's 'bodily autonomy' is infringed if the state forbids it on some such grounds as wickedness or imprudence. If no other interests are directly involved, the decision is the person's own and 'nobody else's business,* as we say, or *a matter between the person and his/her doctor only.'19

By analogy, the decision to donate gives the state a duty not to interfere in the consensual links between willing donor and willing doctor. People may make imprudent decisions or 'wicked' decisions (where the wickedness is of a sort that does not harm others), but what they decide to do should not be prohibited by the state. However, note the quotation's qualifications: the assertion of individual freedom to act assumes that the decisions are voluntary and the acts would not directly affect the interests of others. Donating organs or seeking sterilization are just two examples where we may think people have rights over their bodies that go beyond the right to veto invasions of bodily integrity. At first glance, consensual sex, consensual cohabitation, freedom of movement, or the freedom to eat unhealthily are other examples of decisions beyond bodily integrity that it is widely accepted the parties involved should be free to make. Perhaps die most important way in which the rights go beyond bodily integrity is in protecting the ability to forge links with consenting others. As I said

19

Joel Feinberg, Harm to Self (New York: Oxford University Press, 1986), p. 53.

The Right to Bodily Integrity Personal sovereignty

355 19

earlier, I shall classify these rights over the body under the heading of 'personal sovereignty'. Feinberg takes personal sovereignty to be 'dejure self-government interpreted on the analogy to a political state, as sovereign authority to govern oneself that is absolute within one's own moral boundaries'. His idea of personal sovereignty is that we have a sphere within which we may decide what happens—we are sovereign—and this sphere consists of what is personal to us —hence 'personal sovereignty'. As for what is within the sphere, he writes, the kernel of the idea of autonomy is the right to make choices and decisions—what to put into my body, what contacts with my body to permit, where and how to move my body through public space, how to use my chattels and physical property, what personal information to disclose to others, what information to conceal, and more.21

Whatever exactly is within this sphere, it should include decisions about our bodies. Our bodies—unlike property in the external world—are as personal to us as anything can be. Feinberg's view that people should be sovereign within their spheres is limited to decisions made by people who are capable of autonomy, and whose decisions satisfy some requirement of voluntariness, which rules out choices that are coerced, manipulated, made in the absence of adequate information, while drunk, and so on. Obviously, all of these conditions require a good deal of elaboration, which Feinberg supplies, but let us take it that the conditions are undemanding enough to allow for at least most adults' decisions to satisfy them. As with bodily integrity, the thesis that we ought to be personally sovereign rests on intuitions that cannot be demonstrated. Perhaps the most persuasive summary way of putting it is that people ought to be able to run their own lives and, if we ask what counts as within one's own life, decisions about one's body certainly do. In related and more philosophical terms, David Archard writes, The giving and withholding of consent fixes what is permissible and impermissible in our relations to others, and has this power as an expression of our fundamental moral status as independent, self-governing agents entitled to determine what may and may not be done to us.' The quotation nicely brings out the core intuition that each of us should be able to run our own lives, which both limits what we may do to others and what they may do to us. Out of the core intuition, one needs to construct a model which describes and explains how the decisions are supposed to fit with the interests of others or with decisions that are bad for the person deciding. The models can become rather elaborate. As we go through a model's needed qualifications, explanations, and sub-arguments, and try to fit it with other theories, we must not lose sight of the summary statement that people should be able to run their own lives. 20

Joel Feinberg, Harmless Wrongdoing (New York: Oxford University Press, 1990), p. xvii. Feinberg, Harm to Self, p. 54. 22 The quotation is from David Archard's untitled review of Joan McGregor et al., Journal of Applied Philosophy 24 (2007), pp. 209-10. 21

356

The Right to Bodily Integrity 20

Transplantation and Rights over Our Bodies

It is all very well to say people should be able to run their own lives, but what if they would make decisions that are bad for them or others? To take a concrete, if daft, example from Amartya Sen: we might think people should be free to wear miniskirts, but would we still think that if doing so caused cancer in the eye of the beholder?23 What if miniskirts caused cancer in those who wore them? When it comes to harms that we cause ourselves, Feinberg's all-things-considered view is that people should be able to make these choices for themselves even if they turn out to be catastrophic. This conclusion is not as hardline (or implausible) as it might seem. Feinberg, recall, is restricting his claims about the personal sphere to decisions that are voluntary, and this does not include decisions made by young children, or the grossly misinformed, or the coerced, or the drunk. No doubt many or most of the decisions a person would make that are truly disastrous to herself would not receive the protection of personal sovereignty that Feinberg has in mind. Nonetheless, some believe that Feinberg goes too far in letting people harm themselves. In chapter 8, I consider ways in which personal sovereignty might be weakened to permit some paternalism. They turn out to make little difference when it comes to organ transplantation. What, then, of decisions that are disastrous or even just bad for other people? There are two relevant points to make here. First, not every bad effect on a person counts as a harm. Fleeting distaste does not, for instance. A harm must be a setback to an interest.2 A 'harm to others' principle would not sanction interferences with free action on the strength of other people's mere dislikes. Second, a harm to others principle does not say just any harm caused by someone's action is enough to justify preventing it. To take a well-known example, if I beat you in a competitive examination, I might well have harmed you, but my beating you should not be prevented.25 The harm caused to others is a reason to be weighed in favour of prevention, but it is a reason that might be outweighed by, for instance, the importance of free action or the social benefits of competition. Thus it is quite possible that, even if an action did cause harm to others, the interest in it would justify allowing someone to carry on. If others would suffer harm from our decisions about our bodies, there is a reason against our being allowed to make the decisions. But the reason to let us decide about our bodies will usually be stronger. The idea that people should run their own lives is often expressed in terms of a private sphere with absolute powers of decision. It is an old criticism of liberalism that no decisions are purely self-regarding and what people choose to do does not affect only them.2 The interest in controlling our bodies can be set against other 23

A. Sen, Collective Choice and Social Welfare (San Francisco: Holden-Day Inc., 1970), p. 60. Feinberg, Harm to Others, pp. 45-6. Much of Feinberg's four volumes on the limits to the criminal law are about how to arbitrate between personal claims and the avoidance of harm to others. They are intended to provide a much-needed elaboration of John Stuart Mill's principle of liberty. 2 Feinberg, Harm to Others, p. 219; J. S. Mill On Liberty (Harmondsworth: Penguin English Library, 1982), ch. 5, part 3. 26 Patrick Devlin, The Enforcement of Morals (London: Oxford University Press, 1965). Feinberg's solution to this problem is to fall back on qualifications to self-regarding. What counts is not that a decision is purely self-regarding, which would be at least rare, but that it is 'chiefly or 'primarily* selfregarding. See Harm to Self, p. 56. 24

The Right to Bodily Integrity Conflicts with personal sovereignty

357 21

people's claims in two different ways. One is to keep the sphere of decision, within which our authority to govern is absolute, but have its borders fluctuate according to the interests of others. The authority to govern would be protected by a right that is specified so it does not conflict with the weightier interests of others. The other is to have the interest in bodily control protected by a right that is not absolute. The right could be overridden by the interests of others or, in other words, the interests of others could, in certain circumstances, make infringing on a right justifiable. It does not gready matter for our purposes whether we adopt the specification strategy or the overriding strategy, or both. The important point is that people have a claim to determine what happens to their own bodies that is weighty enough to be normally decisive and which should be protected by a right. As I said, the rights of personal sovereignty go beyond the limited rights of bodily integrity in allowing people to forge links with others. That is why, in Feinberg's example of voluntary sterilization, people should be allowed to have the operation. But the rights are negative, rights to be free from interference. For anything said here, personal sovereignty does not give a doctor a duty to perform the sterilization. To take another example, the state has a duty not to ban interracial cohabitation because people have a right to cohabit with whomever they wish who is willing and able to consent to cohabiting with them. The right to cohabit with someone from another race is not the right to have a partner of another race supplied. Many writers believe that personal autonomy requires more than the absence of interference and needs positive rights too, that is, rights to be supplied with the resources they need to run their lives. Other writers have doubts about positive rights. I do not take a stand on this here; I merely want to note that doubts about positive rights are not relevant to the negative rights of personal sovereignty. Although the rights of personal sovereignty are negative, the implications of personal sovereignty may not be. We may have reasons to help people run their own lives even though our reasons are not duties correlative to their rights. Suppose you want to borrow some money from me to pay to study for a law degree. You have no right to the money. If I withhold the loan because I think you would be better off doing something other than a law degree, I fail to honour your personal sovereignty although I infringe on no right of yours. If, by contrast, I do not give you the money because I want it to help someone else, I do not fail in any way to honour your personal sovereignty. I make these points again in a section of chapter 8 on doctors' entitlements to refuse to transplant organs.

CONFLICTS WITH PERSONAL SOVEREIGNTY Whereas bodily integrity is both largely uncontroversial and a solid element in our moral thinking, personal sovereignty is more controversial. The personal sovereignty model says that people should be able to make choices over what happens to and how they use their own bodies. On the face of it, this model is inconsistent with common practices in many countries. Medicines are regulated: substances cannot be called medicines unless they have been approved through some regulatory

358

The Right to Bodily Integrity 22

Transplantation and Rights over Our Bodies

regime, and even then access to them is often under the control of doctors. Many countries make people wear helmets when riding motorcycles or seatbelts when in cars. Substantial bodily harm is an exception to volenti nonfit inuria (to one who consents, no harm is done): a person causing such harm commits an offence no matter how voluntary the consent of the victim (or Victim'). There are limits to what one can contract to. For instance, someone in breach of a labour contract typically may not be forced to do what was promised, even if the contract included a waiver of the right against specific performance. And, to take an example of direct interest, many countries criminalize the sale or attempted sale of organs. All of these look like examples where the model of personal sovereignty is not followed. When the examples involve transplantation, as the sale of organs does, they will be considered in detail later on. It is worth foreshadowing briefly here some of the responses to the apparent conflict between personal sovereignty and legal and social rules. One response is to say that if personal sovereignty really does conflict with a rule, so much the worse for the rule. The conflicting exceptions do not stand up to critical scrutiny precisely because they conflict with personal sovereignty. Another response is to say that, in the event of a conflict, personal sovereignty must yield or be abandoned. Perhaps, if we reflectively endorse the rule, the sphere in which personal choice is sovereign should have its boundaries drawn differendy, or perhaps we should look for some different account of the rights we have over our own bodies. A third response is to deny that the apparent exceptions to personal sovereignty really are exceptions. Consider, for instance, the regulation of medicines, which limits what we can put into our bodies. This limit need not restrict personal sovereignty. Many people welcome regulation so that they themselves do not have to sort the good medicines from the bad and useless, at considerable cost in time and risk of error. Put like that, regulation can be thought of as a sovereign delegation of decision-making, in which case it gives effect to personal sovereignty rather than conflicting with it. The personal sovereignty model is sophisticated enough not to require that people make their own choices. People often have choices about their choices. This section was the merest sketch. More will be said in the relevant chapters about conflicts with personal sovereignty.

PERSONAL SOVEREIGNTY AND INFORMED CONSENT Informed consent is at the heart of modern medical ethics. In sum, informed consent is public consent given voluntarily with an adequate understanding of the relevant facts. The requirement of public consent makes consent formal and visible, and not identical with an approving state of mind. The requirement of voluntariness rules out coercion, force, and manipulation. It also rules out choices made by those without the capacity for voluntary choice, such as the heavily drunk or young children. The requirement of adequate understanding is often taken to impose a duty on whoever is seeking consent to ensure that the information is put in such a way that it is accurate and understandable and, more demandingly, actually

The Right to Bodily Integrity Personal sovereignty and informed consent

359 23

understood. The requirement of relevant facts sets a disclosure requirement for those seeking consent and a limit to the facts that need be disclosed. 7 We must be careful not to fetishize informed consent. Consent is not a freestanding principle with independent moral force.28 Consent is second order, arising out of some entitlement such as a right over our own bodies. That is why you, a stranger, cannot consent to an operation on me; you do not have a right over my body. The connection between informed consent and personal sovereignty is largely a conceptual one. The personal sovereignty model is a way of capturing the idea that people should rule themselves. The way to have people ruling themselves is to let them make decisions about themselves in an informed way. There are other reasons for informed consent besides the direct conceptual connection between personal sovereignty and informed consent. One is the connection between the wishes of patients and their well-being. It is often argued that people are the best judges of their own interests, and so having people make choices for themselves will typically be better for them than having the decisions made by someone else. (Hedging and caveats are needed to make the best-judge view plausible.) Another reason for informed consent is its prophylactic role in preventing abuse and mistake. A patient could be treated without giving informed consent although he or she wanted the treatment and would have consented anyway. But a rule against treatment without consent protects against treatment that a patient did not want and would not have consented to. After all, if it is possible to get consent, why would someone not try, unless for bad motives? Although they are conceptually connected, requiring informed consent is not always a sufficient or ideal way to respect personal sovereignty. First, consent is not enough because it implies a choice from among a limited menu of alternatives. Choice from a limited menu fails to capture the idea that people can forge their own links with consenting others. Second, the connection between informed consent and personal sovereignty needs qualifying to take account of the earlier point about delegation. People do not simply have choices and preferences on one level; they have choices and preferences about their choices. People often want to delegate decision-making to save themselves effort or to increase the chances that the decisions will better, as judged by their own lights. Delegation is a familiar phenomenon and an expression of personal sovereignty. Suppose people wish to delegate their medical decisions, as they often do when, for instance, they ask doctors 'What would you do?' Some practitioners act as if they believe patients should be forced to give informed consent as a condition of treatment and should not be allowed to avoid considering the costs and benefits. Whatever the merits of this view, it is not one justified by respect for personal sovereignty or, at least, not direcdy.

27

T. M. Wilkinson, 'Research, Informed Consent, and the Limits of Disclosure' Bioethics 15 (2001). 28 Neil Manson and Onora O'Neill, Rethinking Informed Consent in Bioethics (Cambridge: Cambridge University Press, 2007), pp. 72-7.

360

The Right to Bodily Integrity 24

Transplantation and Rights over Our Bodies

Third, the prophylactic reason for consent sets a default rule: in the absence of consent, the patient may not be treated. This rule makes less sense when it is not possible to get consent from the patient, for instance when the patient is unconscious (or dead). Everyone recognizes that treatment should not be denied to the unconscious on the grounds that they have not consented, so no one endorses the 'no treatment* default rule in that case. But it is quite common to argue that certain things may not be done to the dead, even when there are grounds for believing they would have wanted them to be done, when they had not consented in advance. This conclusion, I shall argue in chapter 6, is one example where fixating on consent fails to serve its underlying values.

SELF-OWNERSHIP AND PROPERTY RIGHTS Personal sovereignty is not the only model of rights over our bodies. Another philosophically prominent model is self-ownership. According to this model, we own ourselves, meaning we have property rights in ourselves. I spend litde time on self-ownership because I doubt it is an alternative to personal sovereignty that is both genuine and plausible. As I shall explain, self-ownership is either a redescription of personal sovereignty, so plausible but not a genuine alternative; or it is genuinely different, but in ways which make it implausible. Put as simply as 'we own ourselves', self-ownership could be a way of saying the same thing as personal sovereignty but in different language. Self-ownership would obviously then not be an alternative to personal sovereignty at all.29 Strikingly, the common arguments for the thesis of self-ownership rely on the same intuitions as those that motivated the model of personal sovereignty.30 That is, people are selfowners because they ought to be in control of themselves and not under the control of others. How, then, could self-ownership differ from personal sovereignty? The version of self-ownership that has attracted the most philosophical attention is found within libertarian political philosophy. The libertarian version contains distinctive elements. Libertarians use self-ownership to argue for a right against taxation of the income from one's labour or for rights to alienate oneself, for instance through voluntary slavery.31 The personal sovereignty model I have described need not have these radical implications for taxation and contract, 29 Thomson's discussion of first property is much like this. See The Realm of Rights, ch. 8. See too David Archard, 'Informed Consent: Autonomy and Self-ownership' Journal of Applied Philosophy 25 (2008). 30 Although I should mention Hillel Steiner's arguments, which purport to be non-moral and conceptual. For him, competent adults start off with equal rights (which they can waive and alienate) because the alternatives are either that people have no rights, which would cause insoluble moral deadlock, or that some have rights over others, a position for which no non-arbitrary reason can be given. See An Essay on Rights (Oxford: Basil Blackwell, 1994). 31 Robert Nozick, Anarchy>, State, and Utopia (Oxford: Basil Blackwell, 1974) is the best-known work of libertarian political philosophy, and he makes these claims about self-ownership. G. A. Cohen is the most important philosophical critic. See his Self-Ownership, Freedom, and Equality (Cambridge: Cambridge University Press, 1995).

The Right to Bodily Integrity Criticisms of rights

361 25

which is a benefit of the personal sovereignty model, since the implications are highly controversial (and implausible). The self-ownership model takes its rights to be property rights.32 Some writers on transplantation, who are not libertarian, also argue that people do or should have property rights in their own body parts. For them, the virtue of property rights lies in their greater certainty. For example, rules about intestacy could be applied to organs when the deceased had not made their wishes known.33 But many dislike the idea of property rights in bodies and others think it is a conceptual misdescription. These are large disputes, to be avoided if possible in thinking about transplantation. Insofar as the aim is greater certainty, we need not setde the question of property rights. Certainty requires setting out who is allowed to decide what. Arguing about whether having the right to decide is a property right is secondary. Both personal sovereignty and self-ownership, in its libertarian version, would rule out conscription of organs from the living, or the dead, if rights extend beyond people's deaths. As for living donor transplantation, and controversies over what organs may be donated, both views would at first glance say that one's organs are one's own to dispose of as one wishes, which is compatible both with condemning morally certain ways of exercising those rights and with being sensitive to the ways in which people's voluntariness might be compromised. At this stage, then, it is hard to see how self-ownership or personal sovereignty would differ in what they had to say about organ retrieval. Both would require developing if they are to be properly compared and contrasted. However, to avoid being sidetracked, I shall concentrate on developing the personal sovereignty model. That has the polemical advantages of not being tied to concepts of property and ownership, and not being associated with libertarianism, all of which tend to put off* those who are not libertarians.

CRITICISMS OF RIGHTS In political philosophy, rights have been criticized for their metaphysical extravagance, requiring non-existent entities; for being pernicious in encouraging anarchy; for encouraging or at least being based on selfishness; and for representing and causing 'atomism' rather than community.3 A proper discussion of these classical criticisms would be too far off the point of a book on transplantation, and there are in any case plenty of proper discussions—indeed, refutations—available.35

3

Steiner, An Essay on Rights, claims that to do the job of rights, rights must be property rights. David Price, Human Tissue in Transplantation and Research: A Model Legal and Ethical Donation Framework (Cambridge: Cambridge University Press, 2009), ch. 8. 34 See Jeremy Waldron (ed.), Nonsense Upon Stilts (London: Methuen and Co., 1987) for excerpts from Bentham, Burke, and Marx that make these criticisms as well as for a long essay by Waldron defending rights. 35 Among these, see Stephen Holmes, The Anatomy of Antiliberalism (Cambridge, MA: Harvard University Press, 1993). 33

362

The Right to Bodily Integrity 26

Transplantation and Rights over Our Bodies

I want to respond to the criticisms of rights talk that seem to come up in discussion of transplantation, criticisms which have affinities with the classical objections. There seem to be three main ones: that rights are typically unfounded; that to talk of rights involves a needless circuit; and that rights are excessively individualistic. The worry that rights are unfounded is sparked by the countless writings in bioethics that seem to pluck rights from thin air.3 An assertion of a right has to be justified, and still more does it have to be justified when the right would impose duties. In the sense that a right must be justified, rights must be the conclusions of an argument. However, rights to bodily integrity and personal sovereignty are not plucked from thin air. I have tried to justify the rights by pointing to the ways in which they are supported by fundamental intuitions. The worry that rights involve a needless circuit can be explained like this: given that rights talk can be translated into talk about duties, and given that rights have to be justified in terms of the importance of the interests or choices they protect, anything said about rights can be said in other ways, and said better. So citing rights is at least poindess and perhaps unhelpful. The reply is, in a sense, the whole book, which shows that citing rights has a point and does help. I think that, given the importance of organs in saving lives and improving their quality, ordinary thinking about the ethical and legal consent regime presupposes some idea that is equivalent to or very close to rights. Moreover, the sophisticated legal and philosophical discussion of rights includes ideas about overriding rights and specifying them carefully that can be fruitfully applied to the topics of the book. To be sure, what is put in terms of rights could be put in some other way. But it would be more convoluted, perhaps misleading, and would mischaracterize what people care about. There can be, furthermore, an advantage in framing a discussion in terms of rights. People often agree on what should be done without agreeing on the underlying reasons. Cass Sunstein argues that policy should search for 'incompletely theorized agreements on what to do—agreements on the right practice amidst disagreements or confusions about the specific theory that best justifies that practice'.37 Rights can be the basis for just such agreements because people often accept that certain interests should be protected even as they disagree about why. An example is the right to non-interference with our bodies, which may be defended on the differing grounds of autonomy, well-being, or self-ownership. The final criticism I want to consider is that rights are objectionably individualist. The root idea is that rights protect individuals' interests at the expense of a wider grouping, whether family, community, nation, or world, and rights give too much weight to the individuals' interests or else wrongly presuppose that their interests are separate to, even antagonistic to, the interests of the wider group. The criticism

36

Norman Daniels, Just Health (Cambridge: Cambridge University Press, 2008), pp. 14-15. Cass Sunstein, Worst-case Scenarios (Cambridge, MA: Harvard University Press, 2007), p. 121 (emphasis in original). 37

The Right to Bodily Integrity Criticisms of rights

363 27

arises partly because of the historical connection between rights and the moral individualism of the liberal tradition. Rights are certainly individualistic in the sense that, as Carl Wellman writes, 'Every right is possessed by some individual right-holder'. But'... these possessors need not be individual persons'.38 Rights may be held by groups too, as they obviously are when held by corporations and other artificial persons. Wellman continues: 'it is essential that each right and each right-holder be individual in the adjectival sense defined as "Existing as a separate indivisible entity... Single as distinct from others of the same kind" . Wellman's view is common across many conceptual accounts of rights. The concept of rights does not presuppose anything about the separate interests of individual humans. The individualism of the concept of rights is only contingently connected to the moral individualism of the liberal tradition. Nonetheless, this book does defend an account of rights recognizably within the liberal tradition, so the charge of excessive individualism will have to be confronted more directly. The view that we each have rights to make our decisions and act on them is an individualistic view. It says that individuals should not have things done to them or be prevented from acting or be forced to act in certain ways if they do not want to, whether by the state, their community, or their family. But this is a view about what people's rights are. It is not a view about how people would or ought to exercise their rights. If people wish to make their decisions for themselves without consulting their families, then the personal sovereignty model permits this. But it also permits people to consult as widely as they wish and defer to the decisions of their families, community leaders, religious leaders, or whomever. So the personal sovereignty model does not see people as selfish or solitary (or altruistic or community-minded). It does not look to the reasons people have for exercising their rights at all. ° That some rights exist should not be controversial because rights to bodily integrity are not controversial. Even the man who refused to donate a kidney to his son had his selfish refusal protected by a right. Why, in the face of the example of bodily integrity, would anyone reject the thesis that we have rights? Some critics of rights claim they presuppose selfishness and hostility between people, and they look forward to a world of better social relations, without rights.41 Two quotations serve as a reply. Jonathan Wolff writes, 'A society in which we need to protect ourselves [from others]... is not the best society we can imagine, and surely we can hope for better. To which the defender of rights will reply: hope all you like, but don't give up your rights in the meantime.' And Jon Elster writes, 'one

38

Carl Wellman, A Theory of Rights (Totowa, NJ: Rowman and Allanheld, 1985), p. 185. Ibid. 40 Recall the earlier point that rights are not the whole of ethics. They are not because having a right does not determine how one ought to exercise it. 1 See Karl Marx, in 'On the Jewish Question*, reprinted in Waldron (ed.)> Nonsense Upon Stilts, and echoed by some communitarian and feminist writers. 42 Jonathan Wolff, WhyReadMarx Today? (New York: Oxford University Press, 2002), pp. 106-7. I would go further and say people retain their rights even in a society so fortunate that no one wanted to violate them. 'It is wrong to murder' would not be false simply because it never occurs to anyone to murder, and nor would the closely-related statement: 'People have a right not to be murdered.' 39

364

The Right to Bodily Integrity 28

Transplantation and Rights over Our Bodies

cannot assume that one will in fact approach the good society by acting as if one had already arrived there*. 3 CONCLUSION The ethics of acquiring organs for transplantation turns on our rights over our own bodies. This chapter has explained and defended the idea of moral rights, and argued that we have rights of bodily integrity and personal sovereignty. However, the tacit assumption has been that we are considering the rights of people who are alive whereas many of the ethical problems are about how to acquire organs from the dead. How could it make any difference what is done to the dead? How could they have posthumous rights? These are the subjects of the next two chapters.

43 Jon Elster, The Market and the Forum: Three Varieties of Political Theory', in Jon Elster and Aanund Hylland (eds.)> Foundations of Social Choice Theory (Cambridge: Cambridge University Press, 1986), p. 119.

[14] Confiscating Live Body Parts Cecile Fabre 5.1 INTRODUCTION We have just seen that justice requires that those who need organs in order to lead a minimally flourishing life have a right that the able-bodied make their organs available to them posthumously. Does it require that they have that right against the able-bodied whilst the latter are alive? To be sure, it may be that were we to take organs from dead bodies as a matter of course, patients' needs for livers, kidneys, corneas, and so on would be met. However, blood and bone marrow must be transplanted live, and, in some cases, the only eligible suppliers of, say, kidneys and livers might well be live individuals. For all these reasons, the question of the confiscation of live body parts must be addressed. Interestingly enough, although it has not exercised theorists of distributive justice, it has exercised some moral philosophers. Thus, J. Harris argues that it would be permissible, from a utilitarian point of view, to take a live person's organs, thereby killing her, in order to save the life of two persons; J. J. Thomson, for her part, claims that it is not permissible to do so, except in one case: if someone maims some other individuals in the hope that they will die, and is thereby responsible for the fact that they need organs as a matter of life and death, it is not unjust to take his organs so as to save his victims' lives, thereby killing him. In this book, I reject the kind of utilitarianism posited by Harris; and I focus on issues of distributive, as opposed to retributive, justice. I therefore do not discuss either view.l Rather, my aim is to defend the following two claims: (1) if one thinks that the badly off have a moral right, as a matter of justice, to the material resources they need in order to lead a minimally flourishing life, then, in some cases to be described below, one must be committed to conferring on the sick a moral right that the able-bodied supply them the body parts they need in order to lead such a life; (2) one can confer such a right on the sick without compromising the autonomy of the able-bodied to an unacceptable extent. I make an argument to that effect in section 5.2. In section 5.3,1 rebut two objections to it, to wit: to confer on the sick a right to the live body parts of the able-bodied (a) violates the 1 See J. Harris, The Survival Lottery', Philosophy 50 (1975): 81-7; J. J. Thomson, Rights, Restitution* and Risk, ch. 6.

