Ethics and the New Genetics: An Integrated Approach 9781442684324

Table of contents :
Contents
Preface
Introduction. Employing Functional Specialization: Overview of a Group Experiment
Part One. Some Bioethical Issues in Human Genetics: Delineating the Opposed Stances
1. Research in Human Genetics: Technology, Information, Therapeutic Promise, and Challenge
2. Clinical Applications of Research in Human Genetics
3. Genetics in Health Care
4. Commercialization of Human Genetic Research
Part Two. Differentiating the Pre-Empirical Components of the Opposed Stances
5. The Character of Moral Value, Moral Knowledge, and Moral Debate
6. Religion as the Dynamic Horizon of Moral Discernment
7. Discerning Catholic Positions on Particular Ethical Issues
Part Three. Toward Determining the Normative Stances
8. Who Owns the Human Genome?
9. Genetics, Medicine, and the Human Person: The Papal Theology
10. Key Issues in Genetic Research, Testing, and Patenting
11. Expanding Horizons for Moral Discernment: A Retrospective Synthesis
Index
Contributors

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ETHICS AND THE NEW GENETICS: AN INTEGRATED APPROACH

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Ethics and the New Genetics An Integrated Approach

Edited by H. DANIEL MONSOUR

UNIVERSITY OF TORONTO PRESS Toronto Buffalo London

www.utppublishing.com © University of Toronto Press Incorporated 2007 Toronto Buffalo London Printed in Canada ISBN 978-08020-9273-1

Printed on acid-free paper Lonergan Studies

Library and Archives Canada Cataloguing in Publication Ethics and the new genetics : an integrated approach / edited by H. Daniel Monsour. (Lonergan studies) Originated as papers presented at a think tank sponsored in 2002 by the Canadian Catholic Bioethics Institute. ISBN 978-0-8020-9273-1 1. Human genetics – Moral and ethical aspects. 2. Human genetics – Religious aspects – Catholic Church. 3. Bioethics – Religious aspects – Catholic Church. 4. Human genetics – Research – Moral and ethical aspects. I. Monsour, Daniel, 1958– II. Canadian Catholic Bioethics Institute. III. Series. QH438.7.E838 2007

2419.649599935

C2006-906461-X

University of Toronto Press acknowledges the financial assistance to its publishing program of the Canada Council for the Arts and the Ontario Arts Council. University of Toronto Press acknowledges the financial support for its publishing activities of the Government of Canada through the Book Publishing Industry Development Program (BPIDP).

Contents

Preface vii michael vertin INTRODUCTION Employing Functional Specialization: Overview of a Group Experiment 3 michael vertin PART ONE: SOME BIOETHICAL ISSUES IN HUMAN GENETICS: DELINEATING THE OPPOSED STANCES 1 Research in Human Genetics: Technology, Information, Therapeutic Promise, and Challenge 15 robert allore Response: Anne Summers 2 Clinical Applications of Research in Human Genetics christine e. jamieson Response: Jaro Kotalik 3 Genetics in Health Care anne summers

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4 Commercialization of Human Genetic Research 58 david blake farrell and eileen de neeve Response: Peter Ibbott

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Contents

PART TWO: DIFFERENTIATING THE PRE-EMPIRICAL COMPONENTS OF THE OPPOSED STANCES 5 The Character of Moral Value, Moral Knowledge, and Moral Debate 79 cynthia crysdale Response: Moira McQueen 6 Religion as the Dynamic Horizon of Moral Discernment gordon rixon Response: Leo Walsh 7 Discerning Catholic Positions on Particular Ethical Issues john dool Response: Albert Moraczewski

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PART THREE: TOWARD DETERMINING THE NORMATIVE STANCES 8 Who Owns the Human Genome? daniel p. sulmasy

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9 Genetics, Medicine, and the Human Person: The Papal Theology 134 joseph boyle 10 Key Issues in Genetic Research, Testing, and Patenting 143 barry f. brown and russell j. sawa 11 Expanding Horizons for Moral Discernment: A Retrospective Synthesis 165 william f. sullivan Index 179 Contributors

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Preface michael vertin

An experienced traveller often finds that her visit to an unfamiliar city is more efficient and enjoyable if, before commencing it, she learns something of the city’s history and consults a map of its neighbourhoods. In similar fashion, someone who has picked up this volume may benefit from a sketch of where it came from and what it hopes to do. To that end, this Preface offers a few words about the origin of the Canadian Catholic Bioethics Institute, its mission and method, the conference from which the volume emerged, and the contents of the volume itself. In the late 1990s, discussions among a group of physicians, lawyers, ethicists, and theologians in southern Ontario brought to light the potential value of a bioethics institute guided by Catholic investigators. Such an institute would draw upon the excellent initiatives already under way in various parts of the country, complement them with its own efforts, and thus aim to enhance the Catholic contribution to the public conversation in Canada about questions of bioethics. These discussions proceeded with the encouragement of Cardinal Aloysius Ambrozic, Archbishop of Toronto, and were facilitated by Dr Richard Alway, president of the University of St Michael’s College, Toronto. In February 2000, the group presented a proposal for such an institute to the Catholic Archdiocese of Toronto. The proposal was subsequently accepted, an initial funding commitment was made, and additional funding was secured from other Canadian dioceses and Catholic organizations. Early in 2001, Dr William Sullivan was chosen to be director of the fledgling enterprise; it was named the Canadian Catholic Bioethics Institute and was formally affiliated with the University of St Michael’s College.

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The remainder of 2001 was devoted to establishing contacts with interested experts and cognate organizations and receiving their suggestions for a precise articulation of the institute’s goals and a strategy for pursuing them. A three-day consultation in June was attended by some seventy Catholic clinicians and academics from across Canada. Smaller meetings were held during the fall in conjunction with the annual conventions of the Catholic Health Association of Ontario and the Canadian Bioethics Society. In November, a two-day conference marking the institute’s official opening provided a further opportunity for recommendations and refinements. As a result of the aforementioned consultations, the mission of the institute came to be specified as follows: to nurture collaborative multidisciplinary research and communication on bioethical issues in the Canadian context and in light of Catholic values. This specification of the focus on bioethical issues, the centrality of the Canadian context, and the illuminating role of Catholic values simply made explicit what had been intended from the beginning. But the mission statement added three further elements. First, primary emphasis would be given to fostering research and communicating the results. Such related tasks as parochial education, lobbying of governmental agencies, and attempting to influence public opinion, important though they are, would remain secondary concerns at best or even be left entirely to other organizations. Second, the research envisioned would be multidisciplinary in its scope. It would aim to consider bioethical issues not as a series of discrete questions but rather in their full amplitude, with all their interrelations, presuppositions, and implications, and to address them with the resources of philosophy and theology, and of all the pertinent empirical disciplines. Third, the research envisioned would be collaborative in its mode. Investigators in the diverse areas would actively cooperate with one another in a common effort of accurately and adequately posing the bioethical questions and developing answers to them. The consultations also provided an opportunity for participants to think about an appropriate method for pursuing the institute’s mission, a method that would meet two formidable challenges faced by any investigation that is genuinely multidisciplinary. The first challenge is organizational. The data relevant to a multidisciplinary investigation are too extensive for any one individual to address, and the skills required are too diverse for any one individual to master. How then are those data to be managed and those skills to be exploited? The second challenge is epistemological. It arises from the fact that

Preface ix

every investigator presupposes the cognitional validity of some investigative method. No investigator, regardless of the area, ever undertakes an investigation without already at least implicitly having decided which investigative procedures would disclose what is real rather than just phenomenal, what is genuinely objective rather than merely subjective.1 And that decision inevitably influences her actual investigative procedures and the significance she attributes to their results. But how is the method that a given investigator presupposes as cognitionally valid to be confirmed as such, especially when other investigators in the same area often seem to presuppose the cognitional validity of other methods? How, if at all, can one determine which investigative procedures would indeed disclose reality rather than mere appearance, genuine objectivity rather than mere subjectivity? Against the background of this two-part problem, the consultants discussed the multidisciplinary methodology elaborated by Canadian philosopher and theologian Bernard Lonergan. In Method in Theology (published in 1972), Lonergan proposed a technique for coping with the organizational and epistemological challenges that typify a multidisciplinary investigation. He labelled the technique ‘functional specialization.’ (For more details about functional specialization, see the present volume’s Introduction: ‘Employing Functional Specialization: Overview of a Group Experiment.’) At the November 2001 conference, a group of some forty consultants unanimously agreed that the institute should provisionally adopt the method of functional specialization for pursuing its mission. Though by no means intended totally to exclude alternative approaches, the tentative favouring of functional specialization might well save the institute both time and effort by allowing it to profit from Lonergan’s extensive, theologically attuned, and widely esteemed efforts to meet exactly the types of challenges that its own multidisciplinary investigation would need to confront in any case.2 The institute’s first ‘think tank’ was an effort to employ at least some elements of functional specialization in order to investigate a specific set of bioethical issues in multidisciplinary fashion. The novelty of such multidisciplinary inquiry in bioethics is worth emphasizing. At the same time, the congeniality of the investigative atmosphere was enhanced by broadly shared philosophical and theological commitments on the part of the forty or so invited scholars and professionals who participated. Held in Guelph, Ontario, for four days in June 2002, the conference

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unfolded in three main stages, corresponding to its first three days, with the final day devoted to administrative matters and future plans. In the first stage, participants explored four related sets of facts about human genetics that are currently in the forefront of public awareness, the key bioethical issues that people commonly raise about those facts, and the main competing bioethical stances that people commonly take on those issues. In the second stage, participants explored the connections that exist at least implicitly between the particular bioethical issues and the competing stances on them, on the one hand, and certain general moral, broadly religious, and specifically Catholic issues and the competing stances on them, on the other. In the third stage, participants returned to the topics of the first stage in light of the findings of the second. This volume presents the results of the think tank. Just as the elements of that conference were organized according to a unitary plan elaborated in detail beforehand by the planning committee, so this volume is not a mere collection of more or less independently conceived conference papers but rather a single multi-authored work. It is the integral product of many labourers’ collaborative efforts. Like the conference, the volume is divided into three main parts. To take advantage of three methodological clarifications that are noted below in the Introduction, the editor has denominated these parts with titles that differ subtly but significantly from the labels given to the three main stages of the conference. Hence, Part 1 is ‘Some Bioethical Issues in Human Genetics: Delineating the Opposed Stances.’ Part 2 is ‘Differentiating the Pre-empirical Components of the Opposed Stances.’3 And Part 3 is ‘Toward Determining the Normative Stances.’ (Readers wishing to have a more detailed synopsis of the volume’s contents before proceeding further may consult the concluding chapter, ‘Expanding Horizons for Moral Discernment: A Retrospective Synthesis.’) The volume is intended to be of interest to a variety of audiences. Some persons may be drawn to Part 1, discovering it to be a helpful primer on human genetics and certain important current bioethical issues and debates associated with it. Others may be drawn to Part 2, reading it for its more general efforts in moral philosophy, or philosophy of religion, or Christian (and, indeed, specifically Catholic) theology. The most profound hope of the planning committee, however, is that at least some persons may be drawn to Part 3, to ponder fruitfully both what it says and what it does not yet succeed in saying. For Part 3 is

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intended structurally to presuppose the two preceding parts, and thus to display in culminating fashion both the question of how all the elements in those two parts are related and the answer that the method of functional specialization purports to provide. Perhaps, then, it is in Part 3 that both the achievements and the defects of the institute’s first think tank are the most obvious. May the achievements be a cause for celebration, and the defects a goad to improved efforts the next time around.

Notes 1 Note that presuppositions delineating which investigative procedures would disclose what is real or factual include presuppositions delineating which investigative procedures would disclose what is really good or genuinely valuable. No bioethicist, for example, undertakes an investigation without already at least implicitly having decided which investigative procedures would disclose what is truly morally good. 2 Even those who disagree with Lonergan’s stance on this or that issue often laud him for clearly identifying which issues are methodologically the key ones. At least in this respect, then, it would seem that every bioethical investigator can benefit from Lonergan’s work. 3 For the exact meaning of ‘pre-empirical,’ see Introduction, especially note 3.