366

The Right to Bodily Integrity

Confiscating Live Body Parts

99

bodily integrity of the latter, and (b) constitutes too much of an interference in their life. Finally, in section 5.4,1 consider an unpalatable, and possible, implication of my arguments in favour of the duties to provide personal services and body parts, namely, the coercively directed provision of sexual and reproductive services. Before I start, I should make it clear that I shall not consider whether it is ethically acceptable to take body parts from under-age children, animals, individuals in a persistent vegetative state, aborted foetuses, and mentally disabled individuals. As indicated in Chapter 1, my concern is with what persons owe one another. Nor shall I deal with the difficult question of how to allocate body parts amongst the sick.2 My main concern, in sum, is to show that, assuming agreement on eligibility criteria for medical treatment, the sick have a right, as a matter of justice, to (some of) the body parts of healthy adults.

5.2 ARGUING FOR THE CONFISCATION OF LIVE BODY PARTS I pointed out at the outset of this book that very few philosophers address the question of the demands of justice with respect to our body. Eric Rakowski is one of those who do. In his view, justice requires that people have equal amounts of mental, material, and physical resources and be compensated for unchosen addictions. It sanctions voluntary arrangements whereby adults enter pools of suppliers and receivers of organs, as well as the compulsory taking of organs from minors—who are not capable of making the decision to enter such a pool. Rakowski claims that enough people would enter such schemes to meet the need for organs.3 It is unclear to me whether he is correct, for the likelihood of ever needing an organ is very small, and it is therefore entirely conceivable that someone may decide to take a calculated risk, and not to enter a pool of donors/receivers. As Rakowski himself concedes, a situation may well arise, then, where the only eligible supplier for a given patient turns out to be someone who has elected not to enter such a pool and who is therefore under no obligation 2 In particular, I do not take a stand on the following questions. Is someone eligible for a transplant simply in virtue of needing an organ at time f ? Is someone eligible for a transplant if she will have had a minimally flourishing life overall, even though she will not have led one from the moment she needs die transplant? Those questions also arise when the allocation of material resources is at issue: it also matters there whether the decisive factor, when determining someone's eligibility for help, is the overall quality of her life over time or the mere existence of her need at time t. Advocates of coercive taxation for the purpose of helping the needy do not pay much attention to this issue, and tend to assume that someone has a right to receive help at t if she is needy at t (and provided that no one else is needier than she is, that there are enough resources to help her, etc). 3 E. Rakowski, EqualJustice (Oxford: Oxford University Press, 1991), ch. 8. For a similar view, see R. Audi, The Morality and Utility of Organ Transplantation*, Utilitas 8 (1996): 140-58, at 148-9.

The Right to Bodily Integrity

100

Confiscating Live Body Parts

to make his organs available. In such a situation, equality of (physical resources) would not obtain. Rakowski's proposal is rather modest, since individuals must consent to be considered as suppliers in order to be held under a duty to supply. By contrast, in arguing for the compulsory taking of live body parts, I am arguing that it is unjust to deny one's organs to those who need them, even if one does not consent to be considered as a supplier, where what is at stake is the possibility for them to lead a minimally flourishing life, and a fortiori to survive. To put it differently: the sick, or so I argue, have a moral right against the able-bodied that the latter give them (some of) their body parts whilst alive. Now, we saw in Chapter 4 that body parts are the kind of goods of which it makes sense to say that one can have a right to them. At this juncture, however, it is worth revisiting that claim. There I argued that the provision of a good can be protected by a right if the good is such that to be under a duty to transfer it to someone else does not undermine our personhood. I then pointed out that to be under a posthumous duty to transfer our body parts meets that condition, since we no longer have an intimate connection with our body once we are dead. However, whilst we are alive, and in those cases where transferring a body part to someone else would cause us to die, being under such a duty will destroy us as a person (since we cease to be a person when we die). Accordingly, justice cannot require of us that we divest ourselves of our brain, our heart, our lungs, and the whole of our liver. Of course, that it cannot do so is contingent on the state of medical technology, for the simple reason that the fact that losing our heart, lungs, or liver would destroy us as a person is so contingent. Suppose someone needs a heart, that I am a compatible donor, and that my heart (unlike the patient's) could be replaced by a machine. If I had to transfer my heart to that patient, under such conditions, I would not cease to be a person. One can imagine similar scenarios involving the lungs and the whole liver (but not the brain). In any event, as long as we have not developed the relevant technologies, justice cannot require of us that we divest ourselves of the aforementioned body parts. However, it can—which is not to say (yet) that it does—require of us that we transfer our kidneys, corneas, blood, bone marrow, and part of our liver, since we would still be a person even if we were under a duty to transfer them to the sick. As I conceded in Chapter 4, the claim that body parts can be regarded as resources to be redistributed will sound odd to many. But, as I noted there, if the conception of personhood I sketched in section 1.2.1 is correct, whereby one must have, and continually perceive oneself as having, a body in order to be a person, then, as a would-be organ supplier, I can envision my dead body being divested of its essential organs without my person being under threat. And I can, in turn, quite easily conceive of my organs as resources for someone else. Here, however, I claim that they ought to be conceived of as resources to be distributed even when the suppliers are alive. And that may seem deeply wrong. For,

367

368

The Right to Bodily Integrity

Confiscating Live Body Parts

101

if having a body is necessary to being a person, surely, one might be tempted to insist, we cannot really think of it as a set of resources. Remember Sartre's words: 'I am not in relation to my hand in the same utilizing attitude as I am in relation to [my] pen/4 Recall Dworkin's argument to the effect that body parts should not be regarded as social resources, on the grounds that they belong not to someone's circumstances, but rather are part of his person.5 And consider Fried's claim, to the effect that 'certain attributes—for instance one's bodily organs ... are so closely related to a conception of oneself that to make them available for trading-offin a scheme of morality would be, as it were, to gain the world and lose one's soul'.6 However, there are three related points to be made which support the view that live body parts are resources in the sense in which things are resources. First, we need them both in order to implement our conception of the good; lacking either of them, let alone both, may constitute a serious handicap; and they can be taken away from us without our ceasing to exist as a person. I do not mean to imply that we ought to relate to our kidneys, corneas, blood, and bone marrow exactly as we relate to other resources which we are in a position to transfer to those who need them, such as wealth: indeed nothing I have said so far implies that we ought to be able to detach ourselves from our body parts just as we ought to be able to detach ourselves from the money which we have deposited at the bank and on which we have to pay taxes, or from a plot of land which we have bought and from which we are expropriated. Rather, I only mean to suggest that we ought not to be so attached to them as to consider them essential to being a person tout court. Indeed, that we do not have the same utilizing attitude to our hand as to our pen does nevertheless allow for the fact that we can and do regard our hand as an instrument, with the qualification that we do not only regard it as such. Second, as we saw in section 1.2.1, although we cease to exist when our body and brain cease to exist, we are more than the sum total of our body. Accordingly, we can distance ourselves from its parts, and talk about them, as if they were not parts of ourselves. Although Sartre is right to note that we do not relate to our hand as we relate to our pen, he goes too far when claiming that he uses his pen in order to form letters but not his hands in order to hold the pen. As he puts it, 'I am my hand.'7 However, we do use our hand in order to hold the pen and our fingers in order to hit the computer's keys. We are aware that they can perform tasks that our feet cannot. We are also aware that in other respects, they will not do: we use a screwdriver precisely because we know that our fingers are 4

5 Sartre, Being and Nothingness, p. 373. Dworkin, 'Comment on Narveson', at 39. C. Fried, An Anatomy of Values (Cambridge, Mass.: Harvard University Press, 1970), p. 205. For a devastating rebuttal of Fried's and Dworkin's objecdons to the mandatory taking of organs, see Rakowski, EqualJustice, pp. 183-8. 7 Sartre, Being and Nothingness, p. 373. 6

The Right to Bodily Integrity

102

Confiscating Live Body Parts

not strong enough for the task of screwing a shelf on to the wall. We simply are not our hands. It is /who write, and not my hand; it is /who smile, and not my mouth; it is /who experience humour, and not that part of my brain which does. And so on. Third, Sartre's claim that his attitude to his hand is different from his attitude to his pen derives whatever strength it has from being a claim about the hand; it would be equally strong, or almost as strong, I think, if it distinguished the foot from the shoe, and the eyes from the glasses. But it would be considerably less powerful as a claim about kidneys, pancreas, the liver, blood, and tissues. For consider: if being embodied is necessary to being a person, it is because we need a body as a filter between ourselves and the world, through which we experience the latter. Moreover, we literally see ourselves as embodied being?: as I type this sentence, I see my fingers move on the keyboard, I am aware of my eyes looking at the screen, and so on. Finally, we are aware that others' perception of us is in large part perception of the body we happen to have. It is natural, then (if misguided), that we should think of those parts of our body which enable us to experience the world, and which others can see—limbs, eyes—as instruments perhaps, but as parts of ourselves for sure. In contrast, although our internal organs and tissues enable our body to function as a filter between us and the world, they are not the means through which we are a subject of experience. Accordingly, even if it were correct to claim that body parts which are such means ought not to be conceived of as resources on those very grounds, it would not be correct to rule out from distributable resources those body parts which are not such means. Nor would it be correct to rule out from distributable resources those body parts which, for being internal, cannot be seen by us and others, and thus do not constitute that part of us which we present to the world and the loss of (part of) which could conceivably change our perception of ourselves. In short, apart from the brain, the heart, the lungs, and the liver as a whole (the loss of which would undermine our personhood), all body parts are the kind of goods of which it makes sense to say that the sick can have a right to them against the living. Of course, this is not enough to establish that they actually do have that right. However, in Chapter 4,1 argued that the considerations which support the view that the needy have welfare rights to some of the resources of the now-dead well off also support the view that the sick have a right to the organs of the now-dead able-bodied. Similarly, the considerations which support the view that the needy have welfare rights to some of the resources of the live well off also support the view that the sick have a right to some of the body parts of the live able-bodied. The argument made there in favour of the confiscation of cadaveric organs applies, mutatis mutandis, to the case of live body parts, and I shall not restate it here. Suffice it to stress, at this stage, that someone who suffers from leukaemia may very well die if she does not receive a bone-marrow transplant. Likewise, someone who badly needs a hip replacement and whose operation is

369

370

The Right to Bodily Integrity

Confiscating Live Body Parts

103

postponed because of a shortage of blood supplies will lack the mobility necessary for her to get on with her life; and a haemophiliac who needs a blood transfusion when he has to undergo even minor operations such as a tooth extraction, on pain effacing very serious medical complications, will see his autonomy impaired if he does not get the blood. And so on. That individuals all need body parts in order to lead a minimally flourishing life does not entail that those who lack them have a right to whatever body part they need. As I posited in section 1.3.2, justice requires that the needy get the all-purposes material resources required to live a minimally flourishing life: it does not require that they get whatever resources they need in order to implement their particular conception of the good. By the same token, it does not require that they get the body part they need in order to implement their particular conception of the good. Accordingly, whereas someone without kidneys might have a claim for one kidney against a healthy individual (within limits set below), a person with only one kidney does not have a claim for the second kidney he needs in order to be a world-class athlete. In order to decide how much help they can legitimately ask from the ablebodied, one must assess the magnitude of the burden the latter would have to shoulder if called upon to help. As I argued in section 1.3.2, in cases where having to help those in need would render the life of the able-bodied less than minimally flourishing, they should not be held under a duty to do so; in cases where it does not, they should be held under a duty to do so. Our task, then—and a very difficult one at that—is to identify cases where potential suppliers would not lead a less than minimally flourishing life were they called upon to help. Now, on the one hand, it is trivially obvious that for the able-bodied to lose their kidneys or corneas may very plausibly render their life less than minimally flourishing, as they would be deprived of some all-purpose means necessary to implement a conception of the good that would give some meaning to their life. In those cases, the sick do not have a right that the able-bodied transfer (some of) their body parts to them. On the other hand, it seems clear that to donate one pint of blood, to give some bone marrow, or to lose a liver lobe does not jeopardize one's prospects for a minimally flourishing life, for those body parts are regenerative.8 In fact, I submit that losing those particular body parts constitutes much less of a restriction on the projects the able-bodied want to pursue than losing, say, between 25 per cent and 40 per cent of their income through 8

I am assessing here whether the loss of a body part constitutes too much of a sacrifice and undermines our bodily integrity to an unacceptable extent. I am not assessing whether its coerced removal constitutes too much of a risk. The loss of a liver lobe does not fall foul of the objection from sacrifice, but its removal, performed as it is under general anaesthetic, might still fall foul of the objection from risk, which I assess in section 5.3.2. (There is ample evidence that, in patients who have had a liver lobe removed, the liver fully resumes its functions four to six weeks after the operation. See A. L. Caplan, 'Living Dangerously: The Morality of Using Living Persons as Suppliers of Liver Lobes for Transplantation', Cambridge Journal of Medical Ethics 1 (1992): 311-17.)

The Right to Bodily Integrity

104

Confiscating Live Body Parts

taxes. Accordingly, they can be held under a moral duty to make them available to the sick, provided that they are not called upon to give so often that they would be unable to make any plans, or that it would endanger their health. The British National Blood Service recommends that healthy adults between the ages of eighteen and sixty not donate more than three times a year, and one could take that as a benchmark. With respect to bone marrow and liver lobes, one could, similarly, follow guidelines from health authorities. The hardest question, though, is whether one can hold the able-bodied under a duty to give a kidney or a cornea to someone who lacks one. Whereas losing both kidneys or corneas would deprive the able-bodied of an all-purpose means, losing one such organ would not do so. Accordingly, the able-bodied could mount a successful challenge to being held under a duty to donate only if they could show that, by losing one such organ, they would be unable to implement their current, preferred conception of the good, and that, upon close, rational, and critical scrutiny, there is no alternative conception of the good, compatible with losing those organs, which would render their life minimally flourishing. Clearly, losing a kidney or a cornea in adulthood not only restricts the range of conceptions of the good one can frame and pursue; it may also necessitate revising one's existing conception of the good—something which, as one grows older, is increasingly difficult to do. This, incidentally, is even more true with respect to corneas, since one has, on the whole, a greater need for full vision than for two functioning kidneys. However, whether losing a kidney or a cornea would prevent the able-bodied from leading a minimally flourishing life in the way described in the last paragraph in part depends on (a) the medical complications arising from the loss of those body parts, (b) the kind of life the able-bodied are living, and (c) how easy it would be for them to find an alternative, meaningful conception of the good, were they to lose one of those organs. On the first count, available data suggest that the side-effect of a nephrectomy are minimal.9 To be sure, someone who has transferred one of his kidneys to the kidney-less would incur some risk of disability and impairment if his one remaining kidney fails. But, assuming that his condition could only be treated by a kidney transplant, he himself would be eligible for such an operation and would have a right against third parties. Still, were the probability of suffering from total kidney failure be so high as to constitute a higher risk than the risks the able-bodied standardly incur, and would therefore impose on others in their everyday life, then they ought not to be held under a duty to donate. If that were the case, however, that would not undermine my case for the claim that the sick have a right against the able-bodied that the latter give them blood and bone marrow. On the second and third counts, whereas having to give a cornea might have catastrophic consequences for a fifty-year-old professional painter or 9 See A. Garwood-Gowers, Living Donor Organ Transplantation (Aldershot: Ashgate, 1999), pp. 41-5.

371

372

The Right to Bodily Integrity

Confiscating Live Body Parts

105

photographer, it may be bearable for a piano-tuner. Similarly, whereas having to give a kidney might blight the life of a world-class athlete, it may have very little effect on the life of a sedentary academic. Moreover, it might blight the athlete's life only temporarily, but not for ever: after all, many athletes who suffer a career-ending injury retrain and do something else. I cannot fully deal with such comparisons here. I shall simply note that, in the light of the immense difficulties encountered by the kidney-less and the blind, we cannot afford not to take seriously the suggestion that the able-bodied might be able to help them by giving them the relevant organ without incurring the costs we tend to think they would. And, indeed, determining how much individuals owe to one another on the basis of their conception of the good and engaging in the kind of calculations described above is not a novel idea. Theorists of justice who hold the tenets of standard morality to be true and who argue that justice requires that everyone have prospects for a minimally flourishing life believe that no one can be held under a duty to help the needy at the cost of his freedom of occupational choice, but that one can be held under such duty at a lesser cost. Imagine a badly paid musician who could work as a highly paid lawyer but who loves his job. It would be wrong, or so these theorists believe, to tax him in proportion to the earnings he could make as a lawyer, since one would thereby force him to give up on his preferred conception of the good and to spend his working life doing a job he hates. But it would not be wrong, or so many of them would argue, to increase his tax rate to the extent that, although he could still work as a musician, he would have to do less photography—an expensive hobby he loves—than he currently does. If such considerations can be brought to bear, albeit in a rough and ready way, on the legitimacy of taking material resources from those who can afford to help the poor, they can also be brought to bear, in as rough and ready a way, on the legitimacy of taking body parts from those who can afford to help the sick. (How such calculations could be made in practice is another matter.) So far I have argued that able-bodied individuals are under a duty to transfer some of their body parts if other people need them in order to survive or to lead a minimally flourishing life. But that in itself does not tell us who should fulfil that duty in cases where there are more eligible suppliers than needy recipients. In cases involving blood and bone marrow, where the needed body part is divisible and can be supplied by several individuals, there are two ways of selecting who should fulfil the duty to transfer. One can either ask all eligible suppliers to do it, or one can select at random amongst eligible suppliers. In the former scenario eligible suppliers all bear the burden of contributing, whereas in the latter scenario eligible suppliers all have an equal chance not to bear the burden, but some suppliers will shoulder a greater burden than others. It is fair, I think, that all eligible suppliers contribute. Compare this with taxation: its advocates are not claiming that one should select at random amongst all potential taxpayers those who will

The Right to Bodily Integrity

106

Confiscating Live Body Parts

have to pay a tax; instead, they are claiming that all taxpayers should pay. Having said that, should the costs of using all eligible suppliers prove too high, one could devise a rotation system whereby each supplier would be called upon to transfer some of their blood or bone marrow once every n years. Cases where the needed body part is indivisible (for example, kidneys and liver lobes) are trickier, since the burden of having to transfer them cannot fall equally on all eligible suppliers. My argument for conferring on the sick a right to the body parts of the able-bodied implies that, in such cases, all eligible suppliers equally are under a correlative duty to transfer the relevant body part to the sick This, together with the fact that only one of them must actually fulfil their duty, in turn implies that they all have an equal claim not to have to shoulder the burden of fulfilling the duty. In such cases, it seems right to select the supplier at random, since randomness ensures that people have an equal chance of having to bear the burden of giving body parts, and that no one is selected who has a stronger claim than others not to shoulder that burden.10 Note, however, that if it is indeed the case that selling one's body parts is legitimate (as I shall argue in Chapter 6 that it is), then, just as a well-off individual could, in principle, buy himself out of having to perform a civilian service (as we saw in section 3.2), a well-off individual who is called upon to provide one of his body parts to help a patient could, in principle, buy himself out of performing that duty by paying a willing third party to donate instead. In the case of blood, this suggests that someone who is called upon to donate, like everyone else, every year, might be able to pay another donor to stand in for him. That other donor, then, would contribute more than his fair share, but would do so against payment. In the case of non-divisible body parts, the qualification I have just introduced supposes that there is more than one eligible supplier for the needed organs (let us say, for simplicity's sake, that there are two of them), that a wealthy individual has been selected at random to help the sick, and that he wishes to pay the other eligible supplier to stand in for him. To reiterate here a point made in section 3.2, if the grounds for the obligation to help is the neediness of the sick, then there is no reason to rule out the possibility that the wealthy might be able to transfer, so to speak, the performance of their duty on willing individuals. Note, though, that in both cases, as the well-off person is, in fact, trying to get out of doing what he is called upon to do, he may have to pay whatever price asked by the potential seller. (This is another way of saying that he would lack a claim to being protected from exploitation—a claim which, as we shall see in section 6.3.2, sellers and buyers in all other cases do have.) Neither case undercuts my case for the confiscation of body parts, since there might be instances where the able-bodied, and wealthy, individual who is called upon to help cannot find an alternative donor, or cannot, or is unwilling, to meet the alternative 10 The foregoing considerations apply, obviously, to cases where two dead individuals turn out to be eligible donors for one transplant patient.

373

374

The Right to Bodily Integrity

Confiscating Live Body Parts

107

donor's financial requirements. In those instances, then, he or she is under an obligation to contribute. Before I review objections against the view that the sick have a right against the able-bodied that they give them some of their body parts, two loose ends need tying. I have argued that the able-bodied are under a duty to transfer some of their body parts to the sick, but—and this is the first loose end—I have not said anything here about compensating them. Yet, as I argued in Chapter 4, in cases where the burden of donating falls on a small number of individuals, suppliers of body parts should be compensated. This is not merely because whether or not someone is endowed with tissues and organs which are in demand is a matter of bad brute luck, but also (and relevantly to our concern in this chapter) because an eligible supplier who has had to relinquish a body part whilst alive may incur higher life-insurance premiums or lose income whilst in hospital, and so on. A properly designed compensation scheme would cover such costs. The second loose end is this: I have argued that the able-bodied are under a duty to transfer (some of) their body parts to the sick; but I have not distinguished between cases where potential suppliers of body parts are materially quite well off from cases where they are not. Nor have I distinguished between cases where those who need organs are also materially needy, and cases where they are not. We may be faced, then, with a situation where the patient (P) is relatively well off but where the only eligible supplier (Su) is not. Some might think that, in that case, Su ought not to be held under a duty to provide P with a body part, on the grounds that it would be unfair to confiscate, against his wishes, some of the body parts of a poor individual, so as to help a wealthier transplant patient. For the former, after all, is worse off than the latter. Were his organs to be confiscated, not only would he be materially worse off than the transplant patient, which is unjust; he would also suffer the additional injury of not having his wishes concerning his body respected.* * I do not think that whether or not one is under a duty to make one's body parts available to the sick depends on one's share of material resources. For a start, I assume at the outset of this book that justice does not require that material equality obtain. Accordingly, the fact that Su is materially worse off than P is not unjust, provided that he has the resources he needs, and to which he is entitled, to lead a minimally flourishing life. Thus, the objection under study cannot allege the putative injustice of this inequality as a reason to exempt Su from helping P. Moreover, and more importantly, the objection seems to prove too much. Suppose that a drowning but relatively well-off person (D) can only be rescued by a swimmer (Sw), who happens to be materially worse off than D, although not 11 That objection was put to me in the context of the confiscation of cadaveric organs. I actually think that it is stronger, although, as we shall see, not decisive, when applied to the confiscation of live body parts.

The Right to Bodily Integrity

108

Confiscating Live Body Parts

needy in ways forbidden by justice. It would seem odd to allow Sw not to rescue D on the grounds that the latter is materially better off than he is. The fact that Sw knows how to swim is what matters, not Sw's material situation relative to D's. By the same token, the fact that Su has something—a body part—which P needs so as to lead a minimally flourishing life is what matters, not Su's material situation relative to P's. Finally, that someone may be sick—and undergoing medical treatment— does not disqualify him from a duty to help the materially needy by way of taxation. Suppose that P, who needs a body part but can hold down a job, earns enough to be able to give some material resources to H, who is able-bodied but homeless. Were P to say that he will henceforth stop helping H, on the grounds that it would be unfair, because of his poor health, to diminish his total holdings of resources, we would accuse him, rightly, of failing to fulfil his obligation of justice. If P is in a position to help N by way of taxation, without having so little by way of material resources that he cannot lead a minimally flourishing life, there is no reason why he should not do so. By the same token, if Su is in a position to help P, byway of a body-part transfer, without jeopardizing his health to such an extent as to jeopardize his prospects for a minimally flourishing life, there is no reason why he should not do so. I have assumed so far that Su is worse off than P but not materially needy. Let us assume that he is, though, in that he does not have the resources he needs to lead a minimally flourishing life. In so far as we are working in ideal theory, Su's situation is acceptable at the bar of justice: it may be, for example, that Su chose not to avail himself of the resources to which he had a right; or it may be that Su can be clearly shown to be responsible for his plight and therefore does not have such a right in the first instance. Can we, in that case, hold him under a duty to help P? My hunch is that there is no reason why we should not. Ex hypothesi^ P does not owe it to Su to improve his material situation; and Su has something which P desperately needs. Let us return to the drowning case. D is in serious peril; Sw can help him, but, it turns out, is a homeless person who has consistently refused perfectly acceptable, publicly funded, housing. Why should Sw be exonerated from any obligation to rescue D, simply because he happens to be very needy, and need not be? Thing? would look different if Sw were entitled, as a matter of justice, to housing which, for whatever reason, he cannot get (an all too familiar situation, even in welfare state countries such as ours). In that case, Sw might have enough of a grievance not to be held under a duty to help D. I say 'might', note, because I am not entirely sure that he does. Still, in a situation where he is responsible for his neediness, he does not have such a grievance, and correspondingly does not have a claim not to help D. By the same token, Su does not have a claim not to help P (provided that we can apply the non-responsibility condition, that is, provided that we can assess that Su is responsible for his plight without getting him to make shameful revelations about himself).

375

376

The Right to Bodily Integrity

Confiscating Live Body Parts

109

5.3 TWO OBJECTIONS AGAINST THE CONFISCATION OF LIVE BODY PARTS I have argued so far that if one thinks that the needy have a right to material resources against the well off, one is committed to the view that individuals who need body parts in order to survive or lead a minimally flourishing life have a right that the able-bodied give them those parts (except for the brain, the whole liver, both kidneys, corneas, the heart, and the lungs). Now, one could obviously object that my argument does not take sufficient account of the fact that those resources—material or bodily—are of a different nature. The following words, from the pen of one Judge John P. Flaherty, vividly capture what most people think of the mandatory taking of body parts: 'Forcible extraction of living body tissue causes revulsion in the judicial mind ... You can picture the man being strapped to the table and then the extraction.'12 The confiscation of live body parts standardly elicit two objections: (a) to confer on the sick a right to the body parts of the able-bodied violates the bodily integrity of the latter; (b) it constitutes too much of an interference in their lives, in a way that conferring on the needy a right to the material resources of the well off does not. Note that the objection from bodily integrity, which I address in section 5.3.1, differs from the objection from interference, which I address in section 5.3.2, since one can undermine someone's bodily integrity without in any way interfering with their life. If I come into your room at night knowing that you are asleep and very heavily sedated, and if I take blood from you, I am not interfering with your life, since I am not preventing you from doing anything. Yet, by taking that blood, I take something from your body and thereby might be thought to diminish its integrity. Conversely, if, as you walk down to the beach, I stand in your way but do not touch you, I am interfering with your life, but not violating your bodily integrity. However, although it is conceivable to object to the confiscation of body parts on the grounds that it undermines the suppliers' bodily integrity without making reference to their interest in not being interfered with, I shall argue at the close of section 5.3.1 that the objection from bodily integrity derives much of its force from the view that in violating people's bodily integrity, one is interfering with their life to an unacceptable extent.

5.3.1 Bodily Integrity To argue, as I do, that, under some circumstances, the sick have a right against the able-bodied that they give them body parts amounts to claiming that the latter do not have a right to full bodily integrity. Quite obviously, someone might object that they do, in fact, have such a right, which, if correct, would disprove my case. 12

McFallv.Strimp,Me&eny Court, USA, 1978.

The Right to Bodily Integrity

110

Confiscating Live Body Parts

Now, there are two ways in which one might construct that objection. As we saw in Chapter 4, one might argue that bodily integrity—to wit, having control over one's body—is important in its own right, just as leading a minimally flourishing life is, and that we have an absolute right that nothing be done to our body, or with it, without our consent (provided that we do not use it to harm others without good reasons). Against that variant of the objection, which directly entails the opposite of my claim that the able-bodied do not have a right to fiill bodily integrity, there is very little that can be said. It bears reiterating, though, that it is unclear why our interest in bodily integrity should be given importance in its own right, alongside our interest in leading a minimally flourishing life. And, indeed, someone might be tempted to argue, more convincingly, that bodily integrity serves other, fundamental values, and that it is therefore important enough to be protected by an absolute right. For example, someone might argue, very plausibly, that individuals need to have control over their body in order to lead a minimally flourishing life.13 On that view, the body is an allpurpose means necessary to implement any conception of the good, which suggests, if true, that individuals cannot lead a minimally flourishing life if its integrity is undermined. However, so to object to the compulsory taking of live body parts is also problematic, for two reasons. First, individuals clearly need not have control over the whole of their body in order to lead such a life. Second, in conferring on the ablebodied the absolute right to control what is done to their body, we would allow for a world where a number of people are left without the body parts they need in order to lead a minimally flourishing life: we would, in fact, undermine the very value from which bodily integrity gets its appeal. To promote the value of a minimally flourishing life, thus, might require undermining the bodily integrity of some individuals. Others still might be tempted to point out that in denying the able-bodied the absolute right to control what happens to their body, one fails to give them the respect they are due as persons. This objection, in turn, has three variants.14 The first variant claims that in losing her body parts, a person would stop being a person (or at any rate would not remain the same person), then asserts that it is up to each person to decide whether to remain a person (or at any rate whether to remain the person that she is), from which it concludes that the mandatory taking of body parts is morally wrong. 13 For an objection along those lines, see D. Lamb, Organ Transplants and Ethics (London: Routledge, 1990), p. 106. For a good account of the view that bodily integrity is a condition for autonomy, see Feinberg, Harm to Self, p. 54. 14 The first and third variant were put to me at an Oxford seminar in May 2000 (the first one can also be found in Fried, An Anatomy of Values* pp. 205fi), the second one by C. Mackenzie. There are similarities between the second and the third variant (namely, their insistence that the confiscation of live body parts is incompatible with the requirement that we should respect one another's personhood), but it pays to address them separately.

377

378

The Right to Bodily Integrity

Confiscating Live Body Parts

111

The second claim is correct for there can be fewer more fundamental interests of persons than their interest in remaining a person. On that basis, one can either argue that persons therefore should decide whether to remain such, or one can aver that they are not even at liberty to jeopardize their interest in remaining such. I defended the latter view in section 1.2.3. In any event, whichever of those two views one adopts, they both rule out the mandatory confiscation of body parts, provided the first claim is correct.15 Unfortunately for the proponent of the objection under study, however, it is not correct. To reiterate some of the points made earlier, persons are more than the sum total of their body, and so can distance themselves from its parts and remain persons; indeed they can remain the same person even if they lose some of its parts. To the extent that I am not advocating, in this chapter, complete body transplants, indeed to the extent that I am advocating limited losses of organs (such that the individual who would lose them would remain the same person), this variant of the bodily integrity objection fails. The second variant of the objection holds that to interfere with an individual's body in the way defended here is to inflict the same kind of psychological trauma as inflicted through torture and rape—trauma so serious that it can contribute to undermining his or her personhood. Now, it is true that torture and rape can and do have that effect. It is no less true, though, that the coercive taking of some blood, some bone marrow, a liver lobe, and a kidney ought not to do so. I shall address the supposed analogy between non-consensual sex and the confiscation of body parts in section 5.4, so let me here focus on the case of torture. Torturers cause enormous physical pain to their victims, and moreover intend to do so, either as a means to, for example, obtaining important information, or as an end in itself. And it is those two factors—the experience of the unimaginable pain and the awareness that they simply do not count as persons—which often lead to the disintegration of their victims as persons. But neither factor is usually present in the confiscation of live body parts, first, because the removal procedure is done under anaesthetic and causes suppliers little pain afterwards (if at all), and, second, because the aim of neither the sick nor the medical staff is to destroy suppliers. Having said that, some people who suffer from needle phobia would experience such terror, were they to have to undergo the removal procedure, that their personhood might be destroyed. It seems to me that this would constitute a strong enough reason to exempt them from donation, just as (as we saw in section 2.3.2) my being water-phobic would constitute a reason to exonerate me from a duty to rescue a swimmer in difficulty.16 15

Note that if it is correct that a person stops being a person if she loses her body parts, the second view also rules out giving and setting one's organs. More on the latter in Chapter 6. 16 I am grateful to M. Kramer for drawing my attention to the case of the needle-phobic, which is relevantly similar to that of the individual who does not want to give his organs posthumously because he believes that he is Jesus Christ and that Christ's body must remain intact (see section 4.3.2). Both suffer from a serious medical condition which is characterized by, respectively, irrational fears and irrational beliefs.

The Right to Bodily Integrity

112

Confiscating Live Body Parts

It is simply not true, then, that confiscating body parts from individuals is akin to torturing them; in those very few instances where the effect of the removal procedure on suppliers is similar to the trauma incurred by torture victims, my argument to the effect that there are limits to the sacrifices we can expect individuals to make for the sake of the needy would apply. This is not the end of the bodily integrity objection, though. For it has a third variant, which goes like this: to be a person is amongst other things to have the capacity for moral and rational agency, and more specifically to have the capacity for framing, revising, and pursuing a conception of the good which is not subsumed under someone else's ends but rather is one's own. It is crucial, in order to exercise the capacity for moral and rational agency, and more specifically to pursue their conception of the good, that individuals each have separate bodies, are therefore separate loci for pain and pleasure and are aware of themselves as being different persons. In the light of these facts about what being a person consists of, individuals should treat one another as separate persons, which, as vague a requirement as it is, is usually taken to mean that, following Kant, they should treat one another not merely as means but also as ends. But—the objection continues—the compulsory taking of body parts undermines that requirement. For, after all, my blood would run through your veins, my bone marrow would produce your cells, my kidney or my liver would purify your body, my eye would be your window to the world, and so on. Although I am at liberty to choose to give you those body parts, in requiring that I give them to you, you are treating my body, and therefore me, merely as a set of resources to be used for your own purposes, and not as a separate person with her own ends. In so acting, you fail to give me the recognition respect I am owed as a person. At first sight, this variant of the objection from bodily integrity has a lot of intuitive appeal. From Rawls's well-known complaint that utilitarianism does not treat persons as separate to Nozick's assertion that granting them selfownership rights is the only way so to treat them, the idea of the separateness of persons is central to liberal thought. Moreover, unlike the variant we examined a few paragraphs ago, this variant need not deny that someone whose bodily integrity would be compromised by the mandatory transfer of body parts would still be a person (and, indeed, this particular individual would retain her capacity for moral and rational agency, still have self-consciousness, and still be sentient). All it says, in effect, is that in requiring of someone that she transfer parts of her body to someone else, one fails to recognize that being a person is not all that matters: being able to live as one is crucial too. To prevent them from so doing is to fail to give them the recognition respect they are due as persons. In reply, let me concede that being able to live as a person does, of course, matter very much. By way of an extreme example, recall the case, mentioned in section 1.2.1, of a dicephalic being, that is, a being which has one body but two heads. Such a being in fact consists of two distinct persons, each with her own thought processes, desires, memories, intentions, and so on. If being a person

379

380

The Right to Bodily Integrity

Confiscating Live Body Parts

113

were all that mattered, these persons would have no claim for help. However, in so far as they share the same body, they are each entirely dependent on the other's agreement for every single act of their life. Although they are persons, they cannot live as such, and they do, therefore, have a (prima facie) claim for help. Yet this objection to the confiscation of live body parts fails, because it presses into service an erroneous interpretation of the Kantian requirement that we treat one another as separate persons with our own ends. The requirement as articulated by Kant states that we should not treat one another as means only, but also as ends. This in turn implies that we can treat one another as means provided we also treat one another as ends. The objection works, therefore, only if violating the bodily integrity of the able-bodied amounts to treating them solely as means. However, violating someone's bodily integrity does not, in and of itself, imply that one is not regarding them as having their own projects and attachments. Suppose that I slip and fall off the ice-covered pavement, and that you could do me considerable good simply by helping me to get back on my feet, which would take you about ten seconds. As we saw in Chapter 2, to claim that you are under a duty to help me amounts to denying that you have the right to control what happens to your body, since you would have to use your arms, hands, and legs to haul me off the ground. And yet you could not plausibly object that in requiring that you help me, I am treating you solely as a means to my end, and not as a person with her own projects to pursue: for, after all, you would, in fact, have more than enough time and energy to do whatever it was you wanted to do before I fell. Similarly, when assessing whether requiring that the able-bodied transfer some of their body parts to the sick infringes the Kantian requirement that people be treated as ends and not only as means, one must g?uige whether the removal and loss of their body parts would prevent them from pursuing their own projects. One must, in short, decide the extent to which so violating their bodily integrity would interfere with their life.

5.3.2 Freedom from Interference More convincingly, then, someone might be tempted to object to the claim that the sick have a right to some of the body parts of the able-bodied on the grounds that to hold the latter under the corresponding duty interferes in their lives to a much higher degree than holding the well off under a duty to give material resources to the needy. In support of her claim, she might conceivably go on to make the following three points:17 (A) If the able-bodied are liable to be called upon at any time to give some of their body parts, they always have to factor that in decisions they make to 17 For the general claim that the confiscation of body parts constitutes an unacceptable interference in our lives, see, e.g., Cohen, Self-Ownership, Freedom and Equality, pp. 243-4. Points

The Right to Bodily Integrity

114

Confiscating Live Body Parts

take a trip, go for job interviews, spend time with their children, and so on and, as a result, it is hard for them to introduce some sort of routine in their lives. (B) If their body parts are not theirs to control but can be used by someone else, and if they are under a duty to make them available to the needy, the ablebodied are under a duty, by implication, to maintain them well, and not to engage in practices which might damage them or render them unusable, and which might thereby render them ineligible as suppliers (such as unsafe sex, smoking, dangerous sports, etc.). (C) Moreover, simply to risk incurring the serious, sometimes life-threatening consequences of a surgical operation would also prevent the able-bodied from making mid- and long-term plans. In short, being held under a duty to transfer body parts to the sick would place unacceptable constraints on our autonomy. None of those three kinds of cost—unpredictability, constraints on our occupational choices, risk of disability and death—are incurred by the well off when they are called upon to help the needy by way of material resources. Accordingly, holding them under a duty to do so does not commit one to holding the able-bodied under a duty to transfer their body parts to the sick Neither of those three points denies what I sought to show in section 5.2, namely, that the loss of some body parts need not render our life less than minimally autonomous and thereby less than minimally flourishing. Rather, to advert to the distinction between the burdens attendant on the transfer of a resource and the burdens attendant on the loss itself of that resource which we encountered in section 2.3.1, each of those three points focuses on a particular feature of the moral duty to transfer a body part to the sick. To reiterate, however, imposing an absolute prohibition on the confiscation of body parts on the grounds that the suppliers' interest in leading a minimally flourishing life would thereby be harmed does undermine the value of promoting that interest in general, since it would leave a number of people without the body parts they need in order to lead a minimally flourishing life. Our task, then, is to assess the conditions under which, if any, the able-bodied can legitimately withhold their body parts from the sick and thereby deny them prospects for a minimally flourishing life. So let us address each strand of the objection under study. (A)-(C) were put to me at seminars in London and Bristol in October 2000. The opponent of the confiscation of live body parts might also make another point, namely, that to have to give, say, blood, or one of her liver lobes, violates some of her most deeply held religious beliefs; such an interference with her religious life, she might then argue, would be unacceptable to her. To reiterate, my argument in section 4.3.2. about conscientious objections to the confiscation of cadaveric organs applies here, and I need not restate it.

381

382

The Right to Bodily Integrity

Confiscating Live Body Parts

115

(A): The first strand holds that being under a duty to transfer a body part, unlike being under a duty to transfer some material resources, is unacceptably disruptive, since suppliers cannot know when they will be called upon to contribute. However, although not knowing whether one will have to transfer body parts does, to some extent, disrupt our lives, it does not seem difficult, as a matter of policy, to minimize such disruption. Concerning blood, if suppliers know that they are due to give blood once a year, at a given date, they can plan around that. Concerning body parts, patients waiting for a transplant do not need to undergo the operation at a few days' notice. One could therefore warn eligible suppliers several weeks in advance that they will have to spend some time at the hospital, and give them, for instance, a two-week bracket within which they could choose when to have the operation. One could also make it statutorily mandatory on employers to accommodate their employees' requests for leave of absence if called upon to donate. To be sure, someone who is called upon to donate may have to postpone some of the plans he will have made (just as he will have to do so, incidentally, if he is called upon to serve on a jury). But, given that patients themselves have to give up on major life plans, and not simply postpone them, it does not seem too much of a price to pay. (B): Consider now the claim that, under my proposal, the able-bodied are under a duty to remain healthy, which, or so some would argue, constitutes too much of an interference in their lives. This claim assumes that individuals, on my view, hold their body parts in trust for the benefit of the sick. Strictly speaking, however, to claim that the able-bodied are under a moral duty to help the sick does not imply that they are under a duty to remain able-bodied in case some people, in the future, fall sick and need their organs. As we saw in Chapter 3> to claim that the well off are under a duty to give a share of their wealth to the poor does not imply that they have to work to the best of their productive abilities in case more people come to need their resources in the future, or in case those who are already poor come to need more resources than they are currendy given. It only means that, on the assumption that the well off already own x, they must give the existing poor a share of #; it also means that they should not defraud the poor and pretend that they do not own x. Analogously, all I am claiming here is this: in cases where the needed body part is one which one ought to supply only once, the able-bodied, once selected for a donation and only then* must ensure that they will remain eligible on the day the transplant is to take pkce. Moreover, they should not try to defraud the sick by pretending that they are not healthy enough to go through the removal procedure. In the case of blood collection, where the ablebodied are called upon to donate at regular intervals, they are not under a duty to make sure that they are eligible to donate, but they are under a duty not to try and commit a fraud. I believe that for the able-bodied to be under such a duty does

The Right to Bodily Integrity

116

Confiscating Live Body Parts

not constitute such an interference in their life as to make it less than minimally flourishing.18 (C)i Let us assume, then, that the foregoing points are correct, and let us suppose that someone is selected for a donation. If the donation necessitates an operation under general anaesthetic, she incurs a risk of suffering serious complications during and after the procedure; in fact she risks death. Surely, some would object, she cannot be under a duty to incur such risks for the sake of a transplant patient? Clearly, in that respect, the duty to provide material help is relevantly disanalogous to the duty to provide body parts—disanalogous in such a way, that is, as to undermine support for the latter. We encountered that point in section 2.3.1. There we saw that the claim that the able-bodied cannot be held under a duty to die for someone else's sake does not entail that they cannot be held under a duty to run the risk—however small—of dying for their sake. Generally, you recall, individuals can be held under a duty to incur a reasonable risk for the sake of helping someone in peril, whereby a reasonable risk is one possibly as great as, but no greater than, the risks they standardly incur, and impose on others, in their everyday life, such as when driving or cycling. And so, if it is indeed the case, as I showed in that section, that the able-bodied are under a moral duty to help out of the water someone who is drowning, or to drive to the hospital, ambulance services failing, someone who is in serious pain, and if the risk of dying during or after the operation is as acceptably low as the risks one incurs whilst driving or rescuing a drowning person from quiet seas, one must accept a moral duty to transfer body parts under general anaesthetic. As it happens, the risk of dying incurred by individuals on the operating table is considerably higher than the similar risk they incur when taking an average car trip.19 Be that as it may, my point here is that if rescuers are under a duty to incur a risk, when the probability of actually incurring the harm is sufficiently low, then we must hold the medically well off under a duty to incur a similar risk of a similarly low harm. 18

By the same token, to be under a duty to make one's organs available posthumously does not imply that one should live in such a way that one's organs will be good enough for transplant purposes once one is dead. " According to UK statistics, the risk of dying from an operation under general anaesthetic is about 1 in 1,000 year on year. By contrast, in the period 1999-2001, the risk of dying from a average car trip was roughly 1.3 in 1,000,000. The latter figure was calculated as follows: in that period, roughly 3,400 people died hi a car accident. At the same time, a UK resident took, on average, 639 car trips a year, for an average total of 8,800 kms (which gives an average car-trip length of 14 kms). In that same period, the population of the UK was 57 million inhabitants, so we can put the number of person-trips at 57mulion x 639 = 36,423,000,000. Correspondingly, the risk of dying in an average car trip was 3,400/36,423,000,000 = 1/10,712,647. The risk of suffering a serious injury in a car accident was 1/78,329 (on the basis of 465,000 persons a year suffering from such an injury). Sources: and . I am grateful to Francois Fabre for his help with calculating those probabilities.

383

384

The Right to Bodily Integrity

Confiscating Live Body Parts

111

At this juncture, the opponent of the confiscation of live body parts might be tempted to counterclaim that people in need do not have a right against us that we help them when the help they need is our time, our energy, indeed the use of our body, as described in the previous paragraph, if there is the slightest risk that we may be harmed as a result. But her counterclaim would be vulnerable to the objection that, every time we drive or every time we cycle, we put, or contribute to putting, other people at risk to suit our purpose—people, in fact, who do not have much choice in the matter (after all, they have to go shopping, to take their children to school, and so on, and thereby expose themselves to risks). More to the point, we accept being put at risk by ambulance and fire-engine drivers, for the sake of ensuring that people whose prospects for a minimally flourishing life are at stake get to the hospital in time, or are helped out of their burning house in time. It is unclear, then, why people in need of body parts are not allowed to put others at risk by asking them to undergo an operation, all the more so as suppliers, to reiterate, would receive compensation. At this stage, of course, someone might object that individuals accept incurring that risk because they in turn might need to be taken to the hospital very quickly. But this will not do: for, by the same token, they should accept the risk attendant on general anaesthetics, knowing that they might one day need a transplant. My opponent's counterclaim, therefore, seems to prove too much. To be sure, there is a difference between being put at risk by an ambulance driver for the sake of someone who needs to get to the hospital and being put at risk by a surgeon for the sake of a patient in need of an organ. In the ambulance case, die patient's end is not served by putting pedestrians at risk. In the transplant case, by contrast, putting the donor at risk is instrumental to the patient's end: the patient would not be able to stay alive, or to lead a minimally flourishing life, if the donor did not incur the risk. But unless one thinks that individuals should never be put at risk as a means to someone else's ends, one cannot point to that difference in order to block the compulsory taking of body parts. On what grounds, then, could one argue that individuals should never be put at risk as a means to someone else's ends? I suspect that many a proponent of that view would claim that by putting someone at risk as a means to achieve one's own or someone else's ends, one is requiring that they make a considerable sacrifice, without asking their consent, and one fails, thereby, to treat them as persons with their own projects, attachments, ends to pursue, and so on. Suppose that you are suffering from a very serious bout of influenza, and that you can get some relief only if I take a fifteen-minutes cycle ride, both ways, on a busy road, to the nearest pharmacy. I would undoubtedly incur a small, but real, risk of being run over by a car. If the claim under study is correct, it follows that to hold me under a duty to go to the pharmacy constitutes a failure to treat me as a person with my own ends to pursue, and therefore that I should not be held under that duty. I for one cannot think of many people who would hold that view: as we saw in section 2.3.1, it is

The Right to Bodily Integrity

118

Confiscating Live Body Parts

hard to see how merely putting me at a small risk involves denying that I am such a person. Let us nevertheless assume, for the sake of argument, that it does. Even then, the objection from risk could not be deployed against the claim that the ablebodied are under a duty to transfer body parts under local anaesthetics, since they would not incur any risk in doing so: more specifically, given the state of medical advances, this implies that they are under a duty to transfer their blood, bone marrow, and liver cells (once it becomes possible to extract them under local anaesthetic).20

5.4 JUSTICE, SEX, AND REPRODUCTION The claim that those who need personal services and body parts have a right that those who are in a position to provide them do so might be thought by some to have the following unpalatable implications: if the imperilled and the needy have the right that those in a position to help provide them with personal services and body parts, on the ground that they would not, otherwise, lead a minimally flourishing life, does it not follow, then, that those who need sexual and reproductive services get them as a matter of right, in other words, that there ought to be a sexual and reproductive lottery?21 Fortunately, I do not think that my case for a right to personal services and body parts has those implications. I say 'fortunately', for, if it did, then it would for many count as a reason—and a plausible one at that—to reject the view that those in need of personal services and body parts have a right to get them, even under the strict conditions spelled out so far. Let us turn, first, to the view that I am committed to endorsing duties of, as it were, sexual Good Samaritanism. An argument to that effect might plausibly go like this: regular sexual intercourse is one of the things (most) human being? need in order to flourish. As it happens, many people suffer from severe sexual deprivation, as they cannot get sex by meeting potential partners in the usual ways (e.g. they are severely disabled, very ill, too old to attract sexual partners, or are male resident aliens who have not mastered the language of their country of refuge and whose fellow nationals are overwhelmingly male, etc.). In most of those cases, they (or, at least, the men amongst them) can resort to prostitution. Now, I have argued so far that would-be rescuers are under a duty to provide personal services to the imperilled on the grounds that the imperilled need those services in order to lead a minimally flourishing life; I have also argued that the 20 It is already possible to transplant liver cells on to patients under local anaesthetics: it is hoped that this technique, which is still on trial, can be used to relieve the plight of diabetes sufferers. See J. Meikle, Tests Hold out the Hope of Cure for Diabetics', Guardian, 27 January 2001. 21 I am grateful to N. Humphrey, A. Leveringhaus, D. McDermott, and C. Mackenzie for pressing me rather hard on this question.

385

386

The Right to Bodily Integrity

Confiscating Live Body Parts

119

able-bodied are under a duty, in some cases at least, to provide body parts to those who need them. Duties to help, then, do not stop at material resources: they involve the body. In addition, they do not stop at the surface, as it were, of the body: they involve the body in invasive ways. If all those points are true, then, by the same token, it seems that individuals are under a duty to make themselves available to the sexually deprived—and, conversely, that the latter have a right to sexual services against the former. However, there are a number of reasons as to why my argument in favour of duties of Good Samaritanism and the confiscation of body parts is compatible with the claim—which the overwhelming majority of people would endorse—that the sexually deprived lack that right. In section 2.3.1, you recall, I argued that the provision of a good G can be protected by a right if G is such that to be under a duty to transfer it to someone else does not change its nature. Sex, undeniably, is a good which has great value for most people, whether they partake of it or not. No less undeniably, it is also a good whose value resides in the fact that it is given, and exchanged, freely (although not necessarily, as we shall see in Chapter 7, for free). I do not mean by this that no one, as a matter of fact, can enjoy sex as sex unless it is given freely: some rapists are indifferent to the fact that their victim does not consent to sex; others, in fact, derive pleasure precisely from the fact that their victim does not consent. All I mean is that most people value sex precisely to the extent that it is given freely. And that, in fact, is also true of many rapists, who rape because they lack the opportunity to have sex with willing partners, and of many individuals who visit prostitutes and then spend a good deal of time, during the prostitutional encounter, pretending that the prostitute is having sex with them out of desire rather than for financial gain.22 That most people value sex in that way suggests that, if sexual services were provided as a matter of right, the act of transfer would change the nature of sex, and the sexually deprived, or at any rate most of them, would not get what they most value about it. From the point of view of those individuals, then, justice could not coherendy require the provision of sexual services. As I conceded in the last paragraph, however, some people might be indifferent to the fact that their partner does not consent to sex; in fact, might positively welcome the fact that he or she does not consent. From their point of view, it would be entirely coherent for justice to require such provision. The good of sex, then, lies somewhere between love, which logically cannot be transferred as a matter of justice, and personal resources such as a kidney, blood, or the use of my arm, which, like material resources, can always be so transferred without change to their nature. Be that as it may, although justice can coherendy, from the point of view of those indifferent to, or welcoming of, partners' lack of consent to sex, mandate 22 For an interesting account of the psychology of rapists which supports my claim in this sentence, see A. Wertheimer, Consent to Sexual Relations (Cambridge: Cambridge University Press, 2003), ch. 4.