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Ethics and the New Genetics An Integrated Approach

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INTRODUCTION Employing Functional Specialization: Overview of a Group Experiment michael vertin

The Preface of this volume recounted the formidable organizational and epistemological challenges faced by any systematic inquiry that aspires to be genuinely multidisciplinary, and the method of ‘functional specialization’ elaborated by Canadian philosopher and theologian Bernard Lonergan to meet those challenges. Though he developed it for multidisciplinary theological investigation in particular, Lonergan envisioned functional specialization as potentially fruitful for any multidisciplinary scholarly or scientific investigation and, indeed, for the complete set of such investigations.1 The present chapter provides more details about functional specialization and about the effort by the Canadian Catholic Bioethics Institute to utilize it for the multidisciplinary study of a specific set of bioethical issues. The Features of Functional Specialization The features of functional specialization may be illuminated by comparing it with two other approaches. Field specialization organizes an investigation in terms of the data with which it begins. Thus, for example, biology can be divided into botany, the study of plants, and zoology, the study of animals. Historiography regularly is segmented according to the periods it investigates, such as ancient, medieval, modern, and postmodern. Religious studies frequently is split into treatments of eastern and western religions. Subject specialization, on the other hand, organizes an investigation in terms of the results it reaches, with different arrangements sometimes emerging because of basic theoretical differences between investigators. Thus, for example, religious studies often is

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partitioned into psychology of religion, sociology of religion, philosophy of religion, and so forth. Historiography can subscribe to linear, cyclical, or chaotic models. Biology can be structured along Darwinian or creationist lines.2 In contrast to both of the foregoing, functional specialization organizes an investigation in terms of the concrete process that, at their best, investigators actually go through in moving from data to results. It envisages that process as comprising eight distinct but interrelated sets of specialized operations or functional specialties. While it is beyond the scope of this introduction to present the functional specialties in detail, three points are especially pertinent here. First, functional specialization distinguishes sharply between what one encounters only in a particular investigative situation, the situation’s empirical components, and what one brings to that situation, the situation’s pre-empirical components. The empirical components stand to the pre-empirical components like the respective lower and upper blades of a scissors; and the forward movement of the investigation is like the closing of the scissors’ blades.3 The most basic elements of what one brings – the radically pre-empirical components of the situation – are one’s philosophical presuppositions, one’s operative (if not always explicit) answers to two basic philosophical questions: (1) What acts do I experience myself performing whenever I am at least apparently knowing? (2) Why, if at all, does performing those acts constitute valid knowing?4 Differences between the operative responses of various investigators to these two basic questions commonly constitute a fundamental, though often overlooked, part of their disagreements about particular investigative conclusions. Second, functional specialization5 purports to show that in any area of investigation, from subatomic physics to Trinitarian theology, the correct answer to the first basic question is that acts of apparent knowing culminate in judgments – at least judgments of fact, and sometimes also judgments of value. Moreover, reaching a judgment is always a process of three or four steps: attending to data, forming a hypothesis about the intelligible unity of those data, affirming the reality of that intelligible unity (or denying it), and – where pertinent – affirming the goodness of that reality (or denying it). If any step of the pertinent process is omitted or poorly made, the judgment will be suspect. Still further, the correctness of this answer is confirmed by the answer’s concrete incontrovertibility. Any sufficiently self-aware investigator discovers that she cannot consistently reject it. Indeed, any verbal denial of the answer

Introduction

5

is inevitably undercut by her operational endorsement of it in the very making of that denial. For if she asserts, ‘Acts of apparent knowing do not culminate in judgments,’ she engages in a process of apparent knowing that culminates in a judgment. Third, functional specialization6 purports to show that the correct answer to the second basic question is that a judgment is cognitionally valid insofar as it is made in a way that accords with one’s most authentic personal orientation. In other words, a judgment discloses reality rather than mere appearance to the extent that it is a judgment that is faithful to the best in oneself. Genuine objectivity follows from authentic subjectivity.7 And, just as with the answer to the first basic question, the correctness of this answer is confirmed by the fact that one cannot deny it without operational self-contradiction. Furthermore, functional specialization distinguishes sharply between the judgments deemed cognitionally valid by other persons and communities, whether past or present, and the judgments deemed cognitionally valid by oneself and one’s own community. And it holds that although the ultimate goal of an investigation is to reach judgments that accord with one’s most authentic personal orientation, careful study of others’ judgments is commonly an important step in successfully pursuing that goal. The Advantages of Functional Specialization Functional specialization has at least three significant potential advantages. The first advantage is that, by carefully distinguishing the various elements of the investigative process itself, functional specialization counters both oversimplification – the neglect of certain tasks – and confusion – the blurring of distinct tasks. Gathering data differs from formulating a hypothesis, both differ from affirming reality, and all three differ from affirming value. Again, it is one thing to learn that others have judged X to be Y, and it is quite another to judge for oneself that X is Y. Further, discovering the explicit import of another’s judgment is different from discovering the philosophical presuppositions that inevitably shape that judgment’s integral import, and both are different from determining one’s own agreement or disagreement with those presuppositions. The second advantage is that, by carefully relating what it has distinguished, functional specialization displays the diverse investigative tasks as mutually complementary contributions to a common enterprise.

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Gathering data, formulating hypotheses, affirming reality, affirming value, discovering others’ judgments, assessing others’ judgments, elucidating philosophical presuppositions, assessing philosophical presuppositions – functional specialization lays out just how all these different operations fit together. And thus it both restrains exaggerated ambitions and encourages appropriate exertions. It makes clear that no task that is actually just a part of the total investigative enterprise can expect to satisfy the requirements of the whole. But it makes equally clear that the flourishing of the total enterprise requires the contribution of every part. The third advantage, which follows from the preceding, is that functional specialization provides a way of meeting the organizational and epistemological challenges that confront any multidisciplinary investigation. Recognizing that an adequate multidisciplinary investigation can only be a communal enterprise, functional specialization articulates a technique of effective collaboration for the community of investigators. Organizing the enterprise in terms of neither initial data nor terminal results but rather the investigative operations themselves, it encourages individual investigators to devote themselves to one or another functional specialty and expressly to envision their practice of that specialty as contributing to a common effort. Making explicit that the cognitional validity of an investigator’s judgments depends upon the investigator’s personal authenticity as a judge, functional specialization highlights that resolving disagreements over investigative conclusions is always in some way a matter of resolving personal differences between the investigators themselves; it sets the stage for the constructive dialogues that foster personal development and, when necessary, change. Functional specialization thus gives investigators solid grounds for anticipating collective progress toward an outcome that notably transcends in both cognitional range and cognitional validity what individuals are capable of achieving on their own. A Group Experiment The 2002 Guelph conference was, in effect, the first in a projected series of group experiments in using functional specialization for the multidisciplinary investigation of bioethical questions. It was overseen by a planning committee that was headed by William Sullivan as director and included Joseph Boyle, Barry Brown, Rory Fisher, John Heng, Jo-Anne Jackson-Thorne, and Michael Vertin.

Introduction

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In the first of the conference’s three stages, participants explored four related sets of facts about human genetics that are currently in the forefront of public awareness, the key bioethical issues that people commonly raise about those facts, and the main competing bioethical stances that people commonly take on those issues. These explorations proceeded through the presentation and discussion of papers, written at the invitation of the planning committee, that considered the following issues: research in human genetics, clinical applications and the commercialization of such research, and justice in the allocation of new and emerging genetic technologies. Group discussion of these papers was facilitated by at least one prepared response. In the terms of functional specialization, this first stage was conceived by the planning committee as the effort of beginning to do justice to the lower blade of the scissors of bioethical inquiry in the particular area of human genetics. The actual papers largely met the expectations of the planning committee in this regard. The prepared responses, though quite illuminating in themselves, usually were less clear as illustrations of the lower blade. In the conference’s second stage, participants explored the connections that exist at least implicitly between the particular bioethical issues and the competing stances on them, on the one hand, and certain general moral, broadly religious, and specifically Catholic issues and the competing stances on them, on the other. The dynamic of this exploration in turn led participants toward attempting to decide between the competing stances on each of these three levels and to articulate their decisions, though the limited time available and the personal character of such an attempt meant that it was only initiated and not completed. This stage of the work proceeded through the presentation and discussion of papers, written at the invitation of the planning committee, that considered the following issues: relating particular and foundational stances in ethics, the character of moral value, relating foundational stances on moral value and religious value, and linking Catholic positions on particular ethical issues to foundational stances on the character of moral value and religious value. As in the first stage, group discussion of these papers was facilitated by a prepared response to each.8 In the terms of functional specialization, the second stage was conceived by the planning committee as the effort of beginning to do justice to the upper blade of the scissors of bioethical inquiry. As before, the actual papers substantially fulfilled the expectations of the planning

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committee in this respect. The prepared responses, while quite perceptive as such, typically were not obvious illustrations of the upper blade. In the conference’s third stage, participants returned to the topics of the first stage in light of the findings of the second. Insofar as one has begun to make and articulate one’s decisions between the competing stances on the general moral, religious, and Catholic issues, what do one’s stances on those issues imply for one’s decision between the competing stances on the particular bioethical issues of human genetics? By contrast with the earlier stages, the work of this stage was focused not by papers written before the conference but by three relatively informal synthesizing presentations prepared after the conference’s first two days.9 In the terms of functional specialization, the third stage was conceived by the planning committee as the effort of beginning to close the blades of the scissors of bioethical inquiry in the particular area of human genetics. Concretely, these synthesizing presentations constituted important substantive contributions to the conference, but they were less successful as illustrations of the culminating methodological stage than had been anticipated. As the next section indicates, part of the reason for that difficulty turned out to be an ambiguity in the planning committee’s conception of that culminating stage. Indeed, the need for refinements in the conceptions of all three stages eventually became manifest. Three Desirable Methodological Clarifications The principal substantive results of the Guelph conference began to emerge with the conference presentations themselves. Those results stand out more definitively in the papers that, as refined by the presenters after the conference, make up the three parts of the present volume. A further group of results began to emerge in the debriefing discussions conducted with various participants by the institute director in the weeks and months that followed the conference proper. These additional results are methodological rather than substantive. They led to the conclusion that certain clarifications are desirable in the institute’s conception and implementation of the method of functional specialization. Retrospectively, the clarifications would facilitate a more accurate portrayal of the underlying goal that the planning committee intended for the Guelph conference. They also illuminate why, given the previous absence of such clarity, some participants were led to express puzzle-

Introduction

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ment about how the conference’s three main stages hung together. Prospectively, the clarifications will enhance the methodological precision of future multidisciplinary investigations the institute might undertake, and thus improve the likelihood of their successful outcome. The chief desirable methodological clarifications are three. The first is that the initial step in the functionally specialized study of any bioethical issue is simply delineating the opposed stances on that issue. It is to grasp and articulate the opposed stances in their concrete totality, while not yet attempting to distinguish between their empirical and preempirical components. That is to say, the aim of the first step is merely to provide a relatively complete portrayal of the problem presented by the fact that different bioethicists hold different stances on the same bioethical issue. It is not yet to analyse those stances themselves in terms of the distinction between what each bioethicist attends to in a particular investigative situation and what she brings to that situation. At this stage, any talk of a scissors of inquiry, with its respective lower and upper blades, is premature.10 The second chief methodological clarification is that the second step of a functionally specialized bioethical study is differentiating the preempirical components. More amply, the second step makes explicit the pre-empirical components of each of the opposed bioethical stances, highlights that the opposition between those stances often stems from differences in their respective pre-empirical components, and determines which set of pre-empirical alternatives is the correct or normative one.11 Some bioethicists suppose that their disagreements stem solely or at least primarily from empirical differences, differences between what they have attended to in particular investigative situations; thus they suppose that the sole or at least primary way of resolving their disagreements is more extensive or intensive attending. The second step of a functionally specialized study undercuts that supposition by showing that bioethical disagreements often stem primarily or even solely from pre-empirical differences, differences between what respective bioethicists have brought to particular investigative situations – at root, different operative (if not always explicit) answers to the two basic philosophical questions. Hence a necessary condition of resolving the disagreements is to identify the normative answers to those basic questions and to adopt them. The second step culminates with that identification and adoption.12 It is only with the second step of a functionally specialized bioethical study that the scissors analogy becomes relevant; and the initial comparison is to the opening of two or more pairs of scissors.13 Opposed bioet-

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hical stances that previously seemed to be just empirical now become manifest as composites, like scissors, with each composite having not only empirical components or a lower blade, but also pre-empirical components or an upper blade. Disagreements that previously seemed to be just empirical now become manifest as disagreements that may be primarily or even solely pre-empirical – differences between the respective upper blades. And an essential requirement for resolving the disagreements now becomes manifest as the task of identifying and adopting the normative upper blade. The third chief methodological clarification is that the third step of a functionally specialized bioethical study is determining the normative stance on the bioethical issue being studied. Rejecting in advance every bioethical stance whose pre-empirical components are not normative, the community of investigators seeks out the bioethical stance whose empirical components most fully accord with the normative pre-empirical components. This third step is the explicit closing of the scissors of bioethical inquiry, where the previously identified normative upper blade now closes upon the lower blade, and the resulting closed scissors explicitly display the normative concrete bioethical stance as a composite. While not violating the abstract principles of logic, this closing of the scissors is not a logical deduction; rather, it is a matter of concrete discernment, sagacious insight, and practical wisdom.14

NOTES 1 Bernard Lonergan, Method in Theology (London: Darton, Longman & Todd; New York: Herder and Herder, 1972). See especially chapter 5, ‘Functional Specialties.’ 2 In terms that may be familiar to some, Lonergan’s distinction between field specialization and subject specialization is analogous to the scholastic distinction between a discipline’s material object and its formal object. 3 For readers familiar with Lonergan’s writings, let me add a terminological note. Lonergan uses the words ‘experiential’ and ‘empirical’ more or less interchangeably in reference to both data of sense and data of consciousness – and, by extension, the investigations beginning with them. I retain ‘experiential’ in Lonergan’s sense, but I draw a distinction within it between ‘empirical’ and ‘pre-empirical.’ On my terminology, an investigation is empirical if it begins with (a) data of sense or (b) data of consciousness insofar as they are conditioned intrinsically by data of sense. If an investigation begins with data of