The Right to Bodily Integrity

120

Confiscating Live Body Parts

the provision of sexual services, it ought not to do so. In fact, my case in favour of Good Samaritanism and the confiscation of body parts implies that there is no such thing as a right to sexual services. As I have argued throughout this book, those in a position to help others are not under a duty to do so if they would lose their own prospects for a flourishing life by so helping. Now, as is well known, non-consensual sex is extremely harmful to the victim. Not only is the act itself harmful, both physically (even when the perpetrator does not need to physically overcome his victim, he will, if intent on penetrating her, hurt her) and psychologically, its consequences are harmful, most particularly psychologically: the overwhelming majority of rape victims report long-lasting loss of normal (not merely sexual) functioning in everyday life.23 Moreover, sex itself is dangerous, carrying as it does risks of disease and, for women, unwanted pregnancy and its attendant physical risks (to name a few, infertility if they miscarry, lasting problems resulting from abortion, severe back and urinary problems, death in childbirth, etc.). As I argued in Chapter 2, and earlier in this chapter, potential rescuers and healthy individuals are not under an obligation of justice to provide personal services and body parts at such costs to themselves. By the same token, individuals ought not to be held under an obligation of justice to provide sexual services to the sexually deprived. There is another, crucial, consideration against the right to sexual services, which does not apply to other rights to personal resources. The act of rescuing someone from choppy seas, or of hauling him on the pavement after he has fallen off his bike, does indeed consist in making our body available to the imperilled; the act of providing blood does indeed consist in making it, or one of its constituents, available to the sick in an invasive way. But they usually do not require that we subject ourselves to having an intimate interaction with those who need us. In contrast, sexual intercourse, by definition, does consist in making one's body itself available to someone else and in interacting, in the most intimate way possible (physically, if not emotionally), with that person. Invasiveness is problematic, then, to the extent that it is accompanied by forced intimacy. To be sure, there are kinds of sexual acts, such as manual sex, which individuals can perform on their partners with minimal physical intimacy; there are also kinds of sexual act, such as phone sex, which they can perform without making their body available to their partners. Contrastingly, there is also one kind of rescue act which is physically intimate, to wit, mouth-to-mouth resuscitation.24 Those concessions, however, do not undermine my claim that being under a duty to provide rescue services and body parts does not imply that we are also under duties of sexual Good Samaritanism. For, when performing physically intimate rescue acts on the imperilled, Good Samaritans do not subject themselves to 23 24

See Wertheimer, Consent to Sexual Relations, p. 104, for a list of studies of rape victims. I am grateful to S. Uniacke for bringing that point to my attention.

387

388

The Right to Bodily Integrity

Confiscating Live Body Pans

121

their partner's intimate thoughts, desires, fantasies, and so on. However, when performing non-physical sexual acts, individuals do so subject themselves. To require of them that they engage in such intimate relationships without their consent would constitute too much of a violation. It would also place them in a position where they would have to have sex with someone who would not desire them for the person that they are, but who would merely want to have sex with someone—anyone—with desirable (to them) physical characteristics. The problem, of course, is that sex, for most people, is a rather complicated affair; it does not merely consist in the mutual use of bodies, but is tightly bound up with our sense of ourselves, our self-esteem, and our perception of others. Although sex is not the main determinant of our identity as sexed beings, it is a central component of it, whether or not we decide to have it, and however we decide to have it. And so it is entirely reasonable for anyone to decide that they will only have sex with individuals who do desire them, and who do not treat them merely as sexual partners but as whole individuals with aspirations, desires, and ends. In fact, it is entirely reasonable for them to decide, on any given sexual encounter, that they want to be so treated, even if they have consented to purely instrumental sex on many past occasions.25 To require of them that they let themselves be treated, without their consent, only, or primarily, as a means to someone else's sexual satisfaction, would deny them an opportunity for self-respect. To the foregoing, someone might be tempted to press the following objection: 'Look, I don't particularly want to be made to have sex with someone I don't desire—in fact I don't particularly want to be made to have sex, period. But I would certainly rather do that than be made to give one of my kidneys. That surely goes to show that I attach more value to my bodily integrity in general than to my sexual integrity in particular/ Indeed it does. As we saw in section 5.3, though, we are not under a duty to give a kidney (or a cornea) to someone else, in so far as the removal procedure does carry a risk of dying (through general anaesthetic), and as the loss of the organ itself might blight our life. I suspect that it is precisely for those reasons that some of us might prefer going through nonconsensual sex to having to part with one of their kidneys. I also suspect that, by the same token, they would well prefer parting with some of their blood rather than going through non-consensual sex. I might be wrong, of course: there might be some people for whom nonconsensual sex is always preferable to the imposed loss of a body part, however minimal the costs of the latter. Be that as it may, that fact alone does not support the view that those individuals, who can be held under a duty to give blood, can 25

Accordingly, raping a prostitute is as morally wrong as raping someone who is in a committed and loving sexual relationship. Note, by the way, that my points against a duty to provide sex apply not merely to sex between strangers, but also to sex within an established relationship. For an argument to the contrary, see Wertheimer, Consent to Sexual Relations* ch. 11.

The Right to Bodily Integrity

122

Confiscating Live Body Parts

also be held under a duty to give that against which they have far fewer objections, namely, sexual services. For, in order to decide who might be held under that duty, in the light of their views concerning the relative importance of sex versus other thing?, one would have to get all potential 'providers' to make intimate revelations about themselves, and potentially shameful ones at that: we could not, after all, take at face value someone's claim to the effect that she does mind very much being made to have sex, much more so than to give blood. One would have to inquire into her reasons for so thinking, and that might compel her to bring into the open facts about her past relationship history, sexuality, and so on. In so doing, one would, in fact, demean her, and, as I argued in section 1.3.1, one would thereby deny her an opportunity for self-respect. For that reason too, one ought not to hold individuals under a duty to provide sexual services to the sexually deprived. So much, then, for sexual Good Samaritanism. What about reproductive goods and services? The former—gametes—are needed by those whose eggs or sperm are lacking. The latter are needed either by women whose uterus cannot bear a child to term, or by men who do not have a female partner who can do so (for example, single heterosexual males and gay males). If for some reason they cannot, or are unwilling to, adopt, the only way for them to have a child is to have recourse to a surrogate mother. Does my argument in favour of duties of Good Samaritanism commit me to set up a surrogacy lottery, as it were, whereby women of childbearing age would be called upon to bear children for infertile women and gay and single men? Clearly not. For a start, and to reiterate, under the conception of justice I take as my starting point, individuals are under an obligation to provide the sick with all-purpose personal resources (within limits), but are not under an obligation to provide others with the resources to further their specific conception of the good; accordingly, they are not under an obligation to help them become parents.26 In addition, as we saw above, both the costs and risks attendant on pregnancy are quite high—higher and more numerous than the risks we impose on one another in our everyday life27—indeed too high for them to be held under a moral duty to help the fertile. Moreover, to hold a woman under a duty to become a surrogate mother would impose on her an enormous, emotionally destructive cost, which neither Good Samaritans nor organ providers have to face, namely, that of having to relinquish, perhaps against her wishes, the child she is carrying. If any sacrifice short of giving one's life away is deemed too high, that one surely is. And to 26

This implies, incidentally, that justice as I define it in this book allows, but does not require, that the infertile receive free medical treatment for their condition. 27 The risk of dying in pregnancy or childbirth is 1 in 200,000, compared with the 1/10,712,647 of dying in the course of an average drive. I do not know what is the risk of dying in the course of a twelve-hour drive (twelve hours being the average length of labour). Even if the former is equal to, or lower than, the latter, it still is not enough to establish that we can hold women to bear children for the sake of the infertile, for reasons adduced in the text above.

389

390

The Right to Bodily Integrity

Confiscating Live Body Parts

123

claim, by way of reply, that a surrogate mother ought not to be made to do so, and thus that she is only under a duty to give prospective parents a chance of parenthood (so that she can change her mind and decide not to relinquish the child) will not do; for, even though she would avoid paying the aforementioned cost, she might nevertheless find herself in the position of having to pay the lesser, but nevertheless extremely high, cost of unplanned parenthood. Some of the foregoing points, note, apply against the view that my argument in favour of the confiscation of body parts supports the confiscation of gametes. Just as women are not under an obligation to provide their womb so as to ensure that the infertile can implement their conception of the good—to wit, parenthood—neither men nor women ought to be made to provide their gametes to that effect. Moreover, to the extent that there are good reasons to allow children born from gamete donations to know their genetic parents, to hold the fertile under an obligation to donate would impose on them the cost of unwanted parenthood. Finally, even if their identity is protected, one would impose on them the emotional cost, which for some of them might be unreasonably high, of knowing that a child of theirs exists, out there, with whom they have nothing to do, but for whose welfare they might feel desperately concerned. It would be entirely reasonable for those individuals to claim that, having thought about the issue critically and with a high degree of scrutiny, the knowledge that they are a parent, albeit only biologically, would blight their life. Accordingly, they should not be made to donate their gametes. To conclude, then, on the one hand one can hold the view that the imperilled and the sick have a right, at the bar of justice, to personal services in the form of emergency rescue and body parts, and on the other hand deny that the sexually deprived and the infertile have a right, at the bar of justice, to sexual services, reproductive services, and gametes. Thus, my case for the former right does not fall foul of the view that it has those unacceptable implications.

5.5 CONCLUSION In this chapter, I argued the following: if one holds that the badly off have a right that the comparatively well off give them the material resources they need in order to lead a minimally flourishing life, then one must hold the view that the sick have a right against the able-bodied that the latter give them some of their body parts. To put the point differently, the able-bodied have a qualified right to personal integrity: a right to personal integrity, in so far they are not under a duty to make all parts of their body available, but a qualified one, in so far as they are under a duty to make some of those parts available. By that token, the sick have a qualified right to the person of the able-bodied: a right to the latter, in so far as the able-bodied are under a duty to make some of their body parts available, but a qualified one, in so far as the able-bodied retain the right

The Right to Bodily Integrity

124

Confiscating Live Body Parts

to decide what to do with those body parts which they are not under a duty to transfer. More precisely, then, the sick have a right to the blood and bone marrow of the able-bodied, as well as to those body parts the removal of which, under general anaesthetic, would not cause the able-bodied to die, and would pose a minimal risk. To many, drawing a distinction between body parts which can, and body parts which cannot, be taken from the living might simply be impossible. Yet, although in many cases such judgements will be hard to make, in other cases, or so I have sought to show, they are not. Moreover, it is no more difficult to decide when we can take body parts from the living than to decide how much money we can take away from taxpayers. Those who do not regard this difficulty as a good enough reason to reject the claim that the needy have a right to some of the material resources of the well off should not regard it as a good enough reason to reject the claim that the sick have a right to some of the body parts of the able-bodied. To be sure, someone faced with the argument deployed in this chapter might decide, against liberals committed to coercive taxation for distributive purposes, not to endorse the coercive transfer of material resources to the needy, on the grounds that its implications for personal integrity—to wit, the loss of individual autonomy—are unacceptable. But in so doing, she would concede one of my central claims—which the overwhelming majority of liberals have resisted—namely, that, at the bar of justice, material resources and body parts are relevantly analogous. In addition, she would fail to take on board the following, crucial, point: if one thinks that the badly off do not have a right to help against the well off if the latter would end up leading a less than minimally flourishing life as a result, one is committed to the view that the sick do not have a right to the body parts of the able-bodied if the latter would end up leading a less than minimally flourishing life as a result. In so far as, under my proposal, the ablebodied, leading a minimally flourishing life as they would, would retain some degree of individual autonomy, my opponent would fail to realize that holding the able-bodied under a duty to transfer some of their body parts to the sick does not undermine their autonomy. That the confiscation of body parts is subject to the aforementioned restrictions is one of two reasons why it does not undermine the autonomy of the able-bodied. The fact that the confiscation of body parts is compatible with their commercialization is the second reason. As I averred in the Introduction, the view that the able-bodied are under a duty of justice to provide the imperilled and the needy with personal resources is compatible, under certain conditions, with the view—called for by the autonomy principle—that they also have the right to sell body parts, as well as hire their body out for sexual and reproductive services. Moreover, the confiscation of body parts is also compatible with the view that, under certain conditions, those who need body parts and personal services but cannot get them for free have the right to buy them. Thus, someone who on

391

392

The Right to Bodily Integrity

Confiscating Live Body Parts

125

one occasion has had to perform an emergency rescue can on some other occasion avail himself of the body part or service he might need or want, but which justice does not guarantee him. To confer on that person the right to enter such transactions is one way to protect his interest in autonomy, notwithstanding the fact that he once had to discharge his obligation to help the needy. To the issue of commercialization, then, I now turn.

[15] Hand Transplants and Bodily Integrity JENNY SLATMAN AND GUY WIDDERSHOVEN

Abstract In this article, we present an analysis of bodily integrity in hand transplants from a phenomenological narrative perspective, while drawing on two contrasting case stories. We consider bodily integrity as the subjective bodily experience of wholeness which, instead of referring to actual bodily intactness, involves a positive identification with one's physical body. Bodily mutilations, such as the loss of a hand, may severely affect one's bodily integrity. A possible restoration of one's experience of wholeness requires a process of re-identification. Medical interventions, such as a hand transplant, may improve the possibility of a successful re-identification. However, since the experience of wholeness does not refer simply to physical intactness or impairment, the choice for medical intervention should not be based merely upon the degree of physical mutilation. It should also be based upon the degree to which a person fails in re-identifying with his or her mutilated body. We argue that a normalizing operation is only ethically justifiable if the intervention enables the person to be the body he or she has. Keywords bodily integrity, hand transplant, identity, narrativity, phenomenology

In 1998, Clint Hallam was the first person on earth to receive a successful single hand transplant. A short time after this high-tech operation, Hallam was able to brush his teeth and lift a glass with his new hand. However, despite the fact that the hand functioned well, he did not like it and asked for an amputation which was performed in 2001. Ten years after the news-breaking allograft operation, Hallam tells his story in which he reveals his negative experiences with this operation. The only good thing the surgery gave him, he says, was Martine, a nurse

394

The Right to Bodily Integrity

70

Body & Society Vol. 16 No. 3

who helped him recover and with whom he fell in love, and for whom he left his wife and family:'Apart from her, I gained nothing, I had a good lifestyle, a good family, and I lost it all overnight because of wanting a hand/1 Contrary to Hallam's negative experience with his hand transplant, Denis Chatelier tells a very positive story in his book/e vis avec les mains dyun autre [I Live with Someone Else's Hands] (2008). Chatelier received two donor hands in 2000 and has remained very happy with them. He concludes his story by underlining this: This transplant has changed my life. Now, I am no longer a nobody (rieri) ... I regained some dignity' (2008:127). Whereas the one man underlines that, eventually, he prefers being onehanded instead of living with a strange hand, the other experiences the transplant as a restitutio ad integrum - a restoration of his intactness. Drawing on these two contrasting cases, we would like to investigate in this article how to approach bodily integrity - bodily intactness, wholeness and inviolability - in people who have lost a body part. Although the body's inviolability is generally considered as a universal human right, its actual meaning cannot simply be derived from certain universal descriptions, prescriptions and laws. One's experiences, narratives and conceptions of bodily well-being, as well as one's illness and misfortune, are deeply rooted in a person's specific culture (Helman, 2007). Moreover, the very idea of the body as an independent entity can itself be considered as a product of Western 'civilized' culture (Csordas, 1994: 7). In this article we will limit ourselves to an analysis of bodily integrity in contemporary Western, high-tech medical culture, exploring the stories of a Frenchman and a New Zealander. Hence, we will not make any claim that goes beyond this specific culture and health care practice. Yet, we will show that, even in a Western context, different experiences of bodily integrity can be found and can be relevant for a normative analysis of transplants of body parts. In contemporary bioethics, bodily integrity is habitually discussed in relation to issues like organ donation (Zwart and Hoffer, 1998) or circumcision (Dekkers et al, 2005). In these discussions, the emphasis is placed on the question of whether it is morally desirable to intrude, be it medically, cosmetically or ritually, upon an (intact) body. In our analysis of the two hand transplant cases, we would like to present another normative aspect of bodily integrity. Instead of questioning interventions in intact bodies, we would like to question interventions in bodies that are no longer intact. We would like to bring forward the following issue: how to deal with people who have lost a body part so that their bodily integrity is respected. The Latin term integrare stems from the noun integrum which means 'wholeness', 'intactness'. But it is also related to the verb tangere (to touch) and

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity

395

71

the privative m, thus meaning 'not touching', 'not hurting' (see Rendtorff and Kemp, 2000: 38). Accordingly, bodily integrity implies a respect for a certain wholeness. How to respect someone's integrity, how to approach someone in an appropriate way depends on the definition of this wholeness. In various religions this wholeness is described with metaphors such as 'temple' or 'sacrament' (Ashley, 1985; Campbell, 1998). Moral descriptions often draw on the Kantian view that bodily wholeness corresponds to organic wholeness: an intrusion in the body is only appropriate if this serves the organic purpose of selfpreservation (Powers, 1999). Instead of seeking proper religious or moral definitions, we will explore this bodily wholeness as it is subjectively experienced. Our non-moralistic and non-religious consideration of a body's integmm will nevertheless have normative consequences. Indeed, one of the aims of this article is to provide a normative reflection on bodily wholeness on the basis of an analysis of how a person experiences his or her own body. A Phenomenological Narrative Approach Taking our lead from, and focusing on, a person's bodily experience of integrity or wholeness, our approach can be considered as phenomenological. In contemporary studies on embodiment and bodily experience, the term 'phenomenology' has both a theoretical and a methodological meaning. From a theoretical perspective, it refers to that specific area of philosophy in which certain ideas and concepts to thematize bodily experience have been developed (Husserl, 1989 [1952]; Merleau-Ponty, 1962 [1945]); and to the work of contemporary theorists who have further developed these ideas within the field of, for instance, feminist philosophy (Diprose, 1994; Weiss, 1999; Young, 1990), philosophy of medicine (Leder, 1990; Svenaeus, 2001; Toombs, 1992, 2001) or anthropology (Csordas, 1994; Lock, 1993). In this article, we will use the theoretical phenomenological framework to provide a better understanding of bodily integrity. One of the basic convictions in phenomenology is that the experience of one's own body cannot be reduced to the Cartesian idea of the body as a machine or mere object. One's 'own body' (corps propre) or 'lived body' (corps ve'cu) is not an object but a subject (Merleau-Ponty, 1962 [1945]). This idea is central in critical analyses of contemporary medicine in which the idea of the Cartesian res extensa still prevails. Phenomenological studies on bodily integrity in, for instance, organ donation emphasize the specific status of the body as a subject (Leder, 1999; Toombs, 1999). Although we adhere to this basic idea of the 'lived body', we believe that the emphasis on the body as subject falls short of actually understanding the process

396

The Right to Bodily Integrity

72

Body & Society Vol. 16 No. 3

of (re-)identification which underlies the phenomenon of bodily integrity. Our analysis thus seeks to add something new to the development of theory in phenomenology. Instead of just rehearsing the idea that, from a phenomenological point of view, emphasis should be put upon the body as it is lived - and especially so in health care practices (Toombs, 1992) - we would like to stress and further develop the idea that the experience of one's body as lived' affirms and presupposes the experience of one's body as a thing or machine. Indeed, we believe that the experience of one's own body is not a simple experience but rather involves a doublesided experience: in experiencing my own body as my own I can experience it both as an object (I have) and as a subject (I am). To explain the relation between having and being one's body, not as an oppositional relationship but rather as an interdependent relation, we will reinterpret Husserl's (1989 [1952]) classical distinction (but not separation) between Korper (the body experienced as object) and Leib (the body experienced as subject), and make it operational for our analysis of bodily integrity. Against the background of this developed theoretical framework, we will interpret the meaning of bodily integrity in the two case stories. From a methodological point of view, phenomenology refers to one of the various methods which can be applied in qualitative research in social and human sciences (Creswell, 2007; Denzin and Lincoln, 2000). Exploring participants' experience of a certain phenomenon, the phenomenological method mainly consists of data collection through open interviews and data analysis by means of 'bracketing' and developing clusters of meaning from significant statements (Moustakes, 1994; Van Manen, 1990). Since we were not in a position to collect information from face-to-face interviews, this article is not the result of an actual empirical data collection project, and as such our empirical analysis of embodied self-experience is limited. Although a face-to-face interview is perhaps the most appropriate way to gather information, the way one experiences one's body can also be articulated on the basis of written accounts and other data. Taking the hermeneutical idea that experiences express themselves in stories (Ricoeur, 1991; Widdershoven, 1993), we believe that the interpretation of lived experience necessarily involves an interpretation of stories. The narrative stance naturally complements the phenomenological one, and should therefore not be considered as a form of semiotics, which is indeed often considered as phenomenology's opposite (Csordas, 1994: 11). A narrative is not just the representation of experience; it both expresses and shapes experience (Frank, 1995). To unravel the way the two hand transplant recipients experienced their own body and its new appendages, we have focused on their stories as revealed in written sources (Chatelier's biography and interviews with Hallam as

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity

397

73

presented in various newspapers). Although we were not in a position to practise a 'somatic mode of attention' (Csordas, 1993) - i.e. to actually attend, with one's body, to the embodied presence of others - our reading nevertheless makes explicit the way in which the transplant recipients experience and value their body somatically, emotionally and socially. Hand Transplants Fourteen years after he lost his right hand in a circular saw accident, Clint Hallam was, in 1998, the first person to successfully receive a hand allograft. Two years later, Denis Chatelier received two 'new' hands. Both surgeries were performed by Dr Jean-Michel Dubernard and his team in Lyon, France. Dr Dubernard has become famous for his pioneering work in developing techniques to transplant all kinds of human tissues and organs. He also performed the first face transplant on Isabelle Dinoire in November 2005 (Chatelet, 2007). Chatelier's double hand transplant has become a great medical success. A year after the transplant his new hands functioned in a very satisfying way, and they continue to do so. Hallam's hand graft, by contrast, became a debacle. He could not get used to the strange hand and therefore stopped taking the indispensable immunosuppressant drugs in order to force an amputation, which was eventually carried out in 2001. These hand transplant stories are spectacular and received a lot of attention in all kinds of media. Obviously, this is not surprising because these types of high-tech medical interventions trigger our imagination. Fantastic tales seem to become real now, featuring Dr Dubernard as the incarnation of Mary Shelley's Dr Frankenstein. Psychologists attached to Dubernard's team sometimes use the term 'Frankenstein Sydrome'. As a transplantation patient, you have to live with the thought that a piece of a dead person's matter is now part of you - and imagine that this strange part may take over control. This may be strange to third persons as well. These psychologists reported their own feelings when one of the patients who had had his hand transplanted started to bite 'his' nails - it gave them the creeps (Burloux and Bachmann, 2004). Although one is probably not fearful of surgeons like Dubernard creating a 'monster' out of various bits of dead body tissue, one might have some ethical complaints concerning the transplantation of visible body parts. Dickenson and Widdershoven (2001) have outlined the kind of ethical questions that could be at stake in limb transplantation. Comparable to other hightech medical interventions, limb transplantation raises ethical questions, such as the question of the patient's autonomy, his or her right to harm him- or herself;

398

The Right to Bodily Integrity

74

Body & Society Vol. 16 No. 3

the question of whether the costs of such an intervention outweigh the benefits, and whether these should be reimbursed by public resource allocation; and the question of whether these kinds of interventions are really meant as therapy instead of just fundamental medical research. These questions, in fact, can be reduced to the four principles of 'principlist ethics', i.e. autonomy, well-being, justice and non-maleficence (Beauchamp and Childress, 1994). But they continue that limb transplants may conjure up some idiosyncratic concerns which involve the question of bodily integrity and identity, and which have 'more to do with a narrative or hermeneutic style of ethics' than with 'principlist' bioethics (1994: 123). They suggest that transplanting a hand may be morally appropriate since this bodily modification 'may be consistent with respect for the bodily integrity of both donor and recipient, and the recipient may be able to integrate the new limb into his or her personal identity in a satisfactory way' (1994:124). Additionally, they put forward that this narrative integration is also related to interpersonal relations, since a hand is not a mere neutral body part; rather, it also expresses intimacy. Not only the recipient, but also his or her loved ones, have to live with the new hand. In this article, we would like to expand upon these points and explore the conditions for the successful integration of a new limb into one's identity. Although we can distinguish between identity and integrity, both are intrinsically connected to each other. Whereas identity refers to who or what a person is, integrity refers to the unity and wholeness of this person. Being somebody, being a unique individual, presupposes a wholeness or unity - an integmm.2 Because of this intertwinement we will explore identity and integrity parallel to each other and concentrate on the sense of wholeness, oneness and unity involved. Integrity and Body Image Since Paul Schilder's (1935) well-known study on the image and appearance of the human body, phenomenological as well as psychological literature dealing with the question of the body's unity commonly refers to the notion of 'body image' and 'body schema' (see Slatman, 2007; Weiss, 1999). We believe that bodily integrity can indeed be considered as a crucial constituent of the 'body image', which involves a system of perceptions, attitudes and beliefs pertaining to one's own body, including sets of beliefs, attitudes or dispositions (Gallagher, 2005:24-5). Body schema, implying a system of sensory-motor capacities that function without awareness or the necessity of perceptual monitoring (Gallagher, 2005: 24-5), can also be of interest for bodily integrity, especially if one looks at the way in which people who have lost a body part experience their body from a

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity

399

75

functional perspective. A limb amputation often severely disrupts a person's 'motor intentionality' (Merleau-Ponty, 1962 [1945]), i.e. the person's capacity to perform all kinds of physical actions without consciously monitoring them, such as grasping a cup. The loss of this functionality can be experienced as a loss of completeness. Although this functional view is important for explaining how amputees experience their body, we will concentrate, in this article, on the visual, 'imaginary' aspect of body experience (i.e. body image). Indeed, Hallam's failed transplant cannot simply be explained in terms of dysfunction (i.e. in terms of body schema). We believe that he was not able to identify with his body (part) such as it appeared to himself. As maintained elsewhere (Slatman, 2007), 'imaginary' identification does not imply narcissistic identification with a visual image only. One can also identify oneself with 'affective images' of the body. The 'affect body image' refers to the (psychoanalytic) idea that the unity of an ego is not conceivable without the skin (Anzieu, 1995); it refers to the 'haptic' dimension of an image (Marks, 2000). In this article, we will not explicitly employ the body image vocabulary, in order to avoid over-complicating our theoretical argument. Yet we hold the view that the reidentification at stake in rediscovering one's integrity after amputation and transplantation implies both a visual, narcissistic and an affective, haptic identification with one's body as it appears to oneself (i.e. one's body image). Being able to be the body one has, implies for the hand transplant recipient being able to appreciate and accept both the strange body part's visual features - which clearly was not the case for Clint Hallam - and its haptic, affective aspects. As we will explain later, it is especially because of the haptic, affective dimension of one's body image that the process of (re)-identification is not merely subjective, but rather intersubjective. Chatelier (2008:119) perceived that others had problems accepting his new hands, refusing to shake his hand, claiming that they were not real hands, or that they were the hands of a murderer or rapist perhaps. Also, it is not surprising that Chatelier's wife had a hard time living with the new hands and eventually left her husband. Rejection of the hands by others impedes the process of re-identification. Conversely, their 'haptic' endorsement surely supports this process: Chatelier (2008: 104) - a confirmed Catholic - claims that his visit to the Pope and the latter's cordial handshake provided him with an energy that will last his entire life. Repairing One's Body's Impaired Integruml The French philosopher Jean-Luc Nancy underwent a heart transplant in 1990 and, on the basis of his personal experiences of his disease, transplant and recovery,