Introduction

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5 6 7

8 9 10

11

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consciousness insofar as they are not conditioned intrinsically by data of sense, then it is pre-empirical. (For example, an investigation that begins with a red content I see is empirical. An investigation that begins with my experience of seeing a red content is also empirical. But an investigation that begins with my experience simply of seeing – or hearing, questioning, understanding, judging, and so forth – is pre-empirical.) Thus my contrast between pre-empirical and empirical corresponds to the contrast often drawn by Frederick Crowe between structural and historical. See, for instance, Crowe’s Developing the Lonergan Legacy: Historical, Theoretical, and Existential Themes, ed. Michael Vertin (Toronto: University of Toronto Press, 2004), 13–14, 154, 348–9, 354–5, 361–5. Moreover, it roughly though not exactly matches the contrast between a priori and a posteriori that is common in the broader history of explicit philosophy. In fact, Lonergan also lists a third basic philosophical question: What do I know when I perform acts of valid knowing? However, he contends that one’s answer to this third basic question is already implicit in one’s answers to the first two basic questions. See Method in Theology, 20–5; cf. 83, 238, 261, 297, 316. More exactly, the fifth functional specialty, Foundations. See Method in Theology, chapters 1, 5, 10, and 11. See the preceding note. See Method in Theology, chapters 1, 10, and 11, especially pages 6–25, 237–42, 265, 292. To some persons, such a claim smacks of relativism. For Lonergan’s extended argument that his stance, far from being a version of relativism, is a matter of critically grounded realism, see Insight: A Study of Human Understanding (London: Longmans, Green, 1957); vol. 3 of Collected Works of Bernard Lonergan (Toronto: University of Toronto Press, 1992). For his extended argument that this stance is implicit in the writings of Thomas Aquinas, see Verbum: Word and Idea in Aquinas (Notre Dame: University of Notre Dame Press, 1967); vol. 2 of Collected Works of Bernard Lonergan (Toronto: University of Toronto Press, 1997). The last three of these papers constitute Part 2 of the present volume. More formal versions of these three presentations were elaborated after the conference. They constitute Part 3 of the present volume. What in this compressed account I am designating the initial or first step in a functionally specialized study actually encompasses the first three functional specialties, namely, Research, Interpretation, and History. See Method in Theology, chapters 5 to 9. Since the pre-empirical components are components of the bioethical stances, investigators who would successfully make the components explicit

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must themselves have more than just passing familiarity with those bioethical stances, though they need not be full-fledged specialists in bioethics. 12 What I am here designating the second step actually encompasses the fourth and fifth functional specialties, namely, Dialectic and Foundations. It is important to note that making explicit (in Foundations) the correct or normative pre-empirical components is a matter of objectifying the concretely given criteria of one’s own authentic subjectivity, a matter of articulating what Lonergan labels one’s ‘intellectual, moral, and religious conversion.’ See Method in Theology, chapters 5, 10, and 11. 13 This is not to deny that the closing of the scissors is first in the order of concrete operations, as the meeting between the upper blade of one’s preempirical presuppositions and the lower blade of empirical data gives rise to a concrete stance on some particular issue. But in the order of objectification, the order of making explicit the components of the operational order, it is the opening of the scissors that first becomes manifest. 14 What I am here designating the third step actually encompasses the last three functional specialties not merely of theology but more broadly of integrated studies, namely, Policy-Making, Planning, and Execution. See Method in Theology, chapters 5, 12, 13, and 14.

PART ONE Some Bioethical Issues in Human Genetics: Delineating the Opposed Stances

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1 Research in Human Genetics: Technology, Information, Therapeutic Promise, and Challenge robert allore

While it is true that genetics is currently experiencing a revolutionary period of development, many of the important scientific and philosophical ideas associated with modern genetics have been the source of significant debate for over a century. Since the time of Charles Darwin’s work on heritable traits in different species and breeding populations, the subjects of evolution and heredity have been important topics for scientific and public discourse. Although the publication of The Origin of Species in 1859 marks a critical stage in the development of modern life sciences, it is important to recognize the ways in which Darwin’s insights into heredity were influenced by his awareness of the traditional selective breeding practices of animal breeders and farmers. Along with Darwin, another pioneer should be mentioned here. Working around the same time as Darwin, but apparently unknown to Darwin, the Augustinian monk Gregor Mendel was carrying out experiments on the heritability of traits in plants. Although Mendel’s insights went largely unnoticed during his lifetime, the rediscovery of his work in the early twentieth century began the revolution in genetics that continues today. We look back with a sense of wonder and appreciation at the progress in genetics research over the past hundred years. However, we also recall that during the first half of the twentieth century many governments, representing different positions along the political spectrum, supported a variety of eugenic policies directed toward supposedly improving the genetic stock of people living within their national or regional boundaries.1 The racist extremes of the Nazi regime serve as a sobering reminder of the ways in which scientific concepts can be perverted for political ends.2 Science and politics proved, once again, to be

16 Robert Allore

a volatile mixture when genetics research in the Soviet Union was overwhelmed by government-imposed demands that scientific explanations of heredity conform to socialist principles.3 In more recent years, policies in Sweden and in the People’s Republic of China have been criticized for their eugenic character.4 And now, some worry that the tendency in many public discussions of human genetics to employ the language of genetic determinism may promote a bottom-line mentality that could give rise to new forms of eugenics.5 Even the praise and excitement that rightfully surrounded the publication, in February 2001, of the first full draft sequence of the human genome was marred by bickering over questions of proprietary rights and the profits that might be derived from this new genetic information. This bickering occurred between publicly and privately funded organizations that were competitors in this monumental project to determine the sequence of the human genome. However, the fact that some people and some organizations may wish to promote eugenic ends using more up-to-date techniques should not prevent us from acknowledging that developments in the science of genetics in recent decades have elevated that science and its allied disciplines to a central, paradigm-setting position within biology and medicine. Advances in genetics have given rise to significant changes in the way we view a whole range of questions in biology, adding important new dimensions to fields as diverse as the study of human health and disease, agriculture, and the environment. Genetics research has even made us reconsider our approach to intellectual property rights. Recent decades also have witnessed the birth of biotechnology, biology’s contribution to the new ‘high-tech’ economies. This new science-based enterprise, founded largely on developments in genetics, demands new levels of oversight from scientists, governments, and the public, so that the results of scientific research may always be used to support the health, freedom, and flourishing of all peoples and, indeed, of the whole earth. Using medical genetics as a focus, I propose in this paper to examine briefly the general state of technology in modern genetics. The limited scope of this report dictates that only passing attention can be given to several important aspects of the ongoing revolution in genetics. However, by considering a few of the major developments in modern medical genetics, as well as the promise of the goods to come from this research, we will be better equipped to engage in the debates regarding the social impact of these scientific achievements.

Research in Human Genetics 17

Research Practices in Human Genetics In an effort to organize our examination of research practices in human genetics, I will divide recent developments into a few loosely defined categories. First, I note that many of the recent advances in human genetics are a consequence of the combination of classical modes of genetics research with our newly acquired ability to isolate and manipulate genes. Second, I show how the information gained from genomesequencing projects and the technological developments associated with these programs have added a whole new perspective to research in human genetics. Classical Human Genetics Classical human genetics – that is, the consideration of the relationships between genes and heritable conditions or disease states – remains the cornerstone of modern medical genetics. The unique perspective provided by clinical experience in human genetics helps to define the nature of disease while adding important insights into the proper use of new knowledge and technology. Long before the advent of modern medical genetics, it was understood that certain diseases showed complex but discernible patterns of inheritance in some families or communities. This common understanding of human biology helps to underscore the ways in which knowledge of family and extended family relationships contributes to research projects aimed at the elucidation of the genetic factors associated with particular disease states. Although we may point to a growing list of human diseases known to be associated with changes in single genes, we remain aware of the fact that many disease states will show a complex pattern of inheritance involving the interaction of several different gene products. In addition to our increasing understanding of the genetic elements associated with certain conditions, modern science draws our attention to the importance of environmental factors in the development of disease. Researchers seeking to identify the genetic components that influence the development of human disease, therefore, need to consider the environments in which these diseases occur in individuals and in populations. Thus, classical human genetics (that is, the analysis of heritable traits in families and communities) remains foundational for

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progress in medical genetics. By investigating the role of genes in human health and disease, and by examining the genetics of more easily studied organisms like the fruit fly, medical science continues to situate discoveries pertaining to particular genes within the larger context of the whole organism, populations, and the environment. New Technologies for Cloning and Manipulating Genes Despite the important and ongoing contribution of classical genetics, it is the technology and the discoveries associated with the new genetics that have received most of the attention in recent years. Many will be familiar with James Watson and Francis Crick’s 1953 publication of the double-helical structure of deoxyribonucleic acid (DNA). This discovery, combined with work in the genetics of simple organisms such as bacteria, yeast, fruit flies, and a number of different viral systems, opened the way for other revolutions in genetics. Research conducted on these easily manipulated genetic systems, together with studies of the physical and chemical properties of nucleic acids (DNA and ribonucleic acid [RNA]) have given rise to many of the technical developments associated with modern genetics. One particularly important consequence of this research has been the development of techniques that allow for the cloning and manipulation of individual genes, the study of their structure, and the examination of factors controlling gene activity. These techniques, which supply the foundations for activities classified under the term ‘genetic engineering,’ open up the possibility of gene therapy and the production of transgenic animals that might one day become the source of drugs or organs for transplantation into humans. Our ability to isolate and manipulate genes also provides the foundation for the new biotechnology industry. Gene Sequencing and Genome Projects Closely related to the technologies that allow the cloning and manipulation of genes are procedures that make it possible to read the sequence of a gene, that is, to determine the organization of the genetic code that specifies a gene or, indeed, any sequence of DNA. The Human Genome Project (HGP), the scientific project dedicated to reading and cataloguing the genetic code of our own species, has already changed the process of genetics research and the practice of clinical genetics. Thus,

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while the techniques used in genome-sequencing projects are derived from the tools of basic research, the information acquired through the sequencing of the human genome, and the genomes of a variety of other species, makes a unique contribution to modern genetics. Combined with information obtained through the methodologies of classical genetics, the HGP is helping researchers to identify and study an increasing number of genes important to human health and disease. New DNA-microarray technologies make it possible to probe thousands of genes in a single test permitting the analysis of gene-expression profiles from tumors, infected cells, or the cells of the immune system that are mobilized to fight disease. Genome-sequencing projects examining the pathogens responsible for tuberculosis, leprosy, and malaria, and the Streptomyces bacteria that produce many of the known, naturally derived antibiotics,6 promise to provide important new tools for the treatment of infectious disease. New genome-sequencing information will also provide insight into the ways in which bacteria, viruses, and other pathogens undergo the genetic changes that help them to elude or cripple the human immune system. Through the use of this new genetic information, investigators may develop new vaccine strategies that are effective against many serious human diseases. The creation of computer databases of genetic-sequence information has given rise to the field of bioinformatics, a discipline dedicated to elaborating new computer-based methods for analysing large sets of genome-sequence data. In the field of proteomics, information from genome-sequencing projects is being combined with the large-scale analysis of proteins, their structures, and the complexes they form. Proteomics, which engages the full range of technologies associated with modern biochemistry, genetics, and computer science, holds out the possibility of new medical and pharmaceutical products, together with new resources for agriculture and a range of industrial processes. The field of pharmacogenomics endeavours to use information from various genome-sequencing projects to develop new drugs for the treatment of a host of maladies, ranging from infectious diseases to different forms of cancer and mental illness. The recent discovery that small sequences of RNA can be utilized to regulate the expression of genes holds out the possibility of powerful new gene-based therapies.7 Developments in stem cell biology and gene therapy suggest additional ways that advances in genetics and other areas of medical research may bring improvements to our understanding and treatment of human disease.