400

The Right to Bodily Integrity

76

Body & Society Vol. 16 No. 3

he published a short philosophical essay on bodily identity and integrity 'L'Intrus' (2002 [2000]) - The Intruder'. At one point, he writes that the transplant seems to present itself as a possible restitutio ad integrum (2002 [2000]: 8). Indeed, one could say that a malfunctioning organ may cause the experience of loss and even of self-alienation. Nancy writes that his sick heart felt like improper food on his tongue; something he would like to spit out (2002 [2000]: 3). He no longer experienced his heart as part of his sense of ownness; instead he experienced avoid suddenly opened in his chest (2002 [2000]: 4). We can imagine that this experience of losing one's wholeness and unity might be even stronger in cases of limb amputation. And, in that sense, a limb transplant can be seen as something that repairs this loss. However, Nancy does not straightforwardly claim that the transplant did restore his integrum. This had, first of all, to do with the fact that the new heart caused a new sequence of self-alienations: the depression of his immune system and the subsequent development of a lymphoma (cancer). All these phenomena highlight that experiencing one's own body really as one's own (propre) is not immediately obvious. In sickness and transplants, as well as in many forms of treatment, one's oneness and ownness is intruded upon by something strange (I'etranger). Most striking in Nancy's analysis is that he eventually claims that our bodily identity is always characterized by strangeness - not only in cases of sickness or transplants. The heart transplant had only emphasized the experience that one's own identity is always intruded on by something foreign or strange: 'never has the strangeness of my own identity, which I've nonetheless always found so striking, touched me with such acuity' (2002 [2000]: 10, our emphasis). Nancy eventually claims that one's 'own body' is never fully one's own, or fully experienced as one's own. But he does not give a clear account of what this strangeness actually means. In the next section, we will describe it while drawing on the phenomenological notion of ^o^er-experience. Perpich (2005) has rightly argued that Nancy's account of the body involves a radical critique of traditional and humanistic discourses that stress the unity and ownness of one's own body. It is indeed true that Nancy, while exposing a permanent strangeness in one's own body, dismisses the idea of integrity founded in a constant and permanent substance (be it physical or mental). Yet, we do not believe that this should imply that we can only think of the body in terms of 'dis-integration', as Perpich suggests, thus abolishing the idea of bodily integrity altogether.3 In our view, bodily integrity is based upon a double-sided experience of oneself which is rooted in the body's difference or ecart (MerleauPonty, 1968 [1964]), referring to the fact that, although one may experience one's body both as object and subject, these experiences will never fully coincide. This

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity 77

idea corresponds to what Nancy himself has called bodily difference (1996, 2006). Bodily integrity should be understood as a 'differential' rather than a 'substantial' wholeness. In the following sections, we will explain this 'bodily difference' as an interdependent relation between two experiences of one's own body, while summarizing some basic phenomenological ideas. Having and Being a Body: Korper and Leib Western medicine and health care are essentially determined by the conviction that the body is a machine or a thing which can be thoroughly 'deciphered' (Foucault, 1963). The body subjected to all kind of contemporary medical technologies such as (allograft) organ, tissue or limb transplantation is a body 'in parts', which is thoroughly Cartesian (Hacking, 2007). Most typical of this objectifiable and malleable body is that we can consider it as something that we have. Husserl and Merleau-Ponty founded their phenomenology of the body, in the early 20th century, while fundamentally criticizing the (scientific) reduction of the body to a mere object. Their analyses are still valuable in helping to identify the (ethical) limitation of the prevailing one-sided conception of the body (and its integrity) in health care practice today. Husserl (1989 [1952]) claims that, if we look at how we perceive our own body, we will see that it cannot simply be reduced to a thing, thus challenging the Cartesian idea of the body as thing or res extensa. According to his description, self-perception involves two experiences: one can experience one's body as a thing or Korper, but also as a lived body or Leib.4 This distinction involves a distinction in experience, not in physical substance. Phenomenologically, the two experiences can be distinguished as follows: (a) ^o^er-experience: while touching one's left hand with one's right hand, one can experience one's left hand as a 'physical thing' with a certain extension and with certain properties, e.g. smoothness or roughness - this experience is similar to the way one experiences other objects and things; (b) Le^-experience: while touching one's left hand with one's right hand, one can also experience the left hand as one's own. This experience is based upon so-called localized or nonintentional sensations (or 'sensings'). Not only touch sensations but also pain, proprioceptive and kinesthetic sensations are non-intentional. These sensations do not constitute physical properties such as smoothness or roughness and thus they do not constitute the physical thing 'left hand'. Rather, they constitute the experience that one feels in one's left hand that it is touched; the touched hand senses it's being touched. They thus constitute the ownness of one's body. We believe it is accurate to say that the A'o^er-experience corresponds with the

401

402

The Right to Bodily Integrity

78

Body & Society Vol. 16 No. 3

experience of 'having a body' and the Le^-experience with the experience of 'being one's body'. The presence of both intentional and non-intentional or localized sensations is, according to phenomenology, responsible for the idiosyncrasy of embodied self-experience. Whereas intentional sensations result in the perception of an object and its properties appearing in a certain perspective, non-intentional sensations do not result in object perception but rather in the perception of certain sense intensities (rather than qualities) in and on one's body. Self-perception involves both forms of sensations. One's own body is therefore the only thing that can appear both over 'there' in a perspective (as Korper) and in an absolute 'hereness' without perspective (as Leib) (Slatman, 2009a). The body as Korper appears and remains at a distance and can therefore also be considered as something foreign or strange.5 'Having a body' expresses exactly this distance towards one's own body. What Husserl has called Leib has been translated as 'one's own body' (le corps propre) or 'the lived body' (le corps vecu) (Merleau-Ponty, 1962 [1945]), and this notion has become crucial for criticizing the Cartesian idea of the body which still prevails in contemporary medicine. It is noticeable that various phenomenologists oppose the idea of Leib to the idea of the body as a thing, a corpse (see Leder, 1992; Toombs, 1992). It is true that, at first sight, Husserl's analysis seems to head straight for a new kind of dualism: the experience of Korper versus the experience of Leib. However, if we look a little bit closer at the example of the two touching hands, we see that things are more complicated. As said, the experience of Leib is constituted by localized sensations, which means that the touched hand feels itself being touched. Feeling one's own touchability is only possible if the hand is also experienced as something that can be touched. And this is only possible if the hand is also experienced as a touchable thing or Korper. Hence, the experience of Leib presupposes and affirms the experience of Korper (Slatman, 2005). To phrase it differently, there is no such thing as a pure experience of Leib. If that were the case, Leib would be something disembodied, similar to Descartes' idea of mind or res cogitans (Waldenfels, 2004). On the basis of this phenomenological analysis of the relation between ^OT^er-experience and lef^-experience we can further explain Nancy's claim that one's own body is always already intruded upon by something foreign or strange (etranger) or strangeness. Since the 'thereness' of the Xo'^?er-experience cannot be reduced to the 'hereness' and the 'ownness' of the Le^-experience, and since the Le^-experience presupposes and affirms the Xo^er-experience, the 'ownness' of one's body is conditioned by strangeness.

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity

403

79

Disturbed Embodied Self-experiences Although Leib and Korper are intrinsically linked to each other, it is perfectly possible that the experience of strangeness can dominate and displace the experience of ownness. This is the case if one is unable to consider one's own body other than a thing or Korper. This might have a neurological reason as is the case in a paralyzed or sleeping limb. Denis Chatelier writes that, just after the hand transplant, he was not able to call the new hands 'his' hands especially because they felt numb and inflated. Since the sensorimotor and proprioception innervations had not yet fully recovered, localized sensations were not yet possible. Without localized sensations the transplanted hands could not be experienced as lived; he did not experience them as his own. One can imagine that as long as the hands felt numb and as long as he could not move or use them, they felt even more strange than prostheses. Since prostheses can rehabilitate a person's sensorimotor capacities, they can restore a certain experience of intactness and completeness (which, however, was not the case for Chatelier). If a person is successfully adjusted to using a prosthesis, one could say that the device is 'incorporated' within this person's body schema. This incorporation can be experienced in different ways: some people experience the incorporated artificial limb as part of their own body whereas others experience it only as an enabling and valuable tool (Murray, 2004). Both experiences differ from Chatelier's initial experience of 'his' numb and useless hands. Another experience in which the Leib-Korper relation is modified is the experience of a phantom limb. This is the experience that one's amputated limb is still present. The majority of amputees suffer from this disturbed embodied self-experience. Denis Chatelier describes this peculiar experience too; after the accident and before he got his prostheses, he could feel his lost hands when he was scratching the stumps of his arms. He once even tried to catch a falling bottle with his ghost hands (Chatelier, 2008:59-60). This experience of the presence of a limb which in actual fact is no longer present is, according to neurologists, caused by a reorganization of the neuronal map in the brain (Ramachandran and Hirstein, 1998). This neuronal re-mapping produces the illusion of localized sensations 'in' an absent limb. From a phenomenological perspective one could say that a phantom limb refers to the situation in which one experiences one's Leib without an actual Korper (although some report that the phantom limb can also be experienced as a 'thing', especially when the phantom is painful; Sacks, 1985). Conversely, the experience of a numb or paralyzed limb implies the dominance of A'dr^er-experience over Le^-experience.

404

The Right to Bodily Integrity

80

Body & Society Vol. 16 No. 3

The relation between Leib and Kdrper can also get disturbed through non-neurological causes. It is possible that, despite the presence of localized sensations, one is not able psychologically or emotionally to recognize one's own body as one's own. An extreme example of this is the rare disorder Body Integrity Identity Disorder (BUD); people suffering from BUD strongly desire to have an amputation of one (or more) of their healthy limbs. One explanation for this disorder is that there is a 'mismatch' between one's experience of the body and the actual body (see Bayne and Levy, 2005; Sorene et al., 2006). BUD is an example of how people with a 'normal' and 'intact' body may have the experience of an unacceptable strangeness in their body by means of which they do not experience it as a real integrum: they are not able to be the body they have (Slatman and Widdershoven, 2009). One of the participants in Melody Gilbert's documentary on BUD, who introduces himself as someone who 'became a person late in life', says that it was only after having his left leg amputated that he had become 'whole'.6 It goes without saying that we cannot draw a parallel between BUD and Clint Hallam's case. There is no reason to believe that Hallam had ever wished to amputate one of his healthy limbs. And his eventual wish to have the transplanted hand amputated cannot be compared with the wishes of BUD sufferers. Yet the wish itself can be explained by the fact that he was not able to be the body he had. Despite the presence of localized sensation and the sensorimotor and proprioception system working well, he could not but experience the hand as a thing; a Kdrper that persisted in being a Fremdkorper (i.e. foreign or strange body). Hallam's transplant resulted in the elimination of the difference between Leib and Kdrper. Indeed it eliminated bodily difference and thus violated his bodily integrity. Integrity and Difference The phenomenological analysis of the Le^-experience and /former-experience and their interdependent relation shows that one's own body is always differing from itself; it does not coincide with itself. It is 'diffe'rant' (Nancy, 1993:58). This means that, between the experience of being an object and the experience of being a lived embodied subject, there remains an e'cart, a divergence; indeed, the touching (touchant) and the touched (louche), although reversible, never coincide (Merleau-Ponty, 1968 [1964]: 147-8). We would say that having and being one's body never fully coincide. Even if one is capable of identifying with the body one has, this does not imply that the difference between having and being one's body is thereby abolished.

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity 81

Provocatively, Nancy (2002 [2000]: 11) maintains that identity should not be seen as I = I (I am I because I coincide with myself). Leaving behind the conventional idea of identity as 'adequation', we should rather say I ^ I (I am I because I differ from myself). On the basis of this idea of 'differential identity' Nancy writes about himself: I am the cancer cell and the grafted organ, I am the immuno-depressive agents and their palliatives, / am the bits of wire that hold together my sternum, and I am this injection site permanently stitched in below my clavicule, just as I already was these screws in my hip and this plate in my groin. (2002 [2000]: 13, emphasis added)

Instead of saying 'I have', he says 'I am', which makes explicit that identification is at stake here. Taking seriously the permanent character of the body's inherent difference, this identification does not imply that the experience of strangeness is equalized with or absorbed into something like a pure Le^-experience of one's body. Precisely because the Le^-experience affirms and presupposes the ^otyer-experience, the process of identification remains open, enabling constant ex-corporation and incorporation. Weiss (1999:127), exploiting the term 'body images' to indicate that bodily coherence or completeness is never fixed but rather incorporates a multiplicity of (ever changing) experiences of one's own body, maintains that the ecart - the space of differentiation - is fundamental for this openness and plurality. Criticizing the (dominant) idea of bodily integrity based upon a biological or 'substantial' wholeness, she describes integrity as something that can be created through 'developing a greater sensitivity to one's bodily changes, capacities, movements and gestures' (1999: 53). Similar to this idea, we seek to provide a concept of integrity based upon bodily difference or ecart. Yet we believe that an integrum does not come into being through a sensitivity to one's own body alone. It also requires a more 'active' stance towards these changes: one needs to recognize, value and (possibly) adjust to them. Moreover, whether this active process will effectively result in an identification with one's changing and changed body is also dependent on the reactions of others. Respecting one's bodily integrum means that one respects the difference and non-coincidence of Leib and Korper, of being and having one's body. Violation of the body essentially involves the ignorance of its difference or noncoincidence. One's bodily integrum can be affected or disrespected at two different but related levels: at (1) an intersubjective and (2) a subjective level. An example of (1) intersubjective violation is when another treats a person's body as a mere material substance, a mere Korper, as is obviously the case in torture and rape. But the opposite is also true. One would also violate a person if this

405

406

The Right to Bodily Integrity

82

Body & Society Vol. 16 No. 3

person's body were seen as something purely lived through, a pure Leib, ignoring this body's physical appearance, its Korperlichkeit. Bodily integrity can thus be intruded upon when another person does not respect one's Leib in relation to one's Korper. In addition to this external intrusion, one's bodily integrity can be affected subjectively (2) by one's own disturbed embodied selfexperience. This is the case when a person is not able to identify with his or her own Korper. We must add here that the subjective and intersubjective views on one's bodily integrum are interconnected. The way one perceives and values oneself, one's 'me', is determined by how others perceive and value it (see Mead, 1962 [1934]). Someone with congenital aplasia of a limb, for instance, can have an experience of bodily wholeness, despite the lacking limb, if he or she, from early childhood on, has been positively valued and has received the possibility to positively identify with other people lacking a limb. If, on the other hand, this kind of positive social valuation is missing, it might be very hard to identify with one's 'incomplete' body in order to regain one's bodily integrum. Integrity, Integration and Identification What we have argued so far is that bodily integrity is not a wholeness which is pre-given. Rather, it involves an (ongoing) process of integrating experiences of one's body, and relating this to one's Le^-experience. We will now examine the conditions on which this process takes place after hand transplantation. A grafted hand indeed implies a radical change of the body one has. One literally has to incorporate the strange hand. This is only possible by means of 'tolerance', 'the Holy Grail for transplant physicians' according to Dr Dubernard (Chatelier, 2008: 147). This tolerance has to take place on various interdependent levels: immunological, neurological, psychological, emotional and social. Immunological acceptance seems to be the first requisite in transplantations. Normally one's immune system rejects intruding elements such as viruses, bacteria and strange body tissues. To enable an immunological tolerance, one's immune system has to be suppressed by means of immunosuppressant drugs. The transplant recipient needs to use these drugs for his or her entire life. Clint Hallam, who wished to have the grafted hand amputated, stopped taking this medication, which caused immunological rejection whereupon the Fremdkorper had to be removed. Another acceptance takes place in the central nerve system when the representation of one's body in the cortex adapts to the changes in one's actual body. This has been established by means of fMRI research on Denis Chatelier's brain before and after his double hand transplant.7 Observations showed that, during

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity 83

the period that Chatelier was using prosthetic devices, the brain part that formerly (before his hands were amputated) represented the area of the arms had changed in such a way that it was now representing the area of the elbows (the prostheses' extremity). A couple of weeks after the transplant, the brain part in question changed to represent the area of the hands again. Neurologically speaking, the strange hands were 'integrated' within the neuronal body image (Giraux et al., 2001; Petruzzo et al., 2006). In addition to this immunological and neurological acceptance, one should be able to actually fit the new limb into one's life, which implies not only that one can purposefully cope with the strange limb, but also that one is able to endow it with a positive meaning. We believe that Hallam's rejection of the grafted hand was primarily instigated by a psychological and emotional incapacity to accept it. Despite the fact that his transplanted hand functioned well, which affirms the immunological and neurological acceptance, he could not positively relate to it as if it were his own hand. The hand was too strange. Hallam literally spoke of a mismatch: 'The donor hand was bigger than my hand, bald and pink - and my skin is olive-toned and with hair. It didn't match' ('First Hand Transplant Man ...', 2008). It is quite possible that the failure of psychological adaptation was reinforced by poor neurological plasticity. As some claim, it was 'quite illusory to expect that there could be a reintegration of a hand into the [neuronal] body image fourteen years after its amputation' (Merle, 2001: 522). Be that as it may, Hallam's rejection of the strange limb manifested itself most clearly as a psychological and emotional rejection. Tolerance should thus not only result in physical, neurological and immunological adaptation, but also in the possibility of affirming: 'This is me', 'I do not only have this hand, I am this hand I have.' Or, as Nancy says: 'I am the bit of wire that holds together my sternum ...' (2002 [2000]: 13). I identify myself with a piece of Korper. Denis Chatelier writes that when he saw his new hands for the first time, he was horrified. In the period just after the operation he could only speak of 'the hands'. An important moment in his recovery was the moment that he called them 'my hands' (Chatelier, 2008:82). At that very moment he positively identifies with his actual (modified) body, which, in fact, restores his bodily integrum: he is the body he has. Clint Hallam, conversely, could not positively identify himself with the strange hand, which disturbed his experience of bodily wholeness. Bodily Re-integration and Narrative Fit Regaining one's bodily integrity after a drastic physical change such as a hand transplant basically means being able to identify with the changed body. Since

407

408

The Right to Bodily Integrity

84

Body & Society Vol. 16 No. 3

this process of identification is an open process, one can only meaningfully assess this against a temporal horizon. It would be inadequate just asking a patient about his/her experiences of his/her body. One should rather ask about these experiences in relation to the patient's earlier experiences, his/her expectations and his/her situation, values, etc. We thus endorse the hermeneutical idea that bodily experience expresses itself in life-stories. Assessing a person's bodily experience (of wholeness) should therefore rely on the interpretation of this person's life-story (Ricoeur, 1991). To prevent hasty conclusions, this intrinsic relation between lived experience and narrative does not simply mean that bodily re-integration is the result of narrative reintegration, as if a certain 'representational' integrity would be necessary to gain bodily integrity. To trace whether and how bodily re-integration is achieved in Chatelier's and Hallam's story, we make use of the idea of 'narrative fit'. Hilhorst speaks of a 'narrative fit' when bodily modifications correspond with a person's lifestory. He uses this while assessing the impact of cosmetic surgery (2002) and the use of prosthetic limbs (2005). If one is able to fit bodily changes or the use of certain devices into one's life-story, and into one's set of values, one's identity and integrity will not be affected. If, conversely, one's new appearance does not fit in a life-story, as is the case, for example, in an 80-year-old woman who uses aesthetic surgical means to look 40, one's identity disintegrates. The elimination of wrinkles and the tightening of flabby skin, which implies indeed the effacement of embodied temporal traces, may result in the odd combination of having an unwrinkled 'young' face with the behaviour, life experience, typical motility and embodied agency of an old lady. This implies a problematic new identity, for the person in question as well as for others. Such a narrative misfit implies the disintegration of one's life-story and thus refers to a breakdown of this person's integrity. Let us now take a closer look at the stories of Chatelier and Hallam. The stories of the two men are literally intertwined. Chatelier, a French house painter, lost his two hands in 1996 due to a fireworks accident. He felt horribly impaired by the loss of his hands - 'without hands, one is nothing' (Chatelier, 2008: 59). He got two prostheses to restore some of his autonomy. But he could not adapt to them and experienced them as clumsy and painful. After he saw a television programme in 1998, in which Dr Dubernard showed Clint Hallam and his new hand, Chatelier regained hope for a better life. Immediately after the programme, he wrote a letter to Dr Dubernard, in which he described his desperate situation and his strong wish to have two hands again. Dr Dubernard, who was very touched by this letter, invited Chatelier for a

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity

409

85

consultation and decided that he was the perfect candidate for the world's first double hand transplant operation, which was subsequently performed in January 2000. Chatelier's transplant was thus initially inspired by Hallam's story. The two men also met in 2000, just after Chatelier's operation. Hallam supported Chatelier and told him to be strong and work hard (Chatelier, 2008: 82). Since then, the stories diverge; whereas Chatelier's became a success story, Hallam's failed. At first, Hallam's transplant was also a medical triumph: the New Zealander, on both an immunological and a functional level, incorporated the alien body part more or less successfully. After three years, however, he had the hand amputated, because, as he claims himself, the hand did not match. The medical team, on the other hand, claimed that the reason for amputation was that Hallam did not cooperate with doctors and therapists; that he was not a reliable person (see 'Sleight of Hand', 2000). This characterization as being unreliable is mainly based on the fact that Hallam had served some years in prison for fraud. Interestingly, Chatelier also has a criminal past. As a youngster he spent some time in prison for robberies (Chatelier, 2008: 29). However, in contrast to Hallam's story, Chatelier's past has never been an issue for the medical staff, and has never been mentioned in the press. Apparently, if the story has a happy ending, a sin of one's youth is of no importance. If, on the other hand, the medical story lacks success, it is easy to explain this on the basis of a misstep in a person's past. Instead of drawing attention to these sensational details, which easily results in superficial moralism, we would like to focus on other normative aspects involved in the treatment of people who have lost a body part. Whether such treatments are appropriate or not depends on the degree to which one's bodily integrity is respected and this corresponds to the degree of narrative fit. Chatelier's story makes explicit that the medical intervention restored his feeling of wholeness, which he had totally lost after the accident in which he lost both his hands. The regaining of two hands, even though they are not his own, perfectly fits into his life-story. Chatelier is a family man who needs his hands to make a living. His hands are his life. Without hands, he was nothing, a nobody; after the successful transplant he regained his dignity (Chatelier, 2008:127). In his case, the hand transplant constituted a narrative fit. Contrary to Chatelier's, Hallam's wish for a new hand transplant was not instigated by a total feeling of impairment. Hallam is not a manual worker. And since he only lost one hand, he was not hindered to the same degree. Even with one hand he water-skied and rode a motorbike ('Hand of Fate', 2000). The idea of having a transplant came about because of the failed re-attachment of his

410

The Right to Bodily Integrity

86

Body & Society Vol. 16 No. 3

severed hand immediately after the circular saw accident in 1984. At the time of this accident, medical transplantation technology did not yet include the possibility of limb transplants. But, as Hallam says in an interview: 'I also thought that if they could do hearts and livers, one day they would be able to do limbs too' ('Hand of Fate', 2000). The wish for a new hand might have been more an obsession than a need that was urged by his feeling of physical impairment. As Hallam says himself: Tor years, I had just one fixed idea: I'm going to get a transplant, I am going to get a transplant' ('Sleight of Hand', 2000). In contrast with Chatelier's positive and grateful feelings for his new hands, Hallam was disappointed from the beginning. As he retrospectively notes: 'as soon as I saw it [the new hand], I didn't like it. But what could I say?' (Tirst Hand Transplant Man ...', 2008). In any case, it is clear that Hallam's new hand did not restore his bodily integrum. The hand did not fit in; Hallam did not positively identify with it. It only remained a Korper he had and which he could not experience as his own. To finally re-establish his integrum the Fremdkorper had to be amputated. A couple of months before this amputation, Hallam said in an interview: 'One of the hard things for me is that I am almost more handicapped than when I just had one and half hands' ('Living with a Dead Man's Hand', 2000). If we focus on Hallam's embodied self-experience, we can state that eventually the hand transplant violated his bodily integmm instead of restoring it. Conversely, the choice for the double hand transplant in Chatelier's case was right (if we bracket the fact that the technology of transplanting limbs is still in an experimental phase, and that one does not know how long the donor tissue will endure, nor what the risks of longterm immunosuppression are; Jones, 2002). He had lost his experience of embodied wholeness and the transplant restored it. Doctors and other health care professionals treated him in an appropriate way by supporting the restoration of his lost integmm. We also have to add here, however, that Chatelier's transplant was not right for everyone. His wife, Isabelle, left him a year after the operation. She could not bear it that her husband had changed so much at once and had become the famous 'double hand transplant guy'. Apparently, Chatelier's own positive valuation of his new two-handed body did not coincide with his wife's appreciation of it: for him the two new hands had the meaning of regained independence, while for her, they were, first of all, two strange body parts with which she had to re-establish an intimate relation (Dickenson and Widdershoven, 2001). Although the two new hands are Chatelier's hands, he has to share them with people with whom he shares his life. Being held and caressed by the same man but by two hands with a different history and story might be very bewildering and even unbearable. The strange hands had also to be integrated in Isabelle's life and story.

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity

411

87

Conclusion and Discussion The loss of one or both hands and the subsequent hand transplant can affect one's embodied self-experience in different ways. In this article, we were particularly interested in changes in the experience of bodily wholeness. The variety of (disturbed) body experiences we have identified include: phantom limb sensation; experience of numbness of the grafted hands; experiences of (un)successfully incorporating a prosthetic device; experience of truly integrating strange body parts into one's own body; and experience of a 'misfit' with a neurologically and physically well-functioning body part. The majority of people who have lost a limb suffer from phantom limb sensations. This sensation involves a ghostly and ambivalent experience of bodily wholeness. Sacks (1985) states that, for many amputees, the sensation of a phantom limb can facilitate the use of prosthetic devices. One could therefore say that in these cases the phantom enables the rehabilitation of a functional bodily wholeness. However, this does not apply to all amputees, since a phantom limb can be very painful (Kooijman et al., 2000), which, together with stump pain, impedes the use of prostheses. Chatelier suffered a lot from stump pain when he was using prosthetic devices and therefore they did not function effectively. Hence, for him, the prostheses did not contribute to the restoration of his bodily wholeness. However, if one is able functionally to incorporate the device into one's body schema, this may constitute an experience of 're-completion' (De Preester and Tsakiris, 2009). After the removal of his grafted hand, Clint Hallam again uses a prosthetic device. This artificial hand is rather simple and not very functional, and Hallam claims that he mainly uses it for cosmetic reasons.8 He thus prefers the nonfunctional synthetic hand to the grafted hand of flesh and bones which initially functioned rather well. Apparently, in his case, the recovery of functionality and motility was not sufficient to constitute an experience of re-completion: the experience that the grafted hand was strange and could not be integrated in his own body was stronger. Hallam's case shows very clearly that the experience of bodily wholeness can involve more than biological, neurological and functional completeness. From this we can draw the normative consequence that 'normalizing' interventions are not always justified; they can sometimes even violate a person's integrum? A normalizing operation is justifiable only if the intervention enables the person to be the body he or she has. Chatelier's case reveals another normative aspect of radical contemporary surgery. It is striking that Chatelier, during the medical intervention and the period of rehabilitation, has been treated as an isolated subject, separated from his wife and family. They learned from a

412

The Right to Bodily Integrity

88

Body & Society Vol. 16 No. 3

television broadcast that he had received new hands! (Chatelier, 2008:86). Especially since hands are 'shared' body parts, major modification of these parts should also be discussed with those who might be caressed and held by them. In this article, we have restricted our analysis of the experience of bodily wholeness to a reading of secondary data concerning the cases of Hallam and Chatelier. The scope of our phenomenological-narrative approach, however, is much larger. We believe that it would be very fruitful to apply this approach to the practice of medical counselling prior to major surgical interventions. Further research should therefore expand upon the question of how the focus on bodily experience and life-stories can be implemented in the dialogue between physician and patient (Emanuel and Emanuel, 1992; Widdershoven and Abma, 2007), in medical shared-treatment decision-making models (Charles et al., 1999, 2003) and, subsequently, in how this can contribute to the making of decisions which eventually respect a patient's bodily integrity.