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Issues to Consider Genetics, Disease Diagnosis, Susceptibility, and Risk As we enter more deeply into this new age of genetic information and technology, of new vaccines and medicines, of genetic testing and the promise of gene therapies, we are drawn to consider the medical, social, and religious implications of these new technologies. The increasing availability of genetic tests for a host of diseases should facilitate the diagnosis and treatment of these maladies. The rising popularity of genetic tests may also feed the illusion that the tools of modern genetics offer us complete knowledge of human biology, a knowledge that opens up the possibility of controlling our destiny. A comprehensive understanding of the concept of human health and disease, of the person, and of human society will be needed if we are to use this new genetic information and the marvellous accomplishments of medical science in ways that respect the dignity of the human person. In the course of medical practice today, genetic tests are employed to assist in the diagnosis of diseases in situations where some disease symptoms are already in evidence. Genetic tests are also performed to determine disease susceptibility, risk, or genetic carrier status. In particular, people with a family history of a serious disease may request genetic testing to determine their own susceptibility and the likelihood of passing certain genetic traits on to their children. Because the frequency of conditions such as Down syndrome rises with increasing maternal age, physicians often recommend an examination of the chromosomal make-up of the fetuses of older women. We stress the need to make genetic counselling an integral component of this growing practice of genetic testing. In addition to the voluntary use of genetic tests to support medical diagnosis, treatment, and research, or to provide information to people faced with important medical decisions, genetic testing may also be carried out in a coercive environment. Health and life insurance companies may want to use genetic tests to determine coverage eligibility or to establish premiums for a particular insurance policy.8 Prospective employers could also use genetic tests to assess the potential burden to company-supported health, disability, and life insurance programs. In an era of extensive genetic information, there is a need to enact laws that prohibit genetic discrimination if we are to avoid situations where a person’s employment and insurance opportunities are determined largely by the structure of a few or even one of their genes. Where

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national or community-based genetic research or screening programs are undertaken, care must be taken to avoid stigmatizing individuals or communities identified as carriers of certain genetic traits. Wide public attention to particular features of our genetic identity brings with it the risk that some people could be labelled as ‘genetic undesirables.’ Only when we recognize that we all likely carry genes that place us at heightened risk of developing certain diseases9 will this new genetic information be seen in its proper perspective. Clearly, if we all live with a certain level of genetically determined risk of developing one disease or another, then we should also recognize that such possibilities are integral to our biological nature and part of what it means to be human. The Human Meanings of Genetic Information In the days before modern genetic testing, a diagnosis of Tay-Sachs disease or Down syndrome was usually made in infancy, while Duchenne muscular dystrophy was diagnosed later in the first decade of life. Huntington’s disease was not usually recognized until the later decades of life. With cases of Duchenne muscular dystrophy, this condition was usually identified in boys between the ages of three and six years, when signs of muscle weakness became obvious.10 At this stage a child is already well established socially as an individual, with a personality and a defined place within a web of family and community relationships. In such situations, affected individuals, their parents and family, and their friends are called upon to develop an understanding of human life that incorporates the reality of serious disease. Although our society has a far from perfect record in the care of the sick and disabled, we recognize the many examples of individuals and communities fashioning lives of joy and dignity despite the significant problems associated with serious disease. As a society, and as people of faith, we must always be open to the challenge of reasserting our human dignity within the context of the shared joys and burdens that are integral to the human condition. Some Future Challenges If properly directed, the medical use of new genetic information should promote human health and flourishing by stimulating the development of drugs and therapies for diseases for which effective treatments are

22 Robert Allore

presently unavailable. Our growing understanding of the role of genetics in health and disease will continue to change medical practice and even challenge some of our traditional concepts of human disease. Improved access to genetic information is likely to give rise to an increasing demand for genetic testing and counselling. As with other developments in medicine, this new era of genetic information will bring with it the need to make difficult medical choices about issues over which we once had no control. The development of new genetics-based techniques for the diagnosis and treatment of human disease brings with it the need to be aware of potential problems associated with new medical technologies. The risks associated with the development, testing, and use of new vaccines and gene-therapy protocols will require careful monitoring through attention to appropriate guidelines. Similarly, proposals to use transgenic animals as a source of organs for transplantation into humans must be scrutinized to determine the likelihood of diseases crossing species barriers and creating new human epidemics. Information gained through genome-sequencing projects and the genetic analysis of human disease should enhance our understanding of the common genetic history and the shared future of our human race. Acknowledging the collective character of the human journey, we are encouraged to place the tools of modern genetics at the service of human health and the flourishing of all members of society. The great potential of new genetic technologies raises the particular challenge of directing these new developments to the treatment of diseases prevalent in many developing nations. Recognizing the fundamental dignity and equality of all human beings, we should feel compelled to respond in love, in work, and in prayer, and to support social policies promoting universal access to the goods of our modern society. Our appreciation for the potential goods of modern medicine and the connections that bind us together as a human community also invite us to a greater awareness of the ways in which God’s Kingdom has broken into this world.

NOTES 1 David Suzuki and Peter Knudtson, Genethics: The Clash between the New Genetics and Human Values (Cambridge, MA: Harvard University Press, 1989) 20– 27. Daniel J. Kevles, ‘Eugenics and Human Rights,’ British Medical Journal

Response 23

2 3 4

5 6

7

8

9 10

319/7207 (1999) 435–8. David Micklos and Elof Carlson, ‘Engineering American Society: The Lesson of Eugenics,’ Nature Reviews Genetics 1 (2000) 153–8. Robert Proctor, Racial Hygiene: Medicine under the Nazis (Cambridge, MA: Harvard University Press, 1988). Julian Huxley, Heredity, East and West: Lysenko and World Science (New York: Henry Schuman, 1949). Declan Butler, ‘Eugenics Scandal Reveals Silence of Swedish Scientists,’ Nature 389/6646 (1997) 9. Dennis Normile, ‘Geneticists Debate Eugenics and China’s Infant Health Law,’ Science 281/5380 (1998) 1118–19. Garland E. Allen, ‘Is a New Eugenics Afoot?’ Science 294/5540 (2001) 59–61. S.D. Bentley, K.F. Chater, A.M. Cerdeño-Tarraga, et al., ‘Complete Genome Sequence of the Model Actinomycete Streptomyces coelicolor A3(2),’ Nature 417/6885 (2002) 141–7. Sayda M. Elbashir, Jens Haboth, Winfried Lendeckel, et al., ‘Duplexes of 21nucleotide RNAs Mediate RNA Interference in Cultured Mammalian Cells,’ Nature 411/6836 (2001) 494–8. Kathy L. Hudson, Karen H. Rothenberg, Lori B. Andrews, et al., ‘Genetic Discrimination and Health Insurance: An Urgent Need for Reform,’ Science 270/5235 (1995) 391–3. Francis Collins, ‘Human Genetics: Where Do We Stand?’ Origins 26/28 (1997) 467. Arthur Robinson and Mary G. Linden, Clinical Genetics Handbook, 2nd edition (Boston: Blackwell Scientific Publications, 1993) 192.

RESPONSE: Anne Summers As I think is evident from Allore’s paper, ‘Research in Human Genetics: Technology, Information, Therapeutic Promise, and Challenge,’ genetic technology has huge potential for improving the overall health of human beings. We are beginning to see a future in which many diseases that are currently lethal or hopeless will be treatable, if not curable. Even infectious diseases, such as malaria, will be treated using DNA technology. On the other hand, Allore points out that DNA technology has enormous potential for abuse. This is the case with most scientific discoveries, but the potential is perhaps even greater with DNA technology. In this brief response, I will touch on three areas covered in Allore’s paper: genetic testing, the impact of genetic technology, and traditional

24 Anne Summers

concepts of health and disease. Because I am a physician and not a philosopher, I will discuss these less from the societal and more from the individual’s point of view. Genetic Testing Case Study 1 John is 26. His 28-year-old brother, James, has recently been diagnosed with colon cancer. Their father died of colon cancer at age 39. Since John is concerned about his own risk, he asks his family physician for a referral to a genetics clinic. At the genetics clinic, the counsellor explains to John that his family is eligible for testing. However, testing would have to start with James. John is reluctant to ask his brother, but because he and his new wife are considering starting a family, he decides to raise the subject with James. James readily agrees to participate and is found to have an MSH2 gene mutation that is consistent with the family history of colon cancer. John then is tested and the test indicates that he does not have the mutation. He and his wife have a healthy daughter 14 months later. John and James’s younger brother, Paul, learns of James’s result and requests testing. Paul has always been healthy, has had no surveillance, and hasn’t thought much about either colon cancer or his health in general. He is counselled about the potential medical and psychosocial effects of testing. He seems to understand and is eager to proceed. Testing shows that he carries the same mutation as James. He is told that this mutation is associated with an 80 per cent chance of developing colon cancer in his lifetime (compared with the population risk of 6 per cent). He is referred to a gastroenterologist for colonoscopy. Although the exam result is normal, Paul becomes extremely anxious about developing cancer and requests a second opinion. The second colonoscopy also indicates that everything is normal, but the result doesn’t seem to relieve his anxiety, and his family reports that he spends hours searching the Internet for possible ways to prevent colon cancer. His family physician suggests a referral to a psychiatrist. The psychiatrist provides treatment for about a year. Paul’s anxiety slowly abates, but is heightened for the two weeks before each colonoscopy appointment.

Allore points out that genetic testing can be both helpful and harmful to persons at risk for a particular disorder. As can be seen from the

Response 25

above vignette, testing can help with life decisions. The most commonly cited reasons for genetic testing are probably disease surveillance and family planning, but there can be a variety of other reasons, such as employment and education decisions, or financial and retirement planning. If a person has inherited a disease that could potentially shorten his or her life, or result in a decreased quality of life, knowledge of this information may allow the person to plan his or her future to some degree. However, such information can also have negative consequences. These may be psychological, as in the case of Paul. One wonders if he would have been better off without the information that he carries this gene. He could have had surveillance for colon cancer without having the DNA testing. There can also be social consequences. After genetic testing, a person may not be considered a reasonable candidate for insurance, employment, education, relationships, or parenthood. Prejudices can be external or even from within the family. Take Paul’s situation a step further. Suppose he now applies for insurance. The fact that he has an 80 per cent chance of developing cancer means that he will probably be denied insurance. The situation of Paul’s brother, John, implies that John and his wife would consider themselves less likely (less worthy) to have children if John had the family mutation. How, then, would they view Paul if he decides to have children? The Impact of Genetic Technology In his paper, Allore says, ‘The rising popularity of genetic tests may also feed the illusion that the tools of modern genetics offer us complete knowledge of human biology, a knowledge that opens up the possibility of controlling our destiny.’ This point is significant, both on an individual level and on the general level of human biology. The scenario of John, James, and Paul illustrates this point to some degree. Suppose John turned out to be a gene carrier: Ought he decide to have a vasectomy so that he can’t pass on this gene? Many would believe this to be a responsible action. But is it? Could John have fathered the next Einstein or Mozart? Could a cure for colon cancer be developed in the next 20 years – before the child has actually developed the cancer? Could that child have been the person to develop the cure? Could the decision not to have children destroy John’s marriage and affect his own or his wife’s productivity?

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The view that John must do all he can not to pass on his ‘bad’ gene springs from the view that he is to be defined in terms of one factor: his gene. This narrow view could have unforeseeable ramifications and, more important, it reduces both a person’s worth and the humanity of those who see that person exclusively in these narrow terms. A person is not the sum of his or her genes. Little thought is given to the eugenic nature of this attitude. In addition, if we hold this attitude, how will persons who are ‘less than perfect’ be respected or even tolerated within our society? Traditional Concepts of Health and Disease Case Study 2 David is two months old. He has been sent to see a geneticist because he has a condition called dextrocardia, which means his heart is on the right side of his chest instead of the left. Dextrocardia can be associated with a number of other heart defects and congenital anomalies, but David is otherwise perfectly normal. The geneticist reassures his parents that David is a normal, healthy baby. She mentions that there may be a chance of their having another baby with the same problem, and that David could possibly have children with dextrocardia. The parents are devastated by David’s ‘imperfection.’ They tell the geneticist that they will definitely want prenatal diagnosis for any future pregnancy and will terminate that pregnancy if the unborn baby has dextrocardia, even if he or she appears otherwise normal.

Allore says, ‘Our growing understanding of the role of genetics in health and disease will continue to change medical practice and even challenge some of our traditional concepts of human disease.’ So far we have not really had to draw a line between what we would call disease and what we would call normal, but this is an issue we will have to face. Currently, we deal with healthy people who carry genes for disorders such as Huntington’s disease or breast cancer; information, not a change in their health, is making them into patients. However, this scenario does raise a more fundamental question: where is the line between wellness and illness? Of even more concern is the question of whether we test for traits that we do not consider health-related. Baby David has dextrocardia. There is some rationale for testing for dextrocardia because of potential related findings. But what if David’s parents wanted only tall children and asked us to test for height?

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Conclusion Allore’s paper has highlighted both the positive and negative aspects of genetic technology. My response introduces the concept of balance. Genetic technology is part of our lives and will undoubtedly have a very positive impact on human health. But we must learn to recognize the pitfalls and the circumstances in which this technology may threaten our worth as human beings.

2 Clinical Applications of Research in Human Genetics christine e. jamieson

Genetics is the branch of science dealing with heredity and the variation of inherited characteristics in living organisms. Since the inception of the multinational Human Genome Project (HGP), whose goal is to map the human genome, scientific and medical knowledge about human genetics has grown exponentially. In June 2000, the HGP announced the completion of a draft sequence of the human genome. The benefit of this new knowledge includes a deeper understanding of the person, of the genetic component of disease, and of possible correctives to hereditary diseases. The increasing accuracy and proliferation of genetic screening and testing are concrete manifestations resulting from mapping the human genome. Genetic testing and screening are increasing our ability to understand and treat disease, altering our understanding of the causes of disease, and creating new challenges in health care delivery. In this paper, I undertake two major tasks. The first and more extensive task is to describe the current state of genetic testing, screening, counselling, and diagnosis. Thus, after explaining the important distinction between genetic testing and genetic screening, I consider the state of both, their psychological effects, and the role of genetic counselling in addressing these effects. The second task is to identify some pressing ethical issues arising from genetic testing and genetic screening. PART I Important Distinctions Although the terms ‘genetic testing’ and ‘genetic screening’ are often

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used interchangeably, there are important distinctions between the two. There also are important distinctions within each category. 1 Genetic Screening The key difference between genetic screening and genetic testing is in the approach. Genetic screening is initiated by a health professional and is concerned with the general population or with specific subpopulations identified because of high health risks. The following are three distinct types of genetic screening: 1 Presymptomatic screening. The goal of presymptomatic screening is to identify those who have a specific gene abnormality, which, although currently asymptomatic, will eventually manifest as a disease. Examples of such conditions are cystic fibrosis, Duchenne-type muscular dystrophy, and Huntington’s disease. Those who test positive in presymptomatic screening will certainly develop the disease; however, it is uncertain when it will develop and how severe it will be. 2 Susceptibility screening. Here, the goal is to find mutations that increase the risk of developing common diseases such as cancer and heart disease. This type of test does not provide conclusive evidence about the eventual manifestation of a disease. Rather, a positive result merely indicates heightened susceptibility to certain diseases. 3 Carrier screening. This type of genetic screening identifies those who carry one affected recessive gene. A person testing positive will not develop the disease but may pass it on to his or her children. Genetic Testing A genetic test aims to detect the presence or absence of, or alteration in, a particular gene, chromosome, or gene product in relation to a genetic disorder. Unlike genetic screening, a genetic test is conducted at the initiative of the patient or parent. There are various types of genetic tests, which can be differentiated according to when or why they are used. 1 Prenatal diagnosis. As the name indicates, this test is conducted before birth to determine whether a fetus has a genetic disorder, or is at risk for developing a genetic disorder. 2 Newborn testing. This test seeks to identify metabolic disorders in newborns. Often early treatment is crucial to inhibiting the progression of the disease.

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3 Presymptomatic testing. As with genetic screening, these tests are carried out on healthy people to determine whether they carry a genetic mutation. A positive result indicates that the person either has an increased likelihood of developing a genetic condition or will definitely develop the genetic condition. 4 Diagnostic genetic testing. The goal of this test is to confirm a particular diagnosis. 5 Carrier testing. The goal of this genetic test is to identify those who carry one copy of a recessive genetic disorder. A positive result means the genetic disorder may be passed on to offspring. This test is taken to assist in reproductive decisions. 6 Susceptibility testing. The genetic mutation that this test identifies indicates a person’s susceptibility to developing certain diseases or to developing a disease when exposed to certain environmental hazards. Lemmens and Austin point out that susceptibility testing can also refer to ‘tests that aim at identifying whether a person will likely respond well to a particular drug, or suffer more severe side effects,’ and they add that ‘this new research area, pharmacogenomics, offers the prospect of more individually tailored drug treatments.’2 The State of Genetic Testing and Screening There is an optimistic belief that genetic research is the most vital and important area in medical research. Feeding this optimism is the fact that genes associated with disease are rapidly being identified and, once they are identified, new diagnostics, predictive testing, and treatments can be pursued. An estimated 60 per cent of Canadians will, at some point in their lives, experience a disease with a genetic component.3 Currently, approximately 5,000 diseases are known to have a genetic component. Of these, approximately 1,000 disease-associated markers or genes have been isolated, and in all likelihood this number will continue to increase.4 While the research focus has been on single gene disorders (diseases that are rare but fairly easy research targets), the identification of genes for common diseases is now emerging as an area of greater significance. Sets of genes, not single genes, are implicated in many common diseases, including heart disease, cancer, hypertension, and mental illness. The current rapid pace of development in human genetics will increasingly extend predictive testing into a wide range of common illnesses and conditions, such as cancer, respiratory diseases, cardiovascular disorders, diabetes, alcoholism, and schizophrenia.

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This area of research, which identifies variations within specific genes that cause or predispose one to disease, may shift our current reactive health care system to one in which early diagnosis and directive genetic counselling will predominate. As research in human genetics progresses, and genetic testing becomes more accurate and more accessible, the impact on health services delivery will become more pronounced. We will see better strategies for preventing, detecting, treating, and managing disease.5 Some scientists predict that, within the next five to ten years, most genetic factors involved in human diseases will be defined. ‘This information will form an important template for redefining disease, clarifying biological mechanisms responsible for disease, and developing new treatments for most disorders.’6 The massive investment of huge pharmaceutical companies in ‘bioinformatics’7 reflects the pervasive belief that drug development based on genetic guidelines will be the earliest, and probably most frequent, response to the current proliferation of disease diagnosis evolving from the mapping of the human genome. Gene mapping will facilitate the development of medicine tailored to the individual. The combination of genetic research and drug development will mean a more accurate response to an individual’s specific disease and reduced side effects. Along with the valid optimism in response to rapid developments in genetic testing, there are some serious concerns. The accelerated rate at which tests are being developed, and the pressure to introduce them into clinical practice, may undermine the need for rigorous evaluation of both DNA diagnostics and pharmacogenomics. As we learn more about genetic disorders, the pressure for genetic testing will be heightened. But the need for more testing research – because of the potential for false positives (positive results when, in fact, people do not have the genetic anomaly for which they were tested), and false negatives (negative results when, in fact, people do have the genetic anomaly for which they were tested) – may be ignored under this pressure. Another important fact about the proliferation of tests for either the present or future manifestation of diseases is that the immediate benefits of genetic testing are minimal. Perhaps most significant is the fact that treatments are not forthcoming for the diseases identified by genetic testing. While the numbers of genetic tests continue to grow fairly rapidly, treatments for the diseases they identify do not. For example, Huntington’s disease (HD), the first completely dominant human genetic disease to come to light, is one of the first diseases of genetic origin for which presymptomatic testing became available. There is, how-

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ever, no cure for HD. The fact that effective methods to prevent the appearance of genetic diseases, such as HD, or to treat them when they do appear, are often not available poses one of the biggest challenges in genetic testing. This challenge has already thrust us into a post-genome era where, increasingly, the limitations of DNA-based genetic tests are emerging alongside their potential benefits. Our ability to use the information gleaned from our incredibly sophisticated knowledge of the human genome is lagging significantly.8 Psychological Effects of Genetic Testing and Screening While the psychological consequences of various types of genetic screening and testing require extensive study and analysis,9 we can identify specific psychological responses that affect people who seek genetic testing. These responses can result from positive test results, negative test results, or the decision not to have genetic testing even though it has been advised. In each of these categories, both psychological benefits and risks are involved. Common psychological impacts or reactions to genetic testing are anxiety and distress, depression, guilt, an altered self-image, an altered relationship with the family, a need for support, a need to make life choices, and an overestimation of risk. Anxiety and distress. Clearly, people dealing with the prospect of genetic testing experience heightened levels of anxiety and distress. The nature of the disease also has been noted to affect the level of anxiety. For example, a person being tested for HD generally suffers from higher levels of anxiety than a person being tested for colon cancer. Another factor that influences the level of distress is experience with the disease. If a person had a parent or another loved one who suffered from the disease, this experience will influence the reaction to his or her own genetic status.10 Likewise, people who have no experience with a disease and had no inkling of their at-risk status may experience higher levels of anxiety and distress than someone who has lived for a long time with knowledge of the disease. Depression. Often, depression is a more long-term effect of predictive genetic testing. Depression can affect even someone who is mentally prepared for a positive test result. Unexpectedly, at times even those who receive a negative result from predictive genetic testing experience profound depression. There are many possible reasons for this, all of

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which are no doubt tied up with self-image and expectations for the future. Guilt. Guilt is another significant psychological response to genetic testing. As with depression and anxiety, guilt can take a number of forms. For example, some people ‘experience “survivor’s guilt,” similar to that of soldiers whose buddies have died in war, as they wonder why they have been spared when other family members tragically have inherited the gene.’11 People can experience guilt because they have the mutation, especially if their children have inherited the disorder or the atrisk status. Altered self-image. Very often, self-image is acutely affected by genetic disorders. ‘Because genes are usually viewed as immutable and central to the determination of who a person is, information about genetic mutations may cause a person to change his or her self-perception and may also alter the way others treat that person.’12 A person’s sense of self may be significantly shaken when he or she receives the results of a genetic test. The results may affect the person’s sense of self-worth and security. People may see themselves as ‘marked,’ or experience their own bodies as somehow foreign. And, as already indicated, an identity crisis is not necessarily restricted to those who test positive. Often, because someone has lived for a long time under the shadow of a genetic disease, learning that they did not inherit the disease can precipitate an uncertain sense of identity.13 Relationship with the family. Many dimensions of family relationships are affected by predictive genetic testing. For example, testing may disrupt previously harmonious family dynamics or help previously discordant family members to come together. Particularly significant is the effect of prenatal genetic testing on parents. Discovering a fetus’s at-risk status can have an impact on each parent’s emotional well-being and sense of self. In addition, a parent may discover his or her own genetic status through prenatal testing. Thus, ‘if the disorder is a dominant late-onset untreatable disorder such as Huntington’s disease, at-risk parents “hear their own death knell with that of their child.”’14 Genetic testing often causes people to relive previously difficult experiences with affected loved ones. In one study, ‘noncarriers reported that the result had activated the past and that they were overwhelmed by early experiences with Huntington’s disease in the affected parent.’15

34 Christine E. Jamieson

Genetic information also can complicate intimate relationships. What is the proper protocol with a potential spouse? Is a person obligated to reveal his or her at-risk status? At times, such information will end a relationship. This will have tremendous psychological consequences for the at-risk person. Will a person’s at-risk status cause a partner to view him or her differently? There is evidence that a person’s capacity for intimacy is affected by genetic knowledge. Many couples experience increased stress when one partner receives positive results from genetic testing.16 Foundational relationships can be disrupted by predictive genetic testing. The use of genetic services can cause people to lose their internal moorings, to view themselves in a different way. It can also make conditional some of the previous unconditionals in relationships, creating fault lines in the very foundation of people’s lives.17 Need for support. Psychological distress in response to test results decreases with increased social support. Supportive families or partners significantly increase a person’s capacity to cope with both positive and negative test results. Because of this, some studies have emphasized the importance of the involvement of partners and other family members in pretest genetic counselling. This will help genetic counsellors gauge more accurately a person’s response to a test result.18 Life choices. Life choices are significantly affected by a person’s experience of being at risk. Often, people who have lived with a parent’s genetic disease will experience themselves as at risk not only for the disease, but for other negative things as well. They also will be more likely to experience the future with a sense of foreboding or gloom. ‘A study of the daughters of women with breast cancer found that the daughters had less confidence that their internal and external environments would be predictable and that things would most likely work out as well as could be expected.’19 As we saw earlier, a person’s perception of his or her at-risk status can be inaccurate, but it will nonetheless affect life choices. Learning that one has not inherited a genetic mutation can be devastating if a person has made life choices, such as deciding not to have children, in anticipation of developing the disease. Overestimation of risk. There is much evidence that people from families with genetic diseases overestimate their own risk. Statistics might show

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that, in fact, the risk is low or even minimal, and yet a person will still believe, with near certainty, that he or she has the mutation. As Lori Andrews writes in Future Perfect: ‘When the risk estimates made by women in high-risk groups were compared to a mathematical model, it became clear that the women were overestimating their cancer risks: 43% rated their risk of having a BRCA1 or BRCA2 mutation as between 76 and 100%, but the model estimated that only 26% had that high a risk of having the mutation. The average difference between the women’s estimates and the model estimate was 32%.’20 Genetic Counselling People and families who face the intrusion of genetic disease experience increased vulnerability. A unique characteristic of genetic disorders is that the experience of vulnerability does not begin with the onset of the disease. Rather, for many it begins when they learn that there is a genetic disorder in the family. While genetic testing offers many benefits in terms of accurate risk assessment and preventive strategies, uncertainty underlies most tests – uncertainty about ‘whether a condition will develop, when it will develop, and how severe it will be.’21 It is precisely this degree of uncertainty, along with the unique preferences, needs, and experiences of people and families at risk of genetic diseases, which requires special attention. For this reason, genetic counselling is significant. Genetic counselling is a process of consultation by which information is imparted to people or families affected by or at risk for a genetic disorder. Genetic counselling includes providing information on the nature of the disorder; the size and the extent of genetic risks; the options, including genetic testing, that may help clarify the risks; and the available preventive and therapeutic measures. Genetic counsellors also provide psychological, social, and practical support. In the context of genetic testing, counselling may include responding to the concerns of referred people and their families, discussing the consequences of a test, and enabling individuals and families to make the optimal decision for themselves, but not determining a particular course of action for them. The consensus is that testing should be done only when counselling is provided. Counselling must include information about the pros and cons of testing. In addition, formal psychological support must be available. A key benefit of counselling is the provision of information crucial to the decision of whether to undergo testing. People seek testing for a

36 Christine E. Jamieson

variety of reasons, and there is a direct correlation between the impact of the results and the reason for testing. Thus, pre-test counselling is highly important. Counselling provides a crucial educational component that is overlooked in the media coverage of genetic discoveries. Often the popular media present the ‘illusion that genetic risk is highly predictable and determinate,’ when, ‘in fact, uncertainties inherent in most genetic tests represent a major limitation to their clinical utility.’ Investigators also have noted that the perception of people regarding the usefulness of predictive genetic testing often varies ‘depending on whether other close relatives have died of the disease,’ or depending on a person’s ‘own family structure.’22 Summary of Part I In Part I, we considered the state of research and its application to genetic testing and genetic screening. We also briefly explored common psychological impacts of genetic disease, and both the positive and negative implications of genetic testing. This exploration led us to consider the role of genetic counselling and its importance in providing crucial information to at-risk people. PART II. Ethical Issues Arising from Genetic Testing or Screening As we saw in Part I, advances in the HGP are expanding the number of genetic tests available, not only for the relatively rare recessive and dominant mendelian genetic disorders, but also for genetic susceptibility to the more common polygenic and multifactorial diseases, such as cancer, diabetes, atherosclerosis, cardiovascular disease, and psychiatric disorders. However, effective methods to prevent the appearance of these diseases, or to treat them when they do appear, are often unavailable. This is one of the biggest challenges in genetic testing and genetic screening. It raises key ethical concerns that need exploration. In Part II of this paper, five ethical issues arising from genetic testing or screening are identified. 1 Stigmatization of and discrimination against the affected person and even that person’s family Even though there is a fair amount of uncertainty about the predictive power of most genetic tests because of false positives and false negatives, variable expressivity, incomplete penetrance, and variable