Notes 1. Hallam told his story to the British newspaper the Sunday Minor ('First Hand Transplant Man ...', 2008). See also the documentary Blood and Guts: A History of Surgery, Episode 3, 'Spare Parts', broadcast by BBC 4 in 2009 (available online at: www.youtube.com/watch?v=U917T7YOJkk). 2. 'Integrity defines those parts of human life which make up its personal identity and should not be manipulated or destroyed' (Rendtorff and Kemp, 2000:39). 3. In fact, Perpich claims that the idea of integrity is not necessarily something good or something morally desirable. Indeed, it can also be considered as a (violent) myth, which may cause undesirable effects. For instance, bodily integrity is an essential value within feminist discourse and politics that is employed to challenge violence against women. Yet, at the same time, the very idea of bodily integrity as an idea of wholeness can severely frustrate feminist politics: the (mythical) idea of an intact virginal membrane, intact virginity, easily runs counter to the right of sexual and conjugal self-determination. Although we agree with this observation, we still wish to defend the idea of integrity. As we will explain in this article, the body's integrum should not be defined by some preconceived political or religious idea, but should be deduced from bodily self-experience. 4. The common English translation for the German words Leib and Korper are 'Body' and 'body'. We find this a rather unsatisfactory translation since it fails to differentiate between the experience of what is 'lived through' (Leib, leben, life) and the experience of thinghood or even unanimated matter (Korper, corpse). Therefore, we prefer to use the original German terms. 5. It is important to note that 'foreign' or 'strange' should not be understood in the sense of 'odd' or 'peculiar'. 'Strange' refers here to anything that cannot be related to non-intentional sensations of one's own body. In that sense, one's own body always contains strangeness (Slatman, 2008,2009b). 6. Whole: A Documentary (dir. M. Gilbert, 2004; official website: http://www.whole-documentary.com/director.php). 7. For pictures, see Chatelier (2008). 8. See Blood and Guts: A History of Surgery, Episode 3, 'Spare Parts', broadcast by BBC 4 in 2009 (available online at: www.youtube.com/watch?v=U917T7YOJkk).

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity

413

89

9. Feminist phenomenologists, in particular, have made clear that imposing functional and physical (standard) norms on (female) patients' bodies is due to a biological idea of integrity (mainly based upon male anatomy and physiology). Deviations from the 'standard' norm (menstruation, childbirth, lactation) are therefore often seen as a rupture in integrity which needs to be fixed or medicalized (Diprose, 1994; Grosz, 1994; Young, 1990). Imposing 'ableist' norms on 'disabled' bodies presupposes the same idea of bodily integrity. Acknowledgements We would like to thank six anonymous reviewers for providing constructive comments and helpful suggestions on earlier versions of this article. This research has been funded by CAPHRI School for Primary Care and Public Health, Maastricht University Medical Center. References Anzieu, D. (1995) Le Moi-peau, rev. and expanded edn. Paris: Dunod. Ashley, B.M. (1985) Theologies of the Body: Humanist and Christian. Braintree, MA: The Pope John Center. Bayne, T. and N. Levy (2005) 'Amputees By Choice: Body Integrity Identity Disorder and the Ethics of Amputation', Journal of Applied Philosophy 22(1): 75-86. Beauchamp, T.L. and J.F. Childress (1994) Principles of Biomedical Ethics. Oxford: Oxford University Press. Burloux, G. and D. Bachmann (2004) 'Psychology and Hand Transplantation: Clinical Experiences', pp. 169-85 in Enabling Technologies: Body Image and Body Function. Edinburgh: Churchill Livingstone. Campbell, C.S. (1998) 'Religion and the Body in Medical Research', Kennedy Institute of Ethics Journal 8(1): 275-W5. Campbell, F. (2003) 'The Case of Clint Hallam's Wayward Hand', pp. 165-81 in J. Gifford and G. Zezulka-Mailloux (eds) Culture and the State: Disability Studies and Indigenous Studies. Edmonton: University of Alberta. Charles, C.A., A. Gafni and T. Whelan (1999) 'Decision-Making in the Physician-Patient Encounter: Revisiting the Shared Treatment Decision-making Model', Social Science & Medicine 49(5): 651-61. Charles, C.A., T. Whelan, A. Gafni, A. Willan and S. Farrell (2003) 'Shared Treatment Decision Making: What Does it Mean to Physicians ?, Journal of Clinical Oncology 21(5): 932. Chatelet, N. (2007) Le Baiser d'Isabelle: I'aventure de la premiere greffe du visage. Paris: Points. Chatelier, D. (2008) Je vis avec les mains d'un autre. Paris: Robert Lafont. Creswell, J.W. (2007) Qualitative Inquiry and Research Design: Choosing among Five Approaches, 2nd edn. Thousand Oaks, CA: SAGE. Csordas, T.J. (1993) 'Somatic Modes of Attention', Cultural Anthropology 8(2): 135-56. Csordas, T.J. (ed.) (1994) Embodiment and Experience: The Existential Ground of Culture and Self. Cambridge: Cambridge University Press. Dekkers, W., C. Hoffer and J.P. Wils (2005) 'Bodily Integrity and Male and Female Circumcision', Medicine, Health Care and Philosophy 8:179-91. Denzin, N. and Y. Lincoln (2000) Handbook of Qualitative Research, 2nd edn. Thousand Oaks: SAGE. De Preester, H. and M. Tsakiris (2009) 'Body-extension versus Body-incorporation: Is there a Need for a Body-model?', Phenomenology and the Cognitive Sciences 8(3): 307-19. Dickenson, D. and G. Widdershoven (2001) 'Ethical Issues in Limb Transplants', Bioethics 15:110-24.

414

The Right to Bodily Integrity

90

Body & Society Vol. 16 No. 3

Diprose, R. (1994) The Bodies of Women: Ethics, Embodiment and Sexual Difference. London: Routledge. Emanuel, E.J. and L.L. Emanuel (1992) Tour Models of the Physician-Patient Relationship', Journal of the American Medical Association 267(16): 2221-6. 'First Hand Transplant Man Gives his Wife the Elbow for His Nurse' (2008) Sunday Mirror 13 April. Foucault, M. (1963) Naissance de la clinique. Paris: PUF. Frank, A.W. (1995) The Wounded Storyteller: Body, Illness, and Ethics. Chicago, IL: University of Chicago Press. Gallagher, S. (2005) How the Body Shapes the Mind. Oxford: Oxford University Press. Giraux, P., A. Sirigu, F. Schneider and J.M. Dubernard (2001) 'Cortical Reorganization in Motor Cortex after Graft of Both Hands', Nature Neurosdence 4(7): 691-2. Grosz, E. (1994) Volatile Bodies: Toward a Corporeal Feminism. Bloomington, IN: Indiana University Press. Hacking, I. (2007) 'Our Neo-Cartesian Bodies in Parts', Critical Inquiry 34:78-105. Helman, C.G. (2007) Culture, Health and Illness. London: Hodder Arnold. Hilhorst, M. (2002) 'Physical Beauty: Only Skin Deep?', Medicine, Health Care and Philosophy 5(1): 11-21. Hilhorst, M. (2005) '"Prosthetic Fit": On Personal Identity and the Value of Bodily Difference', Medicine, Health Care and Philosophy 7(3): 303-10. Husserl, E. (1989 [1952]) Ideas Pertaining to a Pure Phenomenology and to a Phenomenological Philosophy, vol. 2, trans. R. Rojcewicz and A. Schuwer. Dordrecht: Kluwer Academic. Jones, N.F. (2002) 'Concerns about Human Hand Transplantation in the 21st Century', Journal of Hand Surgery 27(5): 771-87. Kooijman, C.M., P.U. Dijkstra, J.H. Geertzen, A. Elzinga and C.P. van der Schans (2000) 'Phantom Pain and Phantom Sensations in Upper Limb Amputees: An Epidemiological Study', Pain 87(1): 33-41. Leder, D. (1990) The Absent Body. Chicago, IL: University of Chicago Press. Leder, D. (1992) 'A Tale of Two Bodies: The Cartesian Corpse and the Lived Body', in D. Leder (ed.) The Body in Medical Thought and Practice. Dordrecht: Kluwer Academic. Leder, D. (1999) 'Whose Body? What Body? The Metaphysics of Organ Donation', pp. 233-64 in M.J. Cherry (ed.) Persons and their Bodies: Rights, Responsibilities, Relationships. Dordrecht: Kluwer Academic. 'Living with a Dead Man's Hand', BBC News 22 October 2000, URL (consulted May 2010): http:// news.bbc.co.uk/l/hi/health/980069.stm Lock, M. (1993) 'Cultivating the Body: Anthropology and Epistemologies of Bodily Practice and Knowledge', Annual Review of Anthropology 22(1): 133-55. Marks, L.U. (2000) The Skin of the Film: Intercultural Cinema, Embodiment, and the Senses. Durham, NC: Duke University Press. Mead, G.H. (1962 [1934]) Mind, Self, and Society from the Standpoint of a Social Behaviorist. Chicago, IL: University of Chicago Press. Merle, M. (2001) 'Some Aspects of Hand Transplantation', Journal of Hand Surgery 26(6): 522. Merleau-Ponty, M. (1962 [1945]) Phenomenology of Perception, trans. C. Smith. London: Routledge. Merleau-Ponty, M. (1968 [1964]) The Visible and the Invisible, trans. A. Lingis. Evanston, IL: Northwestern University Press. Moustakes, C. (1994) Phenomenological Research Methods. Thousand Oaks, CA: SAGE. Murray, C.D. (2004) 'An Interpretative Phenomenological Analysis of the Embodiment of Artificial Limbs', Disability and Rehabilitation 26(16): 963-73. Nancy, J.-L. (1993) Le Sens du monde. Paris: Galilee. Nancy, J.-L. (1996) Etre singulier pluriel. Paris: Galilee.

The Right to Bodily Integrity

Hand Transplants and Bodily Integrity

415

91

Nancy, J.-L (2002 [2000]) 'L'Intrus', trans. S. Hanson, New Centennial Review 2(3): 1-13. Nancy, J.-L (2006) Corpus, 3rd edn with additional texts. Paris: Editions Metaillie. Perpich, D. (2005) 'Corpus Meum: Disintegrating Bodies and the Ideal of Integrity', Hypatia 20(3): 75-91. Petruzzo, P., L. Badet, A. Gazarian, M. Lanzetta, H. Parmentier, J. Kanitakis et al. (2006) 'Bilateral Hand Transplantation: Six Years after the First Case', American Journal of Transplantation 6(7): 1718-24. Powers, T.A. (1999) cThe Integrity of Body: Kantian Moral Constraints on the Physical Self, pp. 209-32 in M.J. Cherry (ed.) Persons and their Bodies: Rights, Responsibilities, Relationships. Dordrecht: Kluwer Academic. Ramachandran, V.S. and W. Hirstein (1998) cThe Perception of Phantom Limbs', Brain 121: 1603-30. Rendtorff, J.D. and P. Kemp (2000) Basic Ethical Principles in European Bioethics and Biolaw, vol. 1: Autonomy, Dignity, Integrity and Vulnerability. Copenhagen: Centre for Ethics and Law. Ricoeur, P. (1991) 'Life in Quest of Narrative', in D. Wood (ed.) On Paul Ricoeur: Narrative and Interpretation. London: Routledge. Sacks, O. (1985) The Man Who Mistook his Wife for a Hat. New York: Summit Books. Schilder, P. (1935) The Image and Appearance of the Human Body. London: International University Press. Slatman, J. (2005) 'The Sense of Life: Husserl and Merleau-Ponty on Touching and Being Touched', Chiasmi International 7:305-25. Slatman, J. (2007) 'Recognition beyond Narcissism: Imaging the Body's Ownness and Strangeness', pp. 186-204 in H. Fielding, G. Hiltmann, D. Olkowski and A. Reichold (eds) The Other: Feminist Reflections in Ethics. London: Palgrave. Slatman, J. (2008) Vreemd Lichaam. Over medisch ingrijpen en persoonlijke identiteit [Strange Body: On Medical Interventions and Personal Identity]. Amsterdam: Ambo. Slatman, J. (2009a) 'A Strange Hand: On Self-recognition and Recognition of Another', Phenomenology and the Cognitive Sciences 8(3): 321-42. Slatman, J. (2009b) 'Transparent Bodies: Revealing the Myth of Interiority', pp. 107-22 in R. Van de Vail and R. Zwijnenberg (eds) The Body Within: Art, Medicine and Visualization. Leiden: Brill. Slatman, J. and G. Widdershoven (2009) 'Being Whole after Amputation', American Journal of Bioethics 9(1): 48-9. 'Sleight of Hand' (2000), The Guardian 30 May. Sorene, E.D., C. Heras-Palou and F.D. Burke (2006) 'Self-amputation of a Healthy Hand: A Case of Body Integrity Identity Disorder', Journal of Hand Surgery 31(6): 593-5. Svenaeus, F. (2001) 'The Phenomenology of Health and Illness', in S.K. Toombs (ed.) Handbook of Phenomenology and Medicine. Dordrecht: Kluwer Academic. Toombs, S.K. (1992) The Meaning of Illness: A Phenomenological Account of the Different Perspectives of Physician and Patient. Dordrecht: Kluwer Academic. Toombs, S.K. (1999) 'What Does it Mean to be Somebody! Phenomenological Reflections and Ethical Quandries', pp. 73-94 in M.J. Cherry (ed.) Persons and their Bodies: Rights, Responsibilities, Relationships. Dordrecht: Kluwer Academic. Toombs, S.K. (2001) 'Reflections on Bodily Change: The Lived Experience of Disability', pp. 247-61 in S.K. Toombs (ed.) Handbook of Phenomenology and Medicine. Dordrecht: Kluwer Academic. Van Manen, M. (1990) Researching Lived Experience. London, Ontario: University of Western Ontario Press. Waldenfels, B. (2004) 'Bodily Experience Between Selfhood and Otherness', Phenomenology and the Cognitive Sciences 3:235-48. Weiss, G. (1999) Body Images: Embodiment as Intercorporeality. New York: Routledge.

416

The Right to Bodily Integrity

92

Body & Society Vol. 16 No. 3

Widdershoven, G. (1993) The Story of Life: Hermeneutic Perspectives on the Relationship between Narrative and Life History', pp. 1-20 in R. Josselson and A. Lieblich (eds) The Narrative Study of Lives. London: SAGE. Widdershoven, G.A.M and T.A. Abma (2007) 'Hermeneutic Ethics between Practice and Theory', pp. 215-22 in R.E. Ashcroft, A. Dawson, H. Draper and J.R. McMillan (eds) Principles of Health Care Ethics. Chichester: Wiley. Young, I.M. (1990) Throwing Like a Girl and Other Essays in Feminist Philosophy and Social Theory. Bloomington, IN: Indiana University Press. Zwart, H. and C. Hoffer (1998) Orgaandonatie en lichamelijke integriteit: Een analyse van christelijke, liberate en islamitische interpretaties [Organ Donation and Bodily Integrity: An Analysis of Christian, Liberal and Islamic Interpretations]. Best: Damon. Jenny Slatman is assistant professor in the research institute CAPHRI, Department of Health, Ethics and Society, Maastricht University Medical Center. Her research includes philosophical and ethical analyses of bodily identity and integrity in reconstructive medicine, oncology and public health interventions, [email: [email protected]] Guy Widdershoven is Professor of Medical Philosophy and Ethics and head of the Department of Medical Humanities, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam. His research focuses on philosophical hermeneutics and ethics of chronic care, [email: [email protected]]

PartV Controversial Modifications and Surgeries

This page intentionally left blank

[16] SHOULD WE PREVENT NON-THERAPEUTIC MUTILATION AND EXTREME BODY MODIFICATION? THOMAS SCHRAMME

ABSTRACT In this paper, l discuss several arguments against non-therapeutic mutilation. interventions into bodily integritty, which do not serve a therapeutic purpose and are not regarded as aesthetlcally acceptable by the majority, e.g. tongue splitting, branding and flesh stapling, are now practised, but however, are still seen as a kind of aberration that ought not to be allowed. l reject several arguments for a possible ban on these body modiflcations, l find the common pathologisation of body modifficatins. Kant's argument of duties to oneself and the objection from irrationality all wanting. in conclusion, l see no convincing support for prohibition of voluntary mutilations.

INTRODUCTION Consider two cases: Ms A sees a doctor to get a breast amputated. She suffers from breast cancer. Her doctor has recommended the treatment and she has agreed. It is a straightforward case of a legitimate intervention into bodily integrity, because it is based on voluntary informed consent. Ms B also sees her doctor to get her breast amputated. She does not suffer from cancer but is a highly ambitious archer, who believes that her athletic abilities will be considerably enhanced by the amputation. She has read widely about the Amazons and therefore knows about the optimal preconditions of drawing a bow when the obstructing body part is removed. So in the case of Ms B we can also identify an example of voluntary mutilation. But the proposed

intervention nevertheless does not seem to be justified. Why?1 We could argue that Ms B, in contrast to Ms A, does not have a valid claim to get her breast amputated, because the desired amputation does not serve a reasonable cause like preventing premature death. In order to argue this way we need an account of what can and what cannot be accepted as a justification of voluntary mutilation.2 In the following, 1 In order to be able to disregard obvious objections, which are not important for what I am trying to establish, I presuppose that Ms B is competent, medically informed and prepared to bear the costs of the intervention and possible consequential disadvantages. I also presume that the surgeon does not see the amputation as a violation of his professional duties. 2 I do not distinguish between voluntary self-mutilation (maiming) and mutilation by others on grounds of informed consent.

Address for correspondence: Dr Thomas Schramme, University of Wales Swansea - School of Health Science, Centre for Philosophy, Humanities and Law in Health Care, Singleton Park, Swansea, SA2 8PP, UK. [email protected]

420

The Right to Bodily Integrity Non-Therapeutic Mutilation and Extreme Body Modification

I want to scrutinise the considerations which might explain and possibly justify the common discomfort regarding non-therapeutic mutilation.3 If we want to prevent or ban it, we need such a justification, because hi liberal societies any intervention into individual self-determination needs the support of a good reason. Although my leading question is phrased in legal terms, we need to consider moral and prudential issues as well, i.e. whether it might be wrong or unreasonable to self-harm. Although the latter considerations are only a starting point and we might opt against legally preventing voluntary body modifications for other reasons, e.g. economic costs, they are significant hi order to at least fulfil a necessary condition of banning non-therapeutic mutilations. If they cannot be shown to be unmoral or at least irrational, it would be difficult to justify its legal prevention. I believe that the case of extreme body modification is an ultimate test-case for liberal bioethics. It directly confronts two characteristics of a liberal attitude, namely to accept competent decisions even where they seem to be clearly unwise (antipaternalism) and not to impose particular conceptions of the good on other people (neutrality). It seems that liberals need to drop either belief if they want to prevent non-therapeutic body modifications. The history of mankind is full of examples of bodily mutilation inflicted for ritual, or other cultural, reasons. It could even be argued that the very transgression of given bodily appearance is an instance of exclusive human freedom.4 Animals do not mutilate themselves for reasons other than saving their lives. Accordingly, tattoos and ear piercings are agreed to almost universally, and so too are more severe interventions into bodily integrity, like circumcision, accepted hi 3

Since I am dealing mainly with non-therapeutic mutilations, I will not discuss the related example of Body Integrity Identity Disorder, which might justify the amputation of healthy limbs on grounds of an alienation of patients from these body parts (I. Bayne & N. Levy. Amputees By Choice: Body Integrity Identity Disorder and the Ethics of Amputation. JAppl Philos 2005; 22:75-85). Although I see a relation of these cases to voluntary mutilation, I take the mentioned interventions to be therapeutic, because they aim at treating a peculiar symptom of a mental disorder. Whether amputation of healthy limbs is justified by that motive is, of course, a different issue. 4 G. Bataille. 1992. Orig. 1954. Sovereignty. Transl. Robert Hurley. The Accused Share. Vol. 3, New York: Zone Books.

many cultures. Some body mutilations or modifications, e.g. sterilisation or sex change, have become available hi recent years through medical technology and are now also widely established and often acclaimed. More contested examples of interventions specific to cultures are body stretchings, which can be found hi many African tribes. Stretchings of the earlobes and lips to the size of a saucer, considerably elongated necks and even skull deformations are practised. And of course there is the well-known tradition of bound feet hi some East Asian countries, which had been performed at least until the 20th Century and seemingly still today hi some rural areas.5 What seems morally controversial hi these cases is the lack of informed consent, since they are often carried out on infants or little children. But since similar or the same bodily modifications are done today on adults with their consent, common disgust provoked by them needs to be based on concerns other than the absence of competence to consent. One of the most noticeable examples of mutilations which are widely condemned, on the other hand, is clitorectomy (or female genital mutilation for an evaluative expression), which is practised hi some Islamic countries. I believe that this very case illustrates that the rejection of at least some body modifications is not based on lack of consent alone but on implicit value-judgements, which supposedly serve to set limits on legitimate alterations of bodily appearance.6 However, it seems that value-judgements regarding interventions into bodily integrity, even the usage of terms like 'mutilation' versus the more neutral 'body modification', are based on nothing more than cultural and probably religious preferences. There seems to be no noticeable qualitative difference between, say, tattoos and aesthetic branding, and there is also no noticeable discrepancy hi terms of the inflicted pain or health risk involved. 5

S.R. Cummings & K. Stone. Consequences of foot binding among older women in Beijing, China. Am J Public Health 1997; 87: 16771679. 6 The practice is illegal in Britain under the Prohibition of Female Circumcision Bill from 1985, even if performed on competent adults, cf. S. Sheldon & S. Wilkinson. Female Genital Mutilation and Cosmetic Surgery: Regulating Non-Therapeutic Body Modification. Bioethics 1998; 12: pp. 263-285.

The Right to Bodily Integrity

10

421

Thomas Schramme

What many regard today as a repellent mutilation, e.g. tongue splitting, cuttings, subcutaneous implants and flesh staplings, have their precursors in piercings and other almost universally accepted modifications.71 therefore believe that the easy dismissal of the body modification community as a bunch of eccentrics or pathological cases ought to be rejected.8 They have as their forerunners several tribal cultures, hence often refer to themselves as 'modern primitives', and some avant-garde artists, e.g. the Italian Futurists, who also perceived the body as material for the accomplishment of intended aims.9 Grounds for rejecting body modifications are not as straightforward as many people would like to think. There are five possible arguments against voluntary mutilation which I will discuss, though not all of them in detail: i) Self-mutilation is never really voluntary, but is caused by pathological beliefs and desires, or is a side-effect of mental disorder; ii) it violates moral duties to oneself; iii) it violates moral duties to others or harms other people; iv) it contravenes nature's purposes; v) it is unreasonable or irrational.10 7 F. Musafar. 1996. Body-Play: State of Grace or Sickness? In Bodies Under Siege: Self-Mutilation and Body Modification in Culture and Psychiatry. Second Edition. A.R. Favazza. Baltimore: Johns Hopkins U.P.: 325-334. Examples of these practises can be seen on the website of the Body Modification Ezine: http://www.bmezine.com [Accessed: 21 March 2006]. 8 I am aware of only one serious scientific article on body modification, which does not set it in a psychiatric context from the outset: M. Benecke. First Report of Nonpsychotic Self-Cannibalism (Autophagy), Tongue Splitting, and Scar Patterns (Scarification) as an Extreme Form of Cultural Body Modification in a Western Civilization. Am J Forensic MedPathol 1999; 200: 281-285. 9 'We believe in the possibility of an incalculable number of human transformations, and without a smile we declare that wings are asleep in the flesh of man.' F.T. Marinetti. 1991. Orig. 1911. Multiplied Man and the Reign of the Machine. In Let's Murder the Moonshine: Selected Writings by F. T. Marinetti. R.W. Flint, ed. Los Angeles: Sun and Moon Press: 90-93. Another famous slogan of the Italian Futurists reminds of Julien Offray de La Mettrie's study Machine Man (Cambridge: Cambridge U.P. 1996. Orig. 1747): 'We feel mechanically. We feel made of steel. We too are machines, we too are mechanized!' E. Prampolini, I. Pannaggi & V. Paladini. Mechanical Art: Futurist Manifesto (1922). Available at: http://www.futurism.org.uk/manifestos/manifesto57.htm [Accessed 31 March 2006]. 10 Apart from the bill on Female Genital Mutilation, I was not able to track down any legal regulations concerning extreme voluntary body modifications. Since so far most cases only concern minor interventions like piercing and tattooing, there still seems to be no need for regulation, besides already regulated issues of safety, hygiene, and consent. In

1.

PATHOLOGISATION

There is a lot of material on self-mutilation in the psychiatric literature. For example, self-cutting is identified as a common symptom in Borderline Personality Disorder. Self-mutilation is therefore usually regarded as a symptom or side-effect of pathological processes. But these psychiatric cases are not relevant to my concerns in this article, since they are clearly instances of non-voluntary or compulsive behaviour. It seems straightforward that many cases of self-mutilation can indeed be perceived as a 'morbid form of self help',11 but it seems less obvious that all the examples I gave in the introduction can be pathologised in the same way.12 If it would indeed be possible to show that every single instance of self-mutilation is caused by mental disorder, then we could deny the very reality of the phenomenon I am talking about. Voluntary, nontherapeutic mutilation then would not exist, it would be a contradiction in terms. In order to reject this argumentation I would need to thoroughly scrutinise the criteria of voluntariness. I will not have the space to do so, but I want to stress that voluntary action and decision is usually established by the formal characteristics of lack of internal and external coercion or foreign control and not by the substance of the action or decision. Hence the process of decision-making and not the content of the decision itself is responsible for establishing its voluntariness. Therefore, there is no general reason to support the 'disorder' claim, but plenty of specific cases which, on investigation, at least seem to be

Britain, and other countries, the common clause of 'grievous or actual bodily harm' may apply in some cases, because it even rules out interventions which are done by consent. Germany has a peculiar paragraph in its penal law (§228) that prohibits acts that 'offend good morals' (wider die guten Sitten), i.e. are contra bonos mores. This paragraph also applies to consentient acts. The state of Illinois planned to ban tongue splitting unless performed for therapeutic or clinical reasons. This clause was dropped and the only proviso now is that a person from the medical profession performs the act. Available at: http://ilga.gov/ legislation/publicacts/fulltext.asp?Name=093-0449. [Accessed 30 March 2006]. 11 Favazza, op. cit. note 7; p. xix. 12 V.L. Pitts. Body Modification, Self-Mutilation and Agency in Media Accounts of Subculture. Body and Society, 1999; 5: 291-303; V.L. Pitts. 2003. In the Flesh: The Cultural Politics of Body Modification, New York: Palgrave: 23ff.

422

The Right to Bodily Integrity Non-Therapeutic Mutilation and Extreme Body Modification

obvious examples of voluntary mutilation, be they comprehensible and acceptable or not.13 One might object that the choice of selfmutilation cannot be regarded as voluntary, even under the formal approach, because social determinants coercively contribute to the will-formation of the possible self-maimers. Like anorectic adolescents, who seem to be strongly influenced by aesthetic ideals of their community, people contemplating body modifications may be manipulated by social pressure. But, firstly, all individual choices have a social aspect in being influenced by other people. It would need to be established when a social determinant becomes a normatively problematic case of manipulation or coercion. I do not see that this can be easily shown for the cases I am dealing with. Secondly, people who perform these body modifications hardly follow common social aesthetic ideals. On the contrary, they are still very often disrespected for their very appearance. So selfmutilation cannot be rejected for its alleged pathological or involuntary nature. More positively, it can even be argued that the choice of body modifications coheres with the Western ideal of developing personality. One of the movement's main spokespersons, Erik Sprague, known as 'The Lizardman', says: 'Embrace your individuality: The unexamined life is not worth living because it is at best a pale imitation of life. So, examine your life. Devote time and consideration to your motivations, decisions, and goals. Take hard looks at them all. Actively engage in the process of self-definition. Make a concerted effort in all things to assert and express yourself as an individual rather than as a category or role.'14 Since the body is an essential part of the self, it does seem to fit into the ideal of self-development according to individual projects and life-plans. So why not shape the body according to individual tastes? Having rejected the outright pathologisation of self-mutilation, I want to use the rest of the paper to inspect philosophical arguments which may be relevant for the evaluation of voluntary mutilation. Three important considerations are: duties to 13

J. Feinberg. 1986. Harm to Self, Oxford: Oxford U.P.: 124ff. 14 E. Sprague. Self-Definition and Body Modification & Ritual. Available at: http://www.bmezine.com/news/lizardman/20031113.html [Accessed 31 March 2006].

11

oneself (section 2), the value of autonomy vs. possible offence to others (section 3), and the concept of well-being and harm (section 4). I will conclude that none of these provides a firm justificatory basis for a rejection of voluntary body modifications.

2. DUTIES TO ONESELF In the Metaphysics of Morals, Immanuel Kant attempts to justify duties to oneself.15 Interestingly, he explicitly mentions self-maiming as an example of a violation of this special kind of duty. If his argument succeeded we would indeed have a strong case for the rejection of many voluntary mutilations. But I contend that the notion of a duty to oneself is a non-starter, since the rights and duties are assembled in one and the same person. It seems obvious that a person (in the role of a rights-holder) could release himself from carrying out the duty. If so, there can be no binding of the individual will by the specific duty whatsoever. Therefore, the idea of self-regarding duties seems vacuous.16 It is to Kant's credit that he is aware of this problem and that he begins his analysis with an attempt to explain away the seeming contradiction. On one occasion he refers to the familiar rule volenti nonfit iniuria, which translates: no one is wronged willingly.17 It is clearly an injustice to violate a duty, but if someone releases another person from acting according to a duty by consenting to the act which would violate the duty, then, according to the mentioned principle, no injustice is done. In the case of a self-regarding act or omission, the consent of the person affected has to be presumed by definition, because the subject and the object of the duty are one and the same person - hence the seeming antinomy in the idea of duties to oneself. Kant solves the philosophical problem by splitting the personal union of human beings. He introduces two conceptions of man, the rational being (homo noumenon) and the natural being (homo 15 I. Kant. 1996. Orig. 1797. Practical Philosophy. The Cambridge Edition of the Works of Immanuel Kant. M.J. Gregor, transl. and ed. Cambridge: Cambridge U.P.: 543ff. [6:417ff.]. (Page numbers in square brackets refer to the pagination of the standard German Edition). 16 M.G. Singer. On Duties to Oneself, Ethics 1959; 69: 202-205. 17 Kant, op. cit., note 15, p. 547 [6:422].

The Right to Bodily Integrity

12

423

Thomas Schramme

phenomenon). According to him, there is no contradiction in duties to oneself, because a person as rational being binds the will of himself as a natural being. Although this solution looks rather obscure, I believe that Kant need not rely on this argument alone, because he could also maintain that on his account it is not (morally) permissible to release oneself (or another person) from the duty not to debase humanity.18 So there might be specific duties, stemming from our respect for moral personhood, which cannot be waived; hence the idea of duties to oneself would make sense after all. But why is self-mutilation an instance of a violation of self-regarding duty? Self-maiming, according to Kant, contravenes self-preservation, which is a necessary condition of morality itself. Just as suicide is a (moral) crime, 'partial suicide', i.e. selfmutilation, is also morally wrong. A human being cannot renounce his personality as long as he is a subject of duty, hence as long as he lives; and it is a contradiction that he should be authorized to withdraw from all obligation, that is, freely to act as if no authorization were needed for this action. To annihilate the subject of morality in one's own person is to root out the existence of morality itself from the world, as far as one can, even though morality is an end in itself. Consequently, disposing of oneself as a mere means to some discretionary end is debasing humanity in one's person (homo noumenori), to which the human being (homo phenomenon) was nevertheless entrusted for preservation. To deprive oneself of an integral part or organ (to maim oneself) - for example, to give away or sell a tooth to be transplanted into another's mouth, or to have oneself castrated in order to get an easier livelihood as a singer, and so forth - are ways of partially murdering oneself.19 18 A. Reath. 2002. Self-Legislation and Duties to Oneself. In: Kant's Metaphysics of Morals: Interpretative Essays. M. Timmons, ed. Oxford: Clarendon Press: 356. 19 Kant, op. cit. note 15, p. 547 [6:422f.]. The formulation that a person, in committing suicide, is using himself as a mere means, is in line with the respective claim in the Groundwork (Kant, orig. 1785, op. cit. note 15, p. 80, [4:429]). I refer to the Metaphysics of Morals, because his account of self-regarding duties in this later text is more detailed and because I fail to make sense of the idea that someone - while doing something self-regarding - may fail to treat himself (also) as an end.

Even if we accepted Kant's dubious argumentation against suicide, his approach would still not suffice to morally condemn voluntary selfmutilation. After all, by mutilating oneself the conditions for the ability to act morally are neither threatened nor removed. Kant's own example of tooth-explantation makes this far too obvious. The reference to "partial suicide" does not help either, because we have to acknowledge a categorical, not merely gradual, distinction between self-mutilation and suicide.20 Alternatively Kant interprets self-mutilation as a threat to the purposes of human nature.21 For there to be a categorical imperative at all, there must be, according to Kant, ends which are themselves duties.22 The relevant (i.e. self-regarding) end, which is itself a duty, is self-perfection or the overcoming of human animality.23 Self-perfection is explained in terms of abilities relevant for morality (e.g. understanding, the good will). Having the ability to acting morally, again, means to be able to set one's own rational goals. The capacity to set oneself an end - any end whatsoever - is what characterizes humanity (as distinguished from animality). Hence there is also bound up with the end of humanity in our own person the rational will, and so the duty, to make ourselves worthy of humanity by culture in 20

Denis (L. Denis. 2001. Moral Self-Regard: Duties to Oneself in Kant's Moral Theory. New York/London: Garland: 101) explains Kant's analogy between killing oneself and self-maiming by his premise that he 'considers the person to be a whole composed of physical and rational aspects'. But that does not make Kant's claim more agreeable, since the self-maimer is still a whole person after performing the act. 21 The reference to human nature ought not to be interpreted in a biological way. 22 Kant, op. cit. note 15, p. 516ff. [6:384ff.] 23 Kant seems to draw two distinctions which make the same point in analogous fashion: Firstly, he differentiates between negative worsening, or even removal, of the ability to morally self-improve, which is a violation of a perfect, negative duty to oneself, and the further enhancing of one's own moral abilities, which is an imperfect, positive duty to oneself (Ibid: p. 544f. [6:418f.] and p. 566f. [6:446f.]; Denis, op. cit. note 20, p. 110, also mentions Kant's notions of 'moral health' and 'moral prosperity' as objects of the respective duties). He secondly distinguishes between perfection in a quantitative (material) and a qualitative (formal) sense. I take it that the duty to perfection in the qualitative sense implies the non-neglect (negative) of specific capacities which are necessary for a certain end, i.e. becoming a moral person (see esp. Kant, op. cit. note 15, p. 517f. [6:386f.]). Kant explicitly says that moral perfection is - in terms of the qualitative interpretation - a perfect duty, but - in terms of its degree (i.e. quantitatively) - an imperfect one (Ibid: p. 241 [6:446]).

424

The Right to Bodily Integrity Non-Therapeutic Mutilation and Extreme Body Modification

general, by procuring or promoting the capacity to realize all sorts of possible ends, so far as this is to be found in man himself. In other words, the human being has a duty to cultivate the crude predispositions of his nature, by which the animal is first raised into the human being. It is therefore a duty in itself.24 To be sure, this argument leaves open whether every form of self-mutilation threatens selfperfection and, if not, which do. Nevertheless, it may be argued in a Kantian spirit that every selfmutilation involves an impairment of bodily functional abilities, and that this equals a violation of duty, because, according to Kant, it is a selfregarding moral duty to obtain, preserve and possibly enhance these abilities. I believe that even this putative reasoning applies to only a few cases of self-mutilation. Undeniably, Kant could claim that every mutilation entails a comparative deterioration of individual abilities to act, because bodily functional abilities are impaired or even removed. But it is not straightforward why a comparative restriction of abilities causes moral problems, as long as the ability to act morally is preserved in principle. Is there a duty to act (morally) as efficiently as possible? I believe that in order to answer this question in the affirmative one would need further premises, e.g. a different perfectionist approach to human capacities such as Aristotle's teleological ergon-argument.25 But Kant's theory does not contain any premises of this sort; his claim that self-perfection is a duty (i.e. not merely something which is good for us), is nothing more than an unfounded assertion. Even if we ignore the gradual problem - why is self-perfection a duty? - there is a further, qualitative problem: What are the abilities we need in order to act morally? Whatever they are, obviously not all of them are impaired by acts of self-mutilation. For example, it does not seem likely that someone weakens his or her moral capacities by ripping out a tooth or even by amputating a breast. 24

Ibid: p. 522f. [6:392]. Aristotle. 2000. Nicomachean Ethics. R. Crisp, transl. and ed. Cambridge: Cambridge U.P. 25

13

Last but not least there is a possible objection to Kant's condemnation of self-mutilation, which accepts his own premises. Kant is lead by the belief that our specific human abilities generate autonomy of the will and hence the ability to give oneself a law upon which to act. The duty of selfperfection also has its foundation in this very characteristic. But the modification of our given body, the transgression of its natural limits, might be interpreted as the best accomplishment of human freedom. As I have stressed before, what is regarded by some as mutilation, others see as a perfection of their physical appearance. According to this line of argumentation, the manipulation of one's own bodily constitution is part of selfperfection. Kant's example of the castrato appears in a different light. He manifests the highest possible achievement of human ability to sing. Therefore, not every instance of voluntary mutilation need be seen as a violation of duties to oneself, even on Kant's own account. It is possible that many readers will object to my careless identification of Kant's conception of autonomy with plain, unqualified selfdetermination. After all, his argument does not aim primarily at possible impairments of bodily abilities but at the renunciation of our own nature as moral beings in the case of - what he likes to call - partial self-murder. According to Kant, such a purpose cannot be chosen autonomously. But this defence is futile. It merely paraphrases his dubious assertions. Kant's supposition that voluntary mutilation violates our autonomy and debases our moral personhood simply begs the question. 3. THE HARM PRINCIPLE There is another idea contravening the plausibility of preventing non-therapeutic mutilations, an idea that is widely accepted in liberal societies: the harm principle, most clearly stated by John Stuart Mill, which holds that only actions which harm or threaten to harm other people may be coercively prevented. If no other person is affected, we may not infringe liberty, though we may criticize a person for his behaviour. Hence the claimed individual liberty spans over almost the whole area of

The Right to Bodily Integrity

14

Thomas Schramme

personal affairs. Nobody may be coerced into acting for his (alleged) own good. Mill explicitly holds that a person is sovereign over his own mind and body.26 Mill is mainly interested in legal issues. He restricts the sphere of possible legal interventions to acts which affect others. On this thesis we could argue that, because self-mutilation and body modifications merely affect the person in question, they are legally permitted.27 If interventions into bodily integrity are done by other people, they are allowed if they are done on grounds of the voluntary consent of the affected person.28 To be sure, Mill does allow for critique of seemingly offensive behaviour, hence we should not view the private sphere as completely removed from any social influences on his account.29 He might even be read in a way that allows for the moral (in contrast to legal) condemnation of self-regarding acts. However, we have already seen the problems of regarding self-mutilations as immoral acts. It is surely difficult to square the idea of self-regarding acts as part of morality with the modern idea of morality as a system of solving interpersonal 26

425

'One very simple principle, as entitled to govern absolutely the dealings of society with the individual in the way of compulsion and control, whether the means used be physical force in the form of legal penalties, or the moral coercion of public opinion. That principle is, that the sole end for which mankind are warranted, individually or collectively, in interfering with the liberty of action of any of their number is [...] to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. He cannot rightfully be compelled to do or forbear because it will be better for him to do so, because it will make him happier, because, in the opinions of others, to do so would be wise or even right. [...] Over himself, over his own body and mind, the individual is sovereign.' (J.S. Mill. 1998. Orig. 1859. On Liberty and Other Essays. Oxford World's Classics. John Gray, ed. Oxford: Oxford U.P.: p. 13f). Mill explicitly refers to the concept of duties to oneself on p. 87. 27 One might argue that other people may be shocked by seeing people with severe body-mutilations, hence are harmed. I agree that Mill's theory is not specific enough on cases like these, but I would like to mention two rejoinders anyway: Firstly, squeamishness is not a good basis for prohibitions. People also used to be shocked by gay people kissing in public. Secondly, there are people with severe disfigurations which also shock others by their mere physical appearance. Should they consequently be excluded from appearance in public? 28 Mill extensively deals with the common objection that every act might affect other people by giving a bad example. To my mind, he rejects it convincingly, Ibid: p. 88ff. 29 'Human beings owe to each other the help to distinguish the better from the worse, and encouragement to choose the former and avoid the latter.' Mill, op. cit. note 26, p. 84.

conflicts of interest. Consequently Mill, for one, objects to moralisation and eventual legal prohibition of acts which only affect a person's own sphere. Since everyone is pursuing their own good life, a person is entitled to find out for themselves what they regard as good for them. Whoever is able to make their own judgements on these matters30 may not be stopped, even if their chosen course of action ends in mishap. Nevertheless, we might look for support of this argument against severe body modifications in Mill's own account, which is generally antipaternalistic, but still seems to allow for interventions in cases where someone acts against his own very basic self-interest.31 One example to be discussed here is voluntary enslavement, which Mill explicitly disapproves of.32 Similar to Kant, he seems to use a transcendental argument at this point. According to Mill, it would be contradictory to apply a principle, which ought to secure individual freedom as far as possible, in a way which undermines the very conditions of making use of individual freedom. Consequently, one might try to make a case for interpreting specific forms of body modification as impairments of the very basis for self-determination, and therefore as acts which ought to be rejected.33 I will scrutinise a variation of this argument in the next section. We can conclude from the discussion of Kant's and Mill's theories that, although there are no grounds for moral disapproval of voluntary mutilation, there is still room for objections. After all, maiming oneself quite likely implies a serious impairment of individual health. So instead of counting on morals, objections should better relate to the self-interest of the self-mutilator. It seems plainly irrational to maim yourself voluntarily or let someone else mutilate you. 30

This does not apply to children and mentally impaired people, according to Mill. 31 D. Lyons. 1994. Rights, Welfare, and Mill's Moral Theory. Oxford: Oxford U.P.: p. 132ff. 32 Mill, op. cit. note 26, p. 113ff. 33 The 'basis' referred to here is the material precondition of selfdetermination, namely a functioning body. It is not enough to reject this argument by referring to body modification as expression of one's own freedom.

426

The Right to Bodily Integrity Non-Therapeutic Mutilation and Extreme Body Modification

4. SELF-INTEREST It is hard to deny that many cases of mutilation and other body modifications impair bodily functional ability. Almost all of these interventions cause pathological conditions, e.g. destroyed skin tissue. Since health is a precondition of the pursuit of our projects and goals it is an important prudential value. Therefore, we might reject mutilations, even where they are done voluntarily, for reasons of their irrationality.34 Hard-nosed anti-paternalists would not be impressed by this move, of course, because they do not take irrationality to be a sufficient criterion for paternalistic intervention. Unreasonable actions might, after all, be voluntarily chosen. However, people who are less committed on this issue might want to act paternalistically in these extreme cases. In order to justify their intervention they would have to show that self-mutilation is indeed an instance of harm, severe enough to justify its prevention. Surprisingly, this is not as easy to establish as expected. The argument relies on the presuppositions that, firstly, severe body modifications can be defined as pathological conditions and, secondly, that they are necessarily bad for a person. While the first might be more or less straightforward, the second needs more treatment. If a person mutilating herself disagrees with the judgement that she is harmed by this very act, then - on this account - she has to be wrong about her own well-being. We might want to say that, at least in this respect, human well-being is objectively defined by a norm of health, which again is defined by normal functional ability. What is good 34 B. Gert, C.M. Culver & K.D. Clouser. 1997. Bioethics. A Return to Fundamentals, Oxford: Oxford U.P.: p. 26ff. and 93ff. The term prudential value stems from James Griffin (J. Griffin. 1986. Weil-Being: Its Meaning, Measurement, and Moral Importance. Oxford: Clarendon Press).

15

for us, as regards bodily health, does not seem to depend on whether we subjectively regard it as good. Many mutilations indeed worsen certain abilities like mobility. But it seems to me that the existence of a comparative disadvantage is not sufficient to justify an intervention. We do, of course, in many cases accept the worsening of abilities for idiosyncratic reasons, without even considering to prevent it. Consider for example the common unhealthy lifestyles which result in even graver impairments of motility than common mutilations. In addition, bodily health is only one aspect of our well-being and probably not even the most important one. If people voluntarily choose to mutilate their flesh, we better assume that they take it to be in their interest. I therefore believe that voluntary mutilation should be regarded non-pejoratively and labelled 'body modification'. 5. CONCLUSION I have discussed several arguments against voluntary body modifications. Not all people who voluntarily opt for these interventions can be regarded as suffering from mental disorders. Voluntary body modifications do not violate self-regarding duties and they do not amount to instances of harm severe enough to justify interventions.35 As long as there are no other, better, arguments available which may lead us to a different assessment, I conclude that severe body modifications ought to be permitted.36 35 It is maybe worth stressing again that I do not argue in favour of public funding for these interventions, so there is no problem of unreasonable claims on resources involved. What is more, body modifications do not raise the issue of possible long-term unfairness, which is often seen in relation to other privately funded treatments, e.g. enhancements, since the interventions I discussed hardly bring about any individual advantages. 36 I should like to thank Steve Edwards, Hugh Upton, and the anonymous reviewers for valuable suggestions and comments.

[17] BODY DYSMORPHIC DISORDER, RADICAL SURGERY AND THE LIMITS OF CONSENT TRACEY ELLIOTT*

Queen Mary University of London

I. INTRODUCTION For most people, the idea that anyone would wish to have a perfectly healthy leg amputated must seem bizarre. Such people exist. In 2000 there was a media furore, when it was disclosed that a Scottish surgeon had operated upon two adult male patients reportedly suffering from a rare form of a psychological condition known as body dysmorphic disorder (BDD), in each case amputating a healthy leg. Since then, the question of whether such surgery is ethically or legally permissible has been a matter of debate. The subject raises issues as to the extent to which it is proper to treat adults with psychiatric or psychological disorders with radical surgery, particularly where the appropriate diagnosis and treatment of the underlying disorder is uncertain or disputed; the limitations which ought to be placed upon consent as a means of rendering surgery lawful and whether the criminal law ought to have a place in controlling operations provided by qualified surgeons upon competent adults with their consent.

II. BODY DYSMORPHIC DISORDER A. What Is BDD? Generally, BDD is a recognized mental disorder which has a number of features.1 The main feature of the condition is a preoccupation with a * Lecturer, Queen Mary University of London. I am grateful to Professors Emily Jackson, Peter Alldridge, David Ormerod and the anonymous reviewers for their constructive comments upon earlier drafts of this article. Errors and omissions that remain are mine. 1 This description of BDD is based upon the diagnostic criteria set out in: American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders (4th edn, text revision Arlington, 2000) ('DSM-IV-TR') 507-10. BDD is classified as a Somatoform Disorder, in which:'... the presence of physical symptoms... suggest a general medical condition... not fully explained by a general medical condition, by the direct effects of a substance, or by another mental disorder', at 485. The DSM-IV-TR is a manual that provides the standard classification of mental disorders used by mental health professionals in the USA: http://

428

The Right to Bodily Integrity

150

MEDICAL LAW REVIEW

[2009]

defect in appearance. This defect may be imagined, for example, a person may imagine that some part of their body is ugly, flawed or deformed and such imagined beliefs may range from an imagined belief that one's hair is thinning to a belief that one has one too many limbs.2 Alternatively, a slight physical abnormality may be present and the sufferer's concern about this becomes markedly excessive. This preoccupation may be about a minor 'defect' such as a spot, mark or prominent vein, or it may be about the size or shape of any part or parts of the body, for example, the nose, breasts or overall musculature.3 This preoccupation can be extremely distressing for the sufferer, and individuals with BDD have described their feelings about their actual or imagined deformity as being 'intensely painful', or 'devastating'.4 It may also have an enormous impact upon the individual's life, leading to frequent and obsessive checking of the 'defect' in mirrors or other reflective surfaces, sometimes for hours everyday.5 Sufferers may try to conceal their actual or perceived imperfections by excessive or ritualized grooming,6 or may even try to modify their bodies to remove the defect,7 in extreme cases by self-surgery, which can have disastrous results.8 Obviously, such behaviour can be extremely time-consuming and have a tremendous impact upon the sufferer's work, family and social life. In severe cases the disorder may even lead to an individual becoming very isolated, dropping out of school or work, severing or avoiding relationships, or going to great lengths to avoid human contact entirely. Many BDD sufferers are very depressed, which may lead to admission to hospital for treatment or the individual may attempt or commit suicide.9

2 3

4

5 6 7

8

9

www.dsmivtr.org/ (accessed June 4 2008). It is extensively used in psychiatric practice.

KA Phillips, The Broken Mirror: Understanding and Treating Body Dysmorphic Disorder (Oxford University Press 1986) 33. KA Phillips, 'Clinical Features and Treatment of Body Dysmorphic Disorder' (2005) III Focus 179, at 180; D Veale, 'Body Dysmorphic Disorder' (2004) 80 Postgraduate Medicine 67, at 67. See e.g. Phillips, above n 2, at 81, 202. Ibid. Phillips, above n 2, at 106, has estimated that approximately one-third of people with BDD groom excessively. Sometimes this may lead to severe disfigurement or injury: e.g. Phillips refers to one case in which a BDD sufferer picked their skin so much that they severely damaged their facial artery, which led to substantial blood loss and emergency surgery: ibid, at 146. See e.g. trie case reported bv Phillips, ibid, of a person: '... so desperate to improve the appearance of his nose that he did his own surgery, cutting his nose open ana attempting to replace his own cartilage with chicken cartilage'. C.f. D Veale, 'Outcome of Cosmetic Surgery and 'DIY' Surgery in Patients with Body Dysmorphic Disorder' (2000) 24 Psychiatric Bulletin 218, at 221. About a quarter of the BDD patients seen by Phillips had made a suicide attempt and the majority of these attributed at least one of their attempts wholly/mainly to BDD: Phillips ibid, at 151. A subsequent study by Phillips

The Right to Bodily Integrity

Med.L.Rev. BDD, Radical Surgery and the Limits of Consent 151 Medical or surgical treatment may help the condition, but it may only provide short-term relief, with the patient either re-focusing concerns upon the perceived defect, sometimes with increased intensity perhaps, or becoming preoccupied with a new feature of their body.10 According to approved diagnostic criteria,11 a diagnosis of BDD is only to be made where the patient's preoccupation with their body cannot be better accounted for by another mental disorder, for example, anorexia nervosa. It is not known precisely how common BDD is within the general community, but preliminary data suggest that BDD may affect 1-2% of the general population to a greater or lesser extent.12 In the context of cosmetic surgery and dermatological treatment settings, rates of BDD have been reported as from 6 to 15%.13 B. Dysmorphic People and the Amputation of Healthy Limbs: The Scottish Cases Body dysmorphic disorder as a condition is nothing new. Phillips has reported finding descriptions of what she regards as cases of BDD that are over a century old, and has even suggested that Freud's famous patient, The Wolf Man',14 was probably a BDD sufferer.15 However, in 2000 public and media attention was focused upon the condition when it was revealed that two operations to amputate healthy limbs had taken place in Scotland. Both operations had been conducted at the Falkirk Royal Infirmary by Robert Smith, a consultant general surgeon. In the first operation in 1997, Smith had amputated part of

10

11 12 13 14 15

and Menard concluded that BDD sufferers have high rates of suicide idealation and attempts: KA Phillips and W Menard, 'Suicidality in Body Dysmorphic Disorder: A Prospective Study' (2006) 163 American Journal of Psychiatry 1280. Phillips suggests that two-thirds of BDD patients who had surgery or (nonpsychiatric) medical treatment reported that their condition was unchanged or had deteriorated: above n 2, at 288. DSM-IV-TR, above n 1, at 510. Phillips, above n 2, at 21; above n 3 at 180. DSM-IV-TR, above n 1, at 509. Sergei Pankejeff. Discussed in S Freud The Case of the Wolf-man: From the History of an Infantile Neurosis (Arian Press 1993). Phillips, above n 2, at 19. The same may be said of healthy limb amputations: C.f. J Johnston and C Elliott, 'Healthy Limb Amputation: Ethical and Legal Aspects' (2002) 2 Clinical Medicine 431, at 431: who refer to a case (described by Sue in 1785) of an Englishman who offered a French surgeon 100 guineas to amputate his healthy leg. When the surgeon declined, the Englishman forced him to conduct the amputation at gunpoint. Subsequently the surgeon received payment for the operation of 250 guineas, together with a letter in which the former patient stated: 'You have made me the happiest of all men, by taking away from me a limb which put an invincible obstacle to my happiness'.