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time of onset, genetic testing poses a threat to autonomy. The concern over disclosure of genetic information is due to concern about possible stigmatization of and discrimination against the affected person, and even that person’s family, by employers, insurance companies, educational institutions, or some other organization or person. This is particularly troubling because a person may not develop symptoms for many years, or may die of causes that have nothing to do with a genetic disease. 2 Genetic determinism Genetic information has the power to influence our understanding of disease and can encourage us to take a reductionist view of disease (i.e., to consider diseases to be caused by genetic foul-ups, and therefore to ignore environmental and socio-economic factors). One might question, however, society’s understanding of what is normal, or what is purported to be a life worth living. One might question unexamined assertions about health and disease and whether, as some might lead us to believe, the world would be better off without certain disabling diseases. If a person discovers that he or she will develop HD later in life, what is the value of that life? In a recent article, Patricia Baird considers the contribution of genetic knowledge to health in the years ahead. She is critical of the overly naive interpretation often put on genetic research findings in our society,23 and sees that this interpretation will have detrimental effects on future health and social policies. In essence, Baird is critical of a form of genetic determinism. In the midst of the rapid advances of the HGP, health is being viewed more and more exclusively through the lens of the genetic make-up of human beings. Yet Baird insists that ‘the evidence is overwhelming that the determinants of the common chronic diseases of modern life are complex, interrelated, act over time and are embedded in a social context.’24 3 Eugenics and unexamined assertions about health and disease The issue of eugenics sometimes rears its head, especially in relation to prenatal genetic testing. One might question the difference between desiring healthy children and reducing the number of ‘defective’ babies,25 or, in some cases, the number of future defective adults. Prenatal diagnosis is one matter, but what is the relationship between this goal of prenatal diagnosis and prenatal genetic testing for late-onset diseases? Prenatal genetic testing for late-onset diseases

38 Christine E. Jamieson

provides parents with the option of having a child free of a genetic disorder. One question is whether there is a relationship between this option and eugenics.26 If a disease or disability can be avoided, will there not inevitably be pressure to rid the world of these undesirable traits? One of the major problems here is that testing for a particular disease often comes many years before a treatment is developed, or there may be no intention of developing a treatment. 4 The importance of informed choice based on knowledge of risks, benefits, effectiveness, and alternatives to testing The rapid advances in diagnostic tools for genetic testing are challenging the physician’s ability to perform his or her important role of informing, advising, and supporting the patient. Often the primary care physician is the main, if not the only, source of assistance for potential parents who must make reproductive decisions when there is a susceptibility to inherited diseases. Clearly, medical practitioners need to be better educated and trained in genetics and biotechnology so that they can both serve their patients and provide them with enough relevant information to make an informed choice. Informed choice is a significantly broader concept than informed consent. It admits the possibility that a patient may give an informed refusal. It addresses the problem of persuasive measures employed by the physician, the public health care system, or society in general. It addresses, more broadly, the importance of ensuring respect for the integrity and inviolability of the person. Because of multiple social and ethical implications, awareness of this distinction and the provision of the means for patients to make an informed choice are even more urgent in genetic testing. Clinical genetics is inseparable from decisionmaking. The publicity surrounding the HGP, as well as the ongoing identification of the genes supposedly causing a wide variety of diseases and other non-medical conditions, is flooding the public ‘with new and qualitatively different options ... Patients must understand the risks, benefits, effectiveness, and alternatives to testing, so they can make an informed decision.’27 5 The cultural backdrop against which health and health risk are viewed Sensitivity and complexity of the issues involved in genetic testing may be heightened in the face of cultural diversity. Researchers, counsellors, and others involved in genetic testing need ‘to focus on how at

Clinical Applications of Research in Human Genetics 39

risk individuals and their families understand hereditary risk in everyday life.’28 This need is even more pronounced for people from ethnic minority groups. Language barriers, as well as other cultural differences, can influence an understanding of the elements involved in genetic testing. Psychological difficulties arising from genetic testing may thus be intensified. Conclusion This essay provides background information on the clinical applications of research in human genetics. Specifically, it explores medical, psychological, and ethical issues related to genetic screening and genetic testing. Human genetics is a field of exploration that holds tremendous promise, and yet is causing tremendous concern. Understanding, as clearly and fully as possible, the data of human genetics and their implications is necessary if genetic research is to promote the flourishing, not decline, of humankind.

NOTES 1 See Trudo Lemmens and Lisa Austin, ‘The Challenges of Regulating the Use of Genetic Information,’ Isuma: Canadian Journal of Policy Research 2/3 (2001) 26–37. Denise Avard and Bartha Maria Knoppers, ‘Screening and Children: Policy Issues for the New Millennium,’ ibid. 46–55. 2 Lemmens and Austin, ‘Challenges of Regulating,’ 27. 3 See Charles R. Scriver, ‘Genetic Disease: An Orphan in Canadian Health Care,’ Isuma: Canadian Journal of Policy Research 2/3 (2001) 113–18. 4 Stephen Scherer, ‘The Human Genome Project,’ Isuma: Canadian Journal of Policy Research 2/3 (2001) 11–19. See p. 16. 5 Fredrick D. Ashbury and Cathy Cameron, Principles and Lessons Learned to Develop and Disseminate Genetic Testing Educational Information to the Public, Patients and Primary Care Providers for Late Onset Diseases: A Review of the Literature (Ottawa, ON: Health Systems Division, Health Promotion and Programs Branch, Health Canada, 2001) 1. 6 John Bell, ‘The New Genetics in Clinical Practice,’ British Medical Journal 316/7131 (1998) 618. 7 Ken Howard, ‘The Bioinformatics Gold Rush,’ Scientific American 283/1 (2000) 58–63.

40 Christine E. Jamieson 8 Mike Gill and Tessa Richards, ‘Meeting the Challenge of Genetic Advance Requires Rigorous Navigation between Laboratory, Clinic, and Society,’ British Medical Journal 316/7131 (1998) 570. 9 Andrew Baum, Andrea L. Freidman, and Sandra G. Zakowski, ‘Stress and Genetic Testing for Disease Risk,’ Health Psychology 16/1 (1997) 8–19. 10 A.C. DudokdeWit, Aad Tibben, Hugo J. Duivenvoorden, et al. (The Rotterdam/Leiden Genetics Workshop), ‘Psychological Distress in Applicants for Predictive DNA Testing for Autosomal Dominant, Heritable, Late Onset Disorders,’ Journal of Medical Genetics 34 (1997) 382–90. 11 Lori B. Andrews, Future Perfect: Confronting Decisions about Genetics (New York: Columbia University Press, 2001) 36. 12 Ibid., 5. 13 Marlene Huggins, Maurice Bloch, Sandi Wiggins, Shelin Adam, et al., ‘Predictive Testing for Huntington Disease in Canada: Adverse Effects and Unexpected Results in Those Receiving a Decreased Risk,’ American Journal of Medical Genetics 42/4 (1992) 508–15. 14 Andrews, Future Perfect, 40. 15 Aad Tibben, Reinier Timman, Erna C. Bannink, and Hugo J. Duivenvoorden, ‘Three-Year Follow-Up after Presymptomatic Testing for Huntington’s Disease in Tested Individuals and Partners,’ Health Psychology 16/1 (1997) 22. 16 Kimberly A. Quaid and Melissa K. Wesson, ‘Exploration of the Effects for Predictive Testing for Huntington Disease on Intimate Relationships,’ American Journal of Medical Genetics 57/1 (1995) 46–51. 17 Andrews, Future Perfect, 55. 18 Sally W. Vernon, Ellen R. Gitz, Susan K. Peterson, Christopher I. Amos, et al., ‘Correlates of Psychologic Distress in Colorectal Cancer Patients Undergoing Genetic Testing for Hereditary Colon Cancer,’ Health Psychology 16/1 (1997) 73–86. Aad Tibben, Hugo J. Duivenvoorden, Maria Vegter-van der Vlis, Martinus F. Niermeijer, et al., ‘Presymptomatic DNA Testing for Huntington Disease: Identifying the Need for Psychological Intervention,’ American Journal of Medical Genetics 48/3 (1993) 137–44. 19 Andrews, Future Perfect, 32. 20 Ibid., 33. 21 James P. Evans, Cecile Skrzynia, and Wylie Burke, ‘The Complexities of Predictive Genetic Testing,’ British Medical Journal 322/7293 (2001) 1052. 22 Ibid., 1053, 1055. 23 Patricia Baird, ‘Will Genetics Be Used Wisely?’ Isuma: Canadian Journal of Policy Research 2/1 (2001) 95. 24 Ibid.

Response 41 25 David J. Roy, John R. Williams, and Bernard M. Dickens, Bioethics in Canada (Scarborough, ON: Prentice-Hall, 1994) 169. 26 Ibid., 187–9. 27 Michael B. Decter, Four Strong Winds: Understanding the Growing Challenges to Health Care (Toronto: Stoddart, 2000) 276. 28 Susan M.Cox and William McKellin, ‘“There’s This Thing in Our Family”: Predictive Testing and the Construction of Risk for Huntington Disease,’ Sociology of Health Illness 21/5 (1999) 623.

RESPONSE: Jaro Kotalik Major Concerns about the Ethics of Genetic Technology In my view, the most troublesome of all the ethical issues in genetic screening and testing, as described by Dr. Jamieson, are found under the subheading ‘Eugenics and unexamined assertions about health and disease.’ This is because genetic screening and testing have the potential, and an already demonstrated capability, to be a major controlling influence on human procreation. Two ways in which this can happen are the selective elimination of unborn human beings and the selective avoidance of procreation. Such elimination can have one of several forms. One is selective abortion, carried out if a genetic abnormality of the fetus is diagnosed or suspected. For example, screening of the serum of pregnant women in order to identify Down syndrome and several other disorders is already widely used across Canada and paid for by public funds. If a fetal abnormality is confirmed, the woman is counselled that she has the choice either to continue the pregnancy or to obtain an abortion; the majority of women choose the latter. As new genes are discovered and the predictive power of related biochemical and genetic testing improves screening may also identify genetic abnormalities that increase the susceptibility to, although not the certain occurrence of, certain common disorders such as breast cancer or Alzheimer’s disease. Eventually, these tests may also identify unborn offspring who cannot develop the disease themselves, but would be passing certain genetic on mutations to the next generation. In addition to the ethical concerns involved in all abortions, selective abortions carried out for these reasons pose other troublesome questions. Would the notion of pregnancy as an ever-tentative condition

42 Jaro Kotalik

change the nature of motherhood and fatherhood and affect the way in which the next generation is raised? Would the ‘tyranny of the normal’1 gradually force women to abort fetuses with fewer and less-severe abnormalities as the technology of genetic testing advances? If it is now allowable to eliminate a fetus with Down syndrome, would we later also eliminate all unborn children with cleft palate, with colour-blindness, with a propensity to left-handedness, with an increased risk of developing cancer, or with albino features? Would the elimination of all Down syndrome children be a loss or a benefit to humanity? Stephen Post raises the issue in a general way when he asks, ‘Is having a disease such as Alzheimer’s disease a sufficient moral (in contrast to legal) ground for abortion, even though the eventual sufferer will have many decades of good and unimpaired living?’2 Some people will argue that it is always better to bring healthy children into the world rather than children with a handicap, an increased probability of physical suffering, or a limited life span. Eike-Henner Kluge, for example, argues that abortion is an appropriate preventive measure when carried out to prevent the birth of an infant with a serious genetically determined condition because it prevents an injury from becoming complete when the fetus is born. According to Kluge, such an act does not harm a person and it does not imply that those persons who do live with this handicap are worthless.3 In contrast, Leon Kass expresses the view that screening which leads to the elimination of genetically different unborn children is a serious blow to the important notion of the ‘radical moral equality of all human beings.’4 Objections to such interventions can arise also from the common observation that those who live with disability and suffering can still have a rich, meaningful, and creative life. More than that, as Jean Vanier pointed out, disabled children and adults make a contribution to our world by making us more humane and whole, if we accept them as our teachers.5 The other way in which genetic screening and testing can exercise dominant control over procreation is by inducing women (and couples) to avoid conception if there is a risk that a child would have an unfavourable genetic trait.6 The long-term impact of many such individual reproductive decisions on society could be similar to the impact of selective abortions. Decisions to have or not to have offspring are often considered personal, beyond the scrutiny of other moral agents. But some scholars also see a moral obligation here. Joseph Fletcher, for example, proposed that we have a duty to the unborn to engage in genetic screen-