429

430

The Right to Bodily Integrity

152

MEDICAL LAW REVIEW

[2009]

the left leg of a 39-year-old English man16, who had wished to have his leg amputated since he was 8 because he did not feel it like a part of him, felt unable to bear life with his left leg whole and intact, and who had contemplated suicide.17 This was followed by a further amputation in 1999 upon a 71-year-old patient from Germany, who had felt that he was 'in the wrong body and... should have a leg amputated'18 since the age of 14. Both patients had previously unsuccessfully sought amputation surgery at other hospitals in Europe. Both were reportedly very pleased with the outcome of their operations.19 Robert Smith himself described the surgery as: '... the most satisfying operation I have ever performed'.20 Following these two operations, Smith received further requests for healthy limb amputation and had six people waiting for surgery, including an American woman whose desire was to have both of her legs amputated above the knee, and Dr Gregg Furth, a Jungian psychoanalyst from New York, who had wanted to have an above knee amputation on his right leg for many years21 and who had been approved for such surgery by psychiatrists and Smith.22 However, in early 2000, the Forth Valley Acute Hospitals NHS Trust, which had taken over control of the Falkirk and District Royal Infirmary, refused permission for the operation to take place at the hospital.23 A subsequent application by Smith to conduct an amputation at a private hospital in Stirling was also refused, partly because of the widespread public concern about such surgery. 24 Robert Smith remains one of a very few surgeons in the world who are willing to conduct healthy limb amputations, but he has been effectively barred from conducting such operations in the 16

See e.g. P Taylor, 'My Left Foot Was not Part of Me' The Observer 6 February 2000, at 14; K Scott, 'Voluntary Amputee Ran Disability Site' The Guardian 7 February 2000; S. English, 'Amputee Surgeon "Was not Duped'" The Times 7 February 2000. 17 Taylor, ibid. 18 BBC, 'Horizon: Complete Obsession' 17 February 2000, Programme transcript available at http://wwwbbc.co.uk/science/horizon/1999/obsession_script.shtml accessed 9 July 2006; c.f. Taylor, above n 17, and Melody Gilbert's documentary, 'Whole', (2003). 19 G Seenan, 'Healthy Limbs Cut Off at Patients' Request' The Times 1 February 2000, p. 9. Mr Smith waived his fee for the operations, but the hospital was paid £1,400 for the first operation and £6,600 for the second: Taylor, above n 16. 20 G Harris, 'Surgeon Content at Removal of Healthy Leg' The Times 21 1 February 2000. Dr Furth had previously seriously contemplated resorting to illegal surgery: see People v Brown (2001) 91 Cal App 4th 256. 22 BBC, above n 18. 23 BBC News, 'Trust Bans 'Private' Amputations' 1 February 2000: http:// news.bbc.co.uk/l/hi/scotland/627183.stm accessed 27 February 2006. 24 S English, 'Hospital Blocks Limb Surgeon' The Times 26 August 2000.

The Right to Bodily Integrity

Med.L.Rev. BDD, Radical Surgery and the Limits of Consent 153 UK, because no hospital will permit the surgery to take place on their premises.25 C. Problems of Diagnosis: BDD or Something Else? The topic of healthy limb amputation is fraught with diagnostic, ethical and legal difficulties. I began by discussing the features of BDD, and when the story about the Scottish amputations first attracted media attention, media (including the medical press)26 discussion of the condition suffered by Mr Smith's patients was based upon the assumption that they were suffering from a rare and extreme form of BDD.27 In interviews in early 2000, Robert Smith described the men as suffering from apotemnophilia, a rare psychological condition related to BDD.28 However, since then questions have been raised as to whether BDD is the most appropriate diagnosis and, if it is not, what the recognised diagnosis for this condition ought to be. The term apotemnophilia, Greek for 'amputation love',29 was first used in medical literature in 1977 by John Money30. The suffix 'philia' is of great significance here, as it locates the condition within a group of mental disorders known as 'paraphilias', in which there is a strong sexual urge behind the desire or behaviour: The essential features of a Paraphilia are recurrent, intense sexually arousing fantasies, sexual urges, or behaviors ... the diagnosis is made if the behaviour, sexual urges or fantasies cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.31 Certainly some ampotemnophiles desire to become an amputee for sexual reasons,32 although it is difficult to assess how prevalent this 25

26

27

28 29 30 31 32

C Fracassini, 'Call for NHS Amputations of Healthy Limbs' Sunday Times 23 November 2003; R Henig, 'At War with Their Bodies, They Seek to Sever Limbs' New York Times 22 March 2005. C Dyer, 'Surgeon Amputated Healthy Limbs' (2000) 320 British Medical Journal 332; S Ramsay, 'Controversy Over UK Surgeon Who Amputated Healthy Limbs' (2000) 355 The Lancet 332. See e.g. BBC Horizon, above n 18; Taylor, above n 17; S McGinty and S Leonard, 'Secret World of Would-Be Amputees' Sunday Times 6 February 2000; T Stuttaford, 'A Craving for Change Can Be Obsessive' 3 February 2000 The Times. Harris, above n 20. MB First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis or a New Type of Identity Disorder' (2005) 35 Psychological Medicine 919, at 920. J Money, R Jobaris and G Furth, 'Apotemnophilia: Two Cases of Self Demand Amputation as a Paraphilia' (1977) 13 Journal of Sex Research 115. DSM-IV-TR, above n 1, at 566. See e.g. TN Wise and RC Kalyanam, 'Amputee Fetishism and Genital Mutilation: Case Report and Literature Review' (2000) 26 Journal of Sex & Marital Therapy 339.

431

432

The Right to Bodily Integrity

154

MEDICAL LAW REVIEW

[2009]

fetishism is. From personal experience and the limited medical literature upon the topic, one might have concluded that the disorder is rare. However, internet searches upon the topic reveal something of a community built around the subject of amputee fetishism, ranging from information websites,33 to chat rooms,34 to sites where pornography relating to amputees is readily available.35 This community has even developed its own terms to categorise interested parties: 'DPWs' or 'devotees', 'pretenders' and 'wannabes'. 'Devotees' are non-disabled people who have a special interest in and/or are sexually attracted to amputees.36 'Pretenders' are non-disabled people who act as if they are disabled by using devices such as wheelchairs and crutches, so that they 'feel' disabled and, if such behaviour is conducted in public, so that others will see them as being disabled.37 'Wannabes' are those who wish to become disabled, usually by becoming paraplegic or by having a limb amputated.38 Clearly it is this last group that is most relevant when one is considering the topic of healthy limb amputation. The belief that there is a link between sexual desire and the desire to become an amputee has been contested in recent years, particularly by Robert Smith and his associates, who argue that apotemnophilia is not about sexual gratification, but about a desire and need to achieve a physical body that reflects what they firmly believe to be their true identity: a body that is 'complete' with an amputation.39 Smith has 33 34

35 36

37 38

E.g. Amputee website: http://www.amputee-online.com; OverGround: http:// www.overground.be/ accessed 5 June 2008. C.f. RL Bruno, 'Devotees, Pretenders and Wannabes: Two Cases of Factitious Disability Disorder' (1997) 13 Journal of Sexuality and Disability 243; C Elliott, Better Than Well: American medicine Meets the American Dream (WW Norton 2003) 216-7. The internet discussion listserv which Elliott names: 'amputee-by-choice', appears to have moved or to have been closed down. C.f. Wise and Kalyanam, above n 32, at 342. A condition known as 'acrotomophilia': Elliott, above n 34, at 209-10. C.f. Bruno, above n 34; A Kafer, 'Amputated Desire, Resistant Desire: Female Amputees in the Devotee Community' (2000) Disability World June-July, http:^www. disabilityworld. org/June-July2000/Womens/SDS.htm accessed 14 August 2006. Bruno, above n 34.

ibid.

39 GM Furth and R Smith, Amputee Identity Disorder: Information, Questions,

Answers, and Recommendations About Self-Demand Amputation (First Books Library 2002) 71; R Dotinga, 'Out on a Limb' (2000) Salon.com, http://dir.salon.com/health/feature/2000/08/29/amputation/index.html accessed 13 October 2003. This does not mean that, in the case of individuals for whom identity is the motive for seeking amputation, there is no sexual element to their wish, since sexuality is an inherrent part of identity: 'what you are attracted to (or not attracted to) is part of who you are'. Elliott, above n 34.

The Right to Bodily Integrity

Med.L.Rev. BDD, Radical Surgery and the Limits of Consent 155 described his patients as '"need-to-bes" rather than "wannabes'".40 A recent study of individuals who had a longstanding desire for an amputation by First41 offers some support for this view: he found that although sexual desire was the primary motivation for a small minority of these individuals (15%), the main aim of the majority (63%) was 'to match their body to their identity'.42 First contests the opinion that apotemnophilia is an appropriate diagnosis for this majority and suggests that 'no DSM-IV-TR diagnosis even remotely fits'43 this group. So, how should these 'wannabes' or 'need-to-bes' be diagnosed? That is still a matter of considerable dispute. Smith and Furth have, in their book on the syndrome of self-demand healthy limb amputation, firmly concluded that the diagnosis of BDD is incorrect, upon the basis that sufferers from this syndrome, rather than seeing the limb that they wish to be amputated as being defective, 'want to rid themselves of a limb that does not belong to their body identity'.44 They see the disorder as being analogous to gender identity disorder (GID), a disorder characterised by a strong desire to be, or an insistence that one is, of the opposite sex,45 and have suggested that a more appropriate name for the syndrome would be 'body identity disorder' (BID).46 In addition, they are seeking to have this disorder officially recognised in the forthcoming DSM-V as a legitimate 40

S Leonard, 'Surgeon Makes Fresh Plea on Amputations' Sunday Times

41 28 January 2001.

Dr First, a psychiatrist at the University of Columbia, was the editor of DSM-IV-TR and is working on the next edition DSM-V. MB First, 'Desire for Amputation of a Limb: Paraphilia, Psychosis or a New Type of Identity Disorder' (2005) 35 Psychological Medicine 919, at 926. First concedes that the study sample size was small (52) and that therefore his results can only be regarded as preliminary. It should be noted that sexual arousal, even where not the primary motivation for the desire for amputation, was still a relevant factor: for 52% of the subjects sexual desire was given as a secondary reason for amputation: Ibid., at 922. 43 Ibid., at 926. 44 45 Furth and Smith, above n 39, at 5. C.f. AA Lawrence, 'Clinical and Theoretical Parallels Between Desire for Limb Amputation and Gender Identity Disorder' (2006) 35 Archives of Sexual Behavior 263. According to DSM-IV-TR the diagnostic features of GID are: (A) A strong and persistent cross-gender identification (not merely a desire for any perceived cultural advantages of being the other sex)... (B) Persistent discomfort with his or her sex or sense of inappropriateness in the gender role of that sex... (C) The disturbance is not concurrent with a physical intersex condition. (D) The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning. Above n 1, at 581. 46 Furth and Smith, above n 39, at 87. 42

433

434

The Right to Bodily Integrity

156

MEDICAL LAW REVIEW

[2009]

and separate diagnostic syndrome.47 This view of the disorder has received support, in particular from First, who has also recognised the similarity between this desire for healthy limb amputation and GID: In both conditions the individual reports feeling uncomfortable with an aspect of his or her anatomical identity (gender in GID, presence of all limbs in this condition) with an internal sense of the desired identity (to be the other sex in GID, to be an amputee in this condition).48 He provisionally suggested that the disorder be called 'body integrity identity disorder' (BUD).49 This name for the condition has since been more generally accepted by clinicians involved with the treatment of individuals seeking healthy limb amputation (including Mr Smith),50 and by such individuals themselves.51 However, this interpretation of the condition, although highly plausible, is not universally accepted. Bensler and Paauw have suggested that the condition is essentially an 'erotic fantasy' with two elements: 'undergoing amputation of a limb, and subsequently overachieving despite a 47

48 49 50

51

Furth and Smith, ibid., at 87-9. They have drafted diagnostic criteria for this disorder: (A) There must be evidence of a strong and persistent disability identification, which is the desire to be, or the insistence that one is, internally, disabled. (B) The disability identification must not merely be a desire for any perceived cultural advantages of living with a disability. There must also be evidence of persistent discomfort about living as an able-bodied person, or a sense of inappropriateness in that same role. (C) The diagnosis is not made if the condition is better explained by another medical or psychiatric diagnosis. (D) To make the diagnosis, there must be evidence of clinically significant distress or impairment in social, occupational, or other important areas of functioning. According to this definition, both criteria A and B must be present for a diagnosis of BID be made. The DSM-IV's description of GID is used as a template for these draft criteria. First, above n 42, at 926. Ibid. C.f. The BUD website: http://www.biid.org/BIID%20Basics.htm (accessed August 14 2006). See e.g. the website http://www.BIID.prg, set up by 'a group of medical, psychological and psychiatric professionals committed to increasing the knowledge about this disorder' accessed 4 March 2009; ED Sorene, C Heras-Palou and FD Burke, 'Self-amputation of a Healthy Hand: a Case of Body Integrity Identity Disorder' (2006) 31 Journal of Hand Surgery 593. See e.g. http://biid-info.org, a website 'about BUD, by people who have BUD' (accessed March 4 2009). For the purposes of this article, I will hereafter use the term BUD as a label for the condition.

The Right to Bodily Integrity

Med.L.Rev. BDD, Radical Surgery and the Limits of Consent 157 handicap',52 while Bruno regards the disorder as a 'factitious disability disorder', in which amputation is desired or sought because the individual has lacked love and attention in the past and sees amputation as being a means of satisfying their previously unmet need for love and attention.53 Lawrence, who has observed parallels between the desire for limb amputation and GID, has suggested that the former condition represents the intersection of an 'uncommon target preference',54 (namely attraction to amputees) and an 'erotic target location error, in which the individual desires to turn his body into the desired erotic target (or a facsimile thereof), rather than simply desiring that body configuration in another person'.55 It has even been speculated that the condition may be a neuropsychological disorder, rather than a psychiatric one:56 that the body image 'mapped' into the sufferer's brain somehow does not match the physical contours of their body.57 Ramachandran and McGeoch58 hypothesise that BUD is caused by a 'dysfunction of the right parietal lobe' of the brain,59 which 'leads to an uncoupling of the construct of one's body image in the right parietal lobe from how one's body physically is',60 but further research would 52

JM Bensler and DS Paauw, 'Apotemnophilia Masquerading as Medical Mor-

53 bidity' (2003) 96 Southern Medical Journal 674; RM Henig, above n 25.

55

54

56 57

58 59 60

Bruno, above n 34, at 27. This diagnosis suggests that psychotherapy is an appropriate way of treating the disorder, so that the patient can develop awareness of their condition, acknowledge that they have not received the love and attention that they have desired, and end their disability-related obsessions and compulsions (at 258). C.f. A Bridy, 'Confounding Extremities: Surgery at the Medico-ethical Limits of Self-modification' (2004) 32 Journal of Law, Medicine & Ethics 148, at 150. Bayne and Levy suggest that, based on the limited data available, Bruno is wrong, and the desire for amputation is not reduced by psychotherapy: T Bayne and N Levy, 'Amputees by Choice: Body Integrity Identity Disorder and the Ethics of Amputation' (2005) 22 Journal of Applied Philosophy 75, at 84. Lawrence, above n 45, at 269.

ibid.

R Smith and K Fisher, 'Healthy Limb Amputations: Ethical and Legal Aspects' (2003) 3 Clinical Medicine 188. See e.g. Bayne and Levy, above n 53, at 76-7, who note that there are numerous instances in which a person's physical body and their body image may differ. E.g. children born without a limb may experience phantom limb sensations, and it has been suggested that: '... perception of our limbs is 'hardwired' into our brain and that sensations from the limbs become mapped onto these brain networks as we develop'. I. Cole, 'Phantom limb pain' (2006) Wellcome Trust website: http://wellcome.ac.uk/en/pain/microsite/ medicine2.html accessed 14 September 2006. C.f. Bridy, above n 53, at 151. VS Ramachandran and P McGeoch, 'Can Vestibular Caloric Stimulation Be Used to Treat Apotemnophilia?' (2007) 69 Medcial Hypotheses 250. Ibid. Ibid. They have suggested that parallels may be drawn between BUD and a condition called somatoparaphrenia, which may occur following a stroke in the right parietal region, and which leads to the patient denying 'ownership of a limb on the left side of his body—typically the arm', (Ibid., at 251) and

435

436

The Right to Bodily Integrity

158

MEDICAL LAW REVIEW

[2009]

be required to confirm this. The truth is that, although there are various theories with regard to this condition, there is a long way to go before it is properly understood.61 Although Smith contends that study of patients with BUD who have undergone elective amputation indicates that surgery is the only truly successful treatment for the condition,62 these studies are on a very small scale, and vulnerable to criticism on the ground of bias, since the subjects may well be self-selected and there is a lack of any control group.63 This may be contrasted with the published studies of patients who have been diagnosed as suffering with BDD, which suggest that surgery, although commonly sought by such patients, is generally an unsuccessful treatment for the disorder,64 and that treatments such as cognitive behavioural therapy and the administration of selective serotonin reuptake inhibitors65 are much more effective.66 that the desire for amputation might temporarily be relieved by cold-water vestibular caloric stimulation (flushing cola water into the ear canal), a treatment which has provided some temporary relief to somatoparaphrenia sufferers (Ibid., at 251). C.f. CJ Ryan, 'Out on a Limb: The Ethical Management of Body Integrity Identity Disorder' (2009) 2 Neuroethics 21, 61 at 25-6. Furth and Smith concede that further research is required into the condition and its treatment: above n 40, at 85-7. C.f. Ryan, above n 60, at 25; Elliott, above n 34, at 235: The fact is that nobody really understands apotemnophilia. Nobody understands the pathophysiology; nobody knows whether there is an alternative to surgery; and nobody has any reliable data on how well surgery might work. 62

R Smith, 'Advice to Surgeons' at http:/rwww.biid.org/advice.php?page= 06Sdan=en (accessed March 4 2009). C.f. Smith and Fisher, above n 56; Furth and Smith, above n 39, at 69-72. 63 See e.g. Johnson and Elliott, above n 15, at 434; Bayne and Levy, above n 53, 64 at 83. This is because most BDD patients are dissatisfied with the results of surgery and report an increase in their BDD symptoms. This may lead to them undergoing repeated surgical procedures, which in turn may lead to increasing dissatisfaction. See e.g. CE Crerand and others, 'Nonpsychiatric Medical Treatment of Body Dysmorphic Disorder' (2005) 46 Psycnomatics 549; KA Phillips and others, 'Surgical and Nonpsychiatric Medical Treatment of Patients with Body Dysmorphic Disorder' (2005) III Focus 304. 65 'SSRIs'—a group of drugs which includes Prozac and Seroxat. 66 See e.g. KA Phillips and SA Rasmussen, 'Change in Psychosocial Functioning and Quality of Life of Patients with Body Dysmorphic Disorder Treated with Fluoxetine: A Placebo-controlled Study' (2004) 45 Psychosomatics 438; D Veale, 'Cognitive-behavioural Therapy for Body Dysmorphic Disorder' (2001) 7 Advances in Psychiatric Treatment 125. In contrast, in relation to BUD, Mr Smith has concluded that 'there are no known results reporting success, or of any treatment with drugs' specifically for BUD and that 'there is no known therapy that has transformed the yearning and desire of this powerful urge for amputation': Furth and Smith, above n 39, at 69-70. C.f. Anon., 'Medication strategies for BUD sufferers', at http://

The Right to Bodily Integrity

Med.L.Rev. BDD, Radical Surgery and the Limits of Consent 159 III. ARGUMENTS FOR AND AGAINST HEALTHY LIMB AMPUTATION A. The 'Yuk9 Factor and Concerns about Capacity My initial reaction, upon hearing of the Scottish operations, was not dissimilar from that of the bioethicist Arthur Caplan, who commented: 'It's meshugeneh67 - absolutely nuts. It's absolute, utter lunacy to go along with a request to maim somebody'.68 This emotional response of disgust, sometimes called the 'yuk' factor,69 is significant, not least because it rings alarm bells that the practice under consideration might be unethical.70 But, as John Harris has observed, it is not necessarily determinative of what is morally or legally permissible: It is perhaps salutary to remember that there is no necessary connection between phenomena, attitudes or actions that make us uneasy, or even those that disgust us, and those phenomena, attitudes and actions that there are good reasons for judging unethical. Nor does it follow that those things we are confident are unethical must be prohibited by legislation or regulation.71 Critics of healthy limb amputations have questioned whether patients seeking such surgery have sufficient capacity to give a valid consent to treatment. Caplan, in particular, has questioned 'whether sufferers are competent to make the decision when they're running around saying "chop my leg off"'.72 These objections focus upon the nature of the 'wannabes' belief that they need to have a limb amputated, suggesting that, because it is bizarre, irrational and obsessional, they are unable properly to 'weigh' information relevant to the decision, that these desires are not autonomous and ought not to be respected or followed. www.biid.org/advice.php?page=04Sdan=en accessed 4 March 2009. First's study of 52 subjects who desired healthy limb amputation found that psychotherapy and medication made no change to 'tne intensity of the desire for amputation', although medication often improved the mood of the subject: First, above n 42, at 7-8. 67 Yiddish: crazy, insane. Technically a crazy or insane woman. Although this may have been the initial response of Professor Caplan, it appears from Dotinga's article that Caplan's main concerns related to the issue of capacity and whether to perform healthy limb amputation in such circumstances would amount to the surgeon harming the patient, which would be unethical, above n 39. 68 Dotinga, above n 39. 69 S Lee, Law and Morals (Oxford University Press 1986) 37. 70 Bayne and Levy, above n 39, at 84. 71 J Harris, Clones, Genes and Immortality (Oxford University Press 1992) 37. 72 C.f. The discussion of 'Sentimental morality', at 55-9. Dotinga, above n 39.

437

438

The Right to Bodily Integrity

160

MEDICAL LAW REVIEW

[2009]

Given the drastic and irreversible nature of amputation surgery73 and that these 'wannabes' have been diagnosed as suffering from a mental disorder, capacity needs to be approached with care, and any doctor's assessment with regard to capacity ought to be confirmed by a psychiatrist.74 However, it cannot be said that, merely because of their outre beliefs, such patients inevitably lack capacity. When considering whether an adult has capacity to consent to medical treatment, the starting point must be that 'a person must be assumed to have capacity until it is established that he lacks capacity'.75 In English law, both at common law and under the Mental Capacity Act 2005 (MCA), a functional approach has been taken towards the concept of capacity. Under this approach, the focus is upon the specific decision at issue: 'the assessor asks whether an individual is able, at the time when a particular decision has to be made, to understand its nature and effects'.76 The effect of this may be that 'someone may have capacity for one purpose but lack capacity for another purpose'.77 For example, a person may have capacity to marry, but not to make a valid will,78 or to have sex, but not to consent to medical treatment.79 The MCA section 1(4) reflects the approach of the common law by making it clear that the presumption of capacity is not displaced merely because a person makes what may be regarded as a 'bad' choice: 'a person is not to be treated as unable to make a decision merely because he makes an unwise decision'.80 Nor does the fact that the patient suffers from a mental disorder necessarily mean that the presumption of capacity is displaced:81 for example, in Re C, although the patient 73

74

75

76 77 78 79 80

81

This is significant when considering the question of capacity because the courts have emphasised that a patient's capacity must be 'commensurate with the gravity of the decision... The more serious the decision, the greater the capacity required.' Re T (Adult: Refusal of Treatment) [1993] Fam 95 at 115-116, per Lord Donaldson MR; c.f. Re MB (Medical Treatment) [1997] 2 FLR 426 (CA) 436-7 per Butler-Sloss LJ. A Grubb, Principles of Medical Law, 2nd edn. (Oxford University Press, 2004) para. 3.81. C.f. BMA, Medical Ethics Today (2nd edn BMJ Books 2004) 94. Mental Capacity Act 2005, ('MCA'), s.l(2). This puts in statutory terms the common law presumption of capacity: c.f. In re T (Adult: Refusal of Treatment), above n 73. Law Commission, No. 231, Mental Incapacity (1995) 3.5. In the Matter of MM (an adult) [2007] EWHC 2003 (Fam) at [64] per Munby J. In the Estate of Park, Park v Park [1954] P 112. Above, n 77. See e.g. In re T (Adult: Refusal of Treatment), above n 74. C.f. Re B (Consent to Treatment: Capacity) [2002] 1 FLR 1090; P Bartlett, Blackstone's Guide to the Mental Capacity Act 2005 (2nd edn Oxford University Press 2008) 33-34, 47. Mental Capacity Act 2005, Code of Practice ('CoP'), (2007), paras 4.24.10. C.f. Re C (Adult: Refusal of Treatment) [1994] 1 WLR 290, 294;

The Right to Bodily Integrity

Med.L.Rev. BDD, Radical Surgery and the Limits of Consent 161 was severely mentally ill and suffering from delusions, he was still found to have capacity to refuse to have his leg amputated,82 and patients suffering from GID are nevertheless found to have capacity to consent to gender re-assignment.83 The test for capacity laid down in the MCA, s.2(l) establishes that: A person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain. Section 3(1) provides that, for the purposes of section 2, a person is unable to make a decision for himself if he is unable: (a) to understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) communicate his decision (whether by talking, using sign language or any other means).84 Given this statutory test and the principles set out in section 1 MCA, it cannot be said that the views of those seeking healthy limb amputation are so abnormal that they must necessarily lack capacity: the decisionmaking of each patient in relation to each decision to consent would have to be carefully assessed to see whether the presumption of capacity was rebutted, bearing in mind that one of the principles underlying the Masterman-Lister v Brutton & Co., Jewell and Home Counties Dairies [2002] EWCA Civ 1889. 82 r1994] i An E