Response 43

ing, and that couples who are at high risk of having progeny with a debilitating gene have a moral duty not to procreate.7 Thomas Murray suggests that the current concept of procreative liberty needs to be enriched by taking into account the interests of children and the relationship between parents and children.8 Another group of ethical issues described by Dr Jamieson includes privacy, confidentiality, discrimination, and the stigmatization of persons or families with genetic abnormalities. For the time being, I am less concerned about these issues. First, there is already consensus that discrimination on a genetic basis in employment and insurance is unacceptable. Our society, now dominated by a liberal political philosophy, is well equipped to develop legal and administrative mechanisms to minimize these dangers. Second, as the range of genetic testing expands and a higher fraction of the population becomes involved, the uniqueness of carrying an unfavourable trait will disappear. It is more likely that every tested person will be found to have a genetic susceptibility to one disease or another. Transfer of Genetic Research to Practice Given that various applications of genetic technology in various settings may have a vastly different ratio of benefits and burdens, it seems essential to ensure that the technologies moved from research to clinical practice are ethically appropriate. A number of regulatory groups could ensure that this happens, but each has distinct limitations. On the one hand, regulatory agencies of governments are responsible for the protection of the population, but they also have an interest in the international competition for a share in the biotechnology market. For example, one official report states that actions under consideration are those that would ‘better prepare both health care and society for the impact of genetics.’9 The attitude displayed in the report is that the march of technology is uncontrollable. The possibility of discriminating between a technology that is clearly beneficial and should be encouraged, and a technology that is likely to be harmful and ought to be stopped, is not even acknowledged. Organized health care professions are other agents who can influence the selective transfer of genetic research into practice based on ethical criteria. Through their continued use of guidelines and standards for clinical care, there is the possibility that at least the worst use of genetic technology may be curtailed. But researchers who build their personal

44 Jaro Kotalik

careers on certain genetic discoveries, and often have prominent positions on expert panels, can be in a position to decide if the results of this research will be incorporated into practice. Under such circumstances, it is difficult to ensure an objective, broadly based assessment of the medical and societal impact of new technology. Guided by their codes of ethics, health care professionals are the traditional protectors of the best interests of patients and clients. However, professionals themselves are subjected to relentless pressure from the industry’s sales representatives to introduce new products. In addition, patients themselves frequently ask for new tests and treatments that they see advertised. Ultimately, the individual client or patient has to make the decision to use or not to use the products of genetic research. Given that genetic screening, testing, and even gene therapy are being advertised directly to potential customers, and that genetic technology lends itself well to use by consumers without the involvement of health professionals, the consumer may become the sole decision maker in this area. However, consumers can properly decide on genetic interventions only if they are given unbiased information about the technology and its social effects. The basic issue for all these players will be to decide what overall attitude to adopt toward genetic technology. Alternative Stances to the Introduction of New Genetic Technology In North America, two polarized positions have emerged on the advances in technology in general. One position is broadly libertarian: society needs to set out only the basic rules of conduct and then give everyone freedom for an unbounded process of discovery and experimentation. Individual flourishing and individual responsibility are emphasized. Proponents of this position invite us to embrace the complex messiness of many freewheeling individual decisions and trust that freedom for researchers, and market competition among those who set out to develop practical applications by trial and error, will lead to the best overall outcome. Friedrich Hayek, Karl Popper, and Tom Peters are the best-known proponents of this approach. Unrestricted application of genetic technology was described and advocated recently by Lee Silver,10 Glenn McGee,11 and Virginia Postrel.12 The other position could be called progressively conservative, in the most general sense. It proposes that society and its leaders define the

Response 45

goals for progress, examine the specifics of new technology, develop rules for application, and keep every new development under control in order to avoid distortions and dangers and to conserve and protect certain values. While some who subscribe to this view find little to recommend in the new technology, others would be enthusiastic about the applications of scientific and social progress, as long as planning and risk control can protect essential social structures and values. The scholars who support this position are J.K. Galbraith, John Gray, and E.F. Shumacher. In the field of biotechnology, Neil Postman,13 Jeremy Rifkin,14 and Bill McKibben15 have recently defended this position. The contrast between these two positions is clearest if we compare the positions on gene therapy, with its potential to alter human nature over time. Rifkin finds such a development unacceptable and calls for a total prohibition of all interference with human genes.16 Postrel, on the other hand, rejects concerns about the integrity of genetic material and suggests that the most essential element of human nature is in fact human beings’ quest for change and transformation of the human condition.17 The middle ground between these two extreme positions is wide and has been explored by many authors. Kass, who has raised objections to many reproductive techniques, would accept gene therapy to cure diseases, but not to enhance human appearance, performance, and so on.18 But the definition of ‘disease’ is problematic; once a condition that someone dislikes can be medically ameliorated, it is labelled a disease. Francis Fukuyama seems willing to embrace many biotechnological applications to human life, but he warns against the loss of a stable human essence, which to him is the underpinning of human rights and liberal democracy.19 Michael Boylan and Kevin Brown stress the need to develop a shared community worldview and to establish binding standards for researchers and industry.20 George Grant’s life-long study of the pervasive influence of technology on people and on human society led him to believe that the classical concept of justice is threatened by scientific progress, but that neither justice nor technology should be sacrificed.21 Although many other scholars could be mentioned, none of these accounts, insightful as they are, has the power to be universally convincing. Fukuyama noted that biotechnology ‘mixes obvious benefits with subtle harms in one seamless package.’22 Some helpful advice has been given, but the complex task of unpacking genetic technology as a moral enterprise is an ongoing task.

46 Jaro Kotalik NOTES 1 Leslie A. Fiedler, ‘The Tyranny of the Normal,’ in Which Babies Shall Live? Humanistic Dimensions of Care of Imperiled Newborns, ed. Thomas H. Murray and Arthur L. Caplan (Clifton, NJ: Humana Press, 1985) 151. 2 See Stephen G. Post, ‘Genetics, Ethics, and Alzheimer Disease,’ Journal of the American Geriatric Society 42/7 (1994) 782–86. 3 Eike-Henner W. Kluge, Biomedical Ethics in a Canadian Context (Scarborough, ON: Prentice-Hall, 1992) 340–1. 4 Leon R. Kass, ‘Implications of Prenatal Diagnosis for the Human Right to Life,’ in Biomedical Ethics, ed. Thomas A. Mappes and Jane S. Zembaty (New York: McGraw-Hill, 1981) 465. 5 See Jean Vanier, Becoming Human (Toronto: Anansi, 1998). 6 At times, genetic testing may lead to the conception and birth of a child that would not be born otherwise. If, for example, a couple considered to be likely carriers of a serious genetic disorder discover that they do not carry the trait, they may decide to have children, even if before the test they were prepared to remain childless. 7 Joseph Fletcher, The Ethics of Genetic Control: Ending Reproductive Roulette (Garden City, NY: Anchor Press, 1974). 8 Thomas H. Murray, ‘What Are Families For? Getting to an Ethics of Reproductive Technology,’ Hastings Centre Report 32/3 (2002) 41–5. 9 Ontario Draft Report to Premiers, Genetics, Testing and Gene Patenting: Charting New Territory in Healthcare, Executive Summary (January 2002) ii. Available at: http://www.health.gov.on.ca/english/public/pub/ministry_ reports/genetic srep02/report_e.pdf 10 Lee M. Silver, Remaking Eden: How Genetic Engineering and Cloning Will Transform the American Family (New York: Avon Books, 1998). 11 Glenn McGee, The Perfect Baby: Parenthood in the New World of Cloning and Genetics (Lanham, MD: Rowman & Littlefield, 2000). 12 Virginia Postrel, The Future and Its Enemies. The Growing Conflict over Creativity, Enterprise, and Progress (New York: Free Press, 1998). 13 Neil Postman, Technopoly: The Surrender of Culture to Technology (New York: Knopf, 1992). 14 Jeremy Rifkin, Algeny (New York: Viking, 1983). 15 Bill McKibben, The End of Nature (New York: Random House, 1989). 16 Rifkin, Algeny, 231–4. 17 Postrel, The Future and Its Enemies, 164. 18 Leon Kass, Toward a More Natural Science: Biology and Human Affairs (New York: Free Press, 1985).

Response 47 19 Francis Fukuyama, Our Posthuman Future: Consequences of the Biotechnology Revolution (New York: Farrar, Straus and Giroux, 2002). 20 Michael Boylan and Kevin E. Brown, Genetic Engineering: Science and Ethics on the New Frontier (Upper Saddle River, NJ: Prentice-Hall, 2001). 21 George Parkin Grant, Technology and Justice (Toronto: Anansi, 1986). 22 Fukuyama, Our Posthuman Future, 7.

3 Genetics in Health Care anne summers

With the completion of the Human Genome Project (HGP), the biological science of genetics is coming into its own. Genetics will play a role in helping to solve many problems facing humankind today – problems in agriculture and animal husbandry, in waste management and environmental clean-up, and even in the development of energy sources. However, for the immediate future at least, the major impact of the HGP will be in health care. A Relatively New Discipline The practice of clinical genetics is a relatively new discipline, although genetics research has been under way for well over a hundred years. Gregor Mendel’s landmark work on heredity was published in 1865,1 Walther Flemming observed the first chromosomes in 1877,2 and E.B. Wilson assigned the gene for colour blindness to the human X chromosome in 1911.3 Despite this early work, the tools for clinical genetics have become available in the more recent past. James Watson and Francis Crick described the structure of DNA, the chemicals that make up chromosomes and genes, in 1953.4 In 1956, Joe Hin Tijo and Albert Levan reported that there were 46 chromosomes in the human cell, not 48 as had been believed previously.5 Jérôme Lejeune and others described the first chromosomal abnormality, Down syndrome, in 1959;6 P.S. Moorehead did the first chromosome analysis on blood in 1960; W.R. Breg and M.W. Steel did the first chromosome analysis on amniotic fluid cells in 1968;7 and Yuet Wai Kan and others performed the first DNA diagnostic test in 1978.8 The first draft of the HGP, a project to map human DNA, was published in 2001.9

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Genes and Chromosomes HGP researchers estimate that humans have 30,000 to 40,000 genes.10 Almost every gene is linked with a protein. The gene is sometimes viewed as the blueprint and the protein as the worker that carries out the job. If there is an abnormality or mutation in the gene, then the protein will not perform properly. Some genes and their proteins will affect many parts of the body, and if they are abnormal they may cause catastrophic problems. Other genes and proteins may be more specific for a particular body system, and abnormalities may have more contained effects. Genetic abnormalities may also occur in chromosomes. Each body cell (except mature red blood cells) carries 46 chromosomes, which come in 23 pairs: 22 numbered pairs and two sex chromosomes, XX in females and XY in males. The germ cells, eggs and sperm, carry one copy of each chromosome – 23 in total. The chromosomes carry our genes, and genes are made up of DNA. We inherit our chromosomes from our parents, one copy of each pair from our mother in her egg, and the other copy from our father in his sperm. Likewise, we have two copies of each gene, one inherited from each parent. People can be born with missing or extra chromosomes, missing or extra pieces of chromosomes, or rearranged chromosomes – all of which may cause problems. The most common chromosome abnormality is Down syndrome, which is due to an extra copy of chromosome 21. Traditional Role of the Clinical Geneticist Traditionally, a clinical geneticist would be asked to see a patient who has a particular constellation of symptoms. By using the patient’s medical history, records, and family history, a physical examination, and sometimes laboratory testing, the geneticist would hope to make a diagnosis. However, unlike other medical disorders, most genetic disorders are rare; for many of these disorders only a few cases have been described. Frequently, making a diagnosis requires extensive research. Using the diagnosis, the geneticist would provide genetic counselling about managing the disorder itself, risks for future children or future generations, and a potential prenatal diagnosis. Genetic counselling is expected to be non-directive. While this may be an unattainable ideal, the geneticist or genetic counsellor does his or her best to give the patient factual information in an unbiased manner,

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while still recognizing and acknowledging the emotional impact of this information on the family. Alternatively, a patient or a family may be referred with a diagnosis, and the geneticist or genetic counsellor is asked to counsel the family. In order to counsel such a family, the counsellor may need records from members, or testing of one or more members may be necessary. Unfortunately, at present relatively few treatments exist for people with genetic disorders. Changing Role of the Geneticist Over the past ten to fifteen years, the practice of genetics has undergone a transformation. Traditionally, geneticists have dealt with rare, mainly pediatric disorders. However, over the past decade, genes have been discovered for common adult-onset disorders such as breast cancer, colon cancer, melanoma, and cardiac disease. With these discoveries, the landscape of genetics has changed, as have the ethical challenges. Part of that change has been a shift from diagnosis to disease prediction. Diagnosis is the identification of a particular disorder in a person. The existence of the disorder is a fact, but the course of the disorder may be variable. Geneticists have always used family history to predict a person’s chances of carrying a specific gene. More recently, geneticists have used technologies such as fetal ultrasonography to predict the likelihood that a baby will be born with a particular genetic problem. However, with the discovery of new genes whose effects manifest in adulthood, the use of prediction has greatly increased. We can tell a carrier of such a gene the likelihood that he or she will develop a particular disorder, but rarely are we absolutely certain that the gene’s effects will manifest. For this reason, the language of genetic medicine has incorporated expressions such as ‘prediction,’ ‘predisposition,’ and ‘susceptibility.’ In human terms, this means that we give uncertain information to people who are generally used to hearing clear information from their physicians. Advances in Genetic Testing In the mid-1980s, there was an upsurge in the availability of DNA testing for a number of disorders. This trend has continued: the number of disorders for which testing is available has increased exponentially ever since. At the time of writing, we are able to test for about 1,300 genes. The biggest change came in the late 1980s when DNA testing became

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available for Huntington’s disease (HD), a rare (1 in 5,000 to 1 in 10,000) neurodegenerative disorder. The original testing involved a technique called linkage, which required the cooperation and consent of many family members and thus was unwieldy and time-consuming; often more than a year was required for a result. At the time, members of the genetics community understood that they were opening a Pandora’s box with this testing; but even though they had thought about the implications, they could not predict all the issues that would arise. In Canada, all HD testing was done under a very rigid research protocol through the Canadian Collaborative Study of Predictive Testing for HD.11 This group met once or twice annually, for two days at a time, and spent almost all that time discussing ethical issues related to predictive testing – issues such as privacy and confidentiality, genetic discrimination, the meaning of informed consent, the physician’s duty to warn relatives about their genetic risks when the tested person would not reveal information to them, and the testing of children who would not be able to consent. In March 1993, the discovery of the HD gene was announced.12 It turned out that everyone who carries the gene for HD has the same variation in the gene, which makes testing quite simple but magnifies the ethical issues. Benefits of Genetic Testing Genetic testing has been a tremendous boon for many people. For example, it has allowed a group of women who have lived in fear for years to find out whether they carry the gene for breast cancer. If they are not gene carriers, they are relieved; if they are gene carriers, they have more information with which to make difficult but potentially lifesaving decisions about mastectomy or the removal of the ovaries. Over time, this testing may move from information provision to focused treatment and eventually to a cure. With disorders such as HD and Alzheimer’s disease (AD), for which no treatment or cure exists, testing has allowed either relief or the potential to plan to live one’s life fully. Good documentation exists that the anxiety of not knowing can be worse than knowing bad news.13 Limitation of Genetic Testing Unfortunately, as with most technologies, there are limitations to genetic testing. With the majority of tests for adult-onset disorders, we

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do not know whether a gene carrier will actually develop a particular disorder. The major exception is HD: a gene carrier will develop HD if he or she lives long enough. The testing itself can also be ambiguous. DNA testing can be likened to reading a book to look for a spelling mistake, but the book is written in a language in which we are not totally fluent. This means that sometimes we find DNA changes, and we are not sure whether they are abnormal or not; sometimes we miss changes altogether. In terms of the results given to patients, we are usually fairly confident when we tell someone that he or she has a gene mutation; we are much less confident telling someone that he or she does not have a gene mutation because we cannot be entirely sure that we have found everything. Occasionally we find something that we have not seen before and we cannot tell the person if it is a harmful change or a normal variant. In this situation, the best we can say is that he or she will have to wait for more research. On the other hand, some genetic testing is relatively uncomplicated. For example, all people who carry the sickle-cell anemia gene have the exact same change in the gene. Genetic Reductionism In the field of human health, genetic technology has tremendous possibilities in terms of diagnosis, treatment, and cure, not only of genetic disorders but also of common diseases in both children and adults. The knowledge we develop from understanding the AD gene is very likely to help all people with AD, not just those with a genetic form of this disorder. The knowledge of the DNA structure of microbial organisms such as plasmodium, which causes malaria, will allow us to develop drugs to treat the devastating infections caused by such organisms. The danger in genetic testing or technology in general is the tendency to exaggerate the positive and negative power of this technology. On the one hand, the role that it will have in changing health outcomes may be overestimated; on the other, the evils that can proceed from genetic technology may be exaggerated. This tendency to exaggerate the effects that genetic technology will have on health care outcomes, whether in a positive or negative direction, is known as genetic reductionism. Case Study 1 Cathy, age 50, is referred to the familial breast cancer clinic for testing. She

Genetics in Health Care 53 is very anxious because a friend recently died of breast cancer at age 45. Cathy has heard about the breast cancer genes, BRCA1 and BRCA2, and although she has no family history of breast cancer, she wants a genetic test. She is told that she has a very low chance of carrying a breast cancer gene and therefore is not eligible for testing. Routine surveillance guidelines for low-risk women are discussed with her. Cathy is not satisfied. She returns to her family physician and tells him that she knows that she can have testing in the United States if she is willing to pay. He is somewhat doubtful, but agrees to send her blood for testing. The result indicates that, within the limits of the technology, she does not appear to carry changes in either the BRCA1 or BRCA2 gene. This information is accompanied by a caveat that this does not mean that she cannot get breast cancer and that she should follow routine surveillance. Cathy feels highly reassured by these results, decides to dispense with routine mammography, which she has heard is very uncomfortable, and does not return to her family physician for five years. When she does return, it is because she has been feeling unwell. During a routine physical examination, he finds a lump in her right breast as well as a node under her right arm. Further investigations show that Cathy has metastatic breast cancer.

Cathy epitomizes genetic reductionism. She believes the genetic result means she cannot get breast cancer, despite a warning to the contrary. She ignores the fact that one in nine women will develop breast cancer at some point in her life and that only 10 per cent of breast cancer is genetic. She does not follow the surveillance program recommended for women of her age, and in her case the results of this neglect are serious. Genetic reductionism can have even more devastating effects if it is a general attitude. For example, if administrators of health insurance programs decide that it would be more worthwhile to fund genetic testing for breast cancer than mammography and clinical breast examination, it is very likely that more women would die from breast cancer.14 Another example would be the funding of testing for cardiac genes in an obese, diabetic population of smokers. The money would probably be put to much better use in an anti-smoking and dietary-education campaign. Genetic technology is very seductive, but it is not the answer to all health care needs. Genetic Discrimination Of the many ethical issues that are daily concerns in the practice of clin-

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ical genetics, probably the most troublesome is genetic discrimination. This is the concept that someone with a particular gene or genetic profile would be denied rights equal to those of other members of society. This can happen in many areas, including health care (particularly in privately funded health care systems), insurance, employment, education, relationships, and parenting. It can also happen on many levels in society. It can be corporate, involving, for instance, an insurance company or an employer. It can occur in a community that censures parents who have a child with a particular disorder such as cystic fibrosis and then choose to have more children without prenatal testing, or it can involve similar censuring from a family or an individual. There can also be ethnic or racial genetic discrimination. For example, a government might mandate, without consulting the communities involved, that all persons of African origin be tested for the sickle-cell trait, or that all persons of Ashkenazi Jewish background be tested for Tay-Sachs disease. If genetic discrimination is to be avoided, privacy and confidentiality are paramount. Often there is a tension between telling others about one’s genetic background for health, education, or other reasons, and maintaining secrecy for reasons of possible discrimination.15 Case Study 2 Chris is a 25-year-old medical student applying for a high-power residency in neurosurgery at a major university. He has excellent marks and superb letters of recommendation. There are two equivalent candidates for this position. Through a surgical colleague, one faculty member becomes aware of a history of colon cancer in Chris’s family; his mother, older brother, and maternal grandfather all have had colon cancer, although this information is not on the application. Without revealing the health information, he influences his colleagues to choose the other candidate because he believes that Chris could be a poor risk in terms of the amount of energy and time involved in training a neurosurgeon.

In this fictional scenario, Chris is being discriminated against in a fairly subtle manner. He will undoubtedly find another residency position, although it may not be in neurosurgery, and he will never know why he wasn’t chosen for this position. However, it is easy to extend this scenario: an insurance company might refuse him life insurance unless he agrees to genetic testing for colon cancer, or a future partner might be unwilling to have children with him because of his genetic back-

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ground. The obvious consequence of this, as with all discrimination, is that the discriminators lose. Instead of viewing Chris as the product of his genes and his environment, they are making a decision based upon one gene – which he may or may not have. Genetic Determinism Genetic determinism is the view that a person’s genes dictate his or her fate. This attitude discounts the possibility of environmental effects.16 Case Study 3 Mary is 55. Her father died of HD at age 50. Mary has known since she was a teenager that the gene for HD is in her family and that she had a 50 per cent chance of inheriting it from her father. Testing for the HD gene has been available only since 1993. However, long before that, Mary decided that she knew she was going to get HD. She therefore made up her mind not to form any lasting relationships, as she did not wish to burden anyone with her disease; she perceived her mother as having been burdened with her father. Mary underwent a tubal ligation at age 18. She has never had a longterm partner and has very few friends. She was a good student in high school and was accepted at several universities, but since she believed she would get HD, she thought there was little point in wasting her time with higher education. She works in a factory. She lives alone in an apartment and her main contact is with her 52-year-old sister, a corporate lawyer, who is beginning to show signs of HD. Mary finally decides to have testing, and the result shows that she has not inherited the HD gene.

Mary has viewed her life in terms of HD and made every decision on this basis. In contrast, her sister has taken the opposite tack. Needless to say, when Mary finds out that she has not inherited the HD gene, she has a lifetime of regrets, and in many ways she will have more difficulty handling her result than someone who discovers that he or she is a gene carrier. Genetic determinism can be internal, as in Mary’s case, or external, as in Chris’s case. Both types of genetic determinism represent a dangerous way of viewing a human being that detracts from the person’s worth. If a person is viewed as a genetic composite, free will and self-determination become meaningless.

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Conclusion The benefits and limitations of genetic technology as applied to health care give rise to many ethical issues. I have touched on a few that we face in the practice of genetics. Authors able to extend the debate into the areas of bioethics and theology will discuss these issues, and others, throughout this publication.

NOTES 1 Gregor Mendel, ‘Versuche über Pflanzen-Hybriden,’ Verhandlungen des naturforschenden Vereines in Brünn 4 (1865) 3–47. 2 James Michael Connor and Malcolm Andrew Ferguson-Smith, Essential Medical Genetics (Oxford: Blackwell Scientific Publications, 1984) 5. 3 E.B. Wilson, ‘The Sex Chromosomes,’ Arch. Mikrosk. Anat. Entwicklungsmech 77 (1911) 249–71. 4 James D. Watson and Francis H.C. Crick, ‘Molecular Structure of Nucleic Acids – A Structure for Deoxyribose Nucleic Acid,’ Nature 171/4356 (1953) 737–8. 5 Joe Hin Tijo and Albert Levan, ‘The Chromosome Number in Man,’ Hereditas 42 (1956) 1–6. 6 Jérôme Jean Lejeune, Marthe Gautier, and Raymond Turpin, ‘Étude des chromosomes somatiques de neuf enfants mongoliens,’ Comptes rendus de l’Académie des Sciences 248 (1959) 1721–2. 7 Conner and Ferguson-Smith, Essential Medical Genetics, 5. 8 Yuet Wai Kan and Andrée M. Dozy, ‘Antenatal Diagnosis of Sickle-Cell Anaemia by D.N.A. Analysis of Amniotic-fluid Cells,’ Lancet 312/8096 (1978) 910–12. 9 International Human Genome Sequencing Consortium, ‘Initial Sequencing and Analysis of the Human Genome,’ Nature 409/6822 (2001) 860–921. 10 Ibid. 11 Tobin T. Copley, Sandi Wiggins, Suzanne Dufrasne, Maurice Bloch, Shelin Adam, William McKellin, Michael R. Hayden (The Canadian Collaborative Study for Predictive Testing for Huntington Disease), ‘Are We All of One Mind? Clinicians’ and Patients’ Opinions Regarding the Development of a Service Protocol for Predictive Testing for Huntington Disease,’ American Journal of Medical Genetics 58/1 (1995) 59–69. 12 Marcy E. MacDonald, Christine M. Ambrose, Mabel P. Duyao, Richard H. Myers, et al. (Huntington’s Disease Collaborative Research Group), ‘A Novel

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13

14 15 16

Gene Containing a Trinucleotide Repeat That Is Expanded and Unstable on Huntington’s Disease Chromosomes,’ Cell 72/6 (1993) 971–83. Sandi Wiggins, Patti Whyte, M. Huggins, et al., ‘The Psychological Consequences of Predictive Testing for Huntington’s Disease: Canadian Collaborative Study of Predictive Testing,’ New England Journal of Medicine 327/20 (1992) 1401–5. Neil F. Sharpe and Ronald F. Carter, Genetic Testing: Care, Consent and Liability (Hoboken, NJ: Wiley, 2006) 56. A.M. Summers, ‘Genetic Susceptibility Testing,’ in Genetic Testing: Care, Consent, and Liability, 288. Ibid., 287. Ibid., 288.

4 Commercialization of Human Genetic Research david blake farrell and eileen de neeve

The scale of the penetration of commercial interests into basic scientific research is causing concern among both research communities and the general public. Currently, at least four trends are making people uneasy: 1 The rush to establish property rights in novel genetic discoveries. 2 The search for commercial links between private industry and publicly funded institutions. 3 The search for new genetic products to offer the consumer. 4 Governments’ attempts to profit from these trends by establishing direct links with private industry. Property Rights in Genetic Discoveries The first of the four trends identified above can be described as the search for ways to control and exploit new discoveries in human genetic research. Thus, the most pressing question for many is whether anyone ought to be allowed to profit financially from this research. If the human genome is the common heritage of humanity, it should be used only for the general benefit of humanity. This view is supported by the observation that many people are psychologically troubled when their bodies are viewed or used as commodities: ‘Psychologists have found that a sense of coherence and body integrity is essential to individual development and a person’s sense of self.’1 Commercializing Life For most people, the body is not a neutral object, and for some, the very

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idea of commercializing life materials is a ‘violation of the sanctity of human, animal and plant life.’2 Beyond being considered simply the common property of humanity, the genome has also been considered essential to the dignity and the moral status of the person.3 As Pius XII reminded us, the individual is not ‘the absolute master of himself, of his body or of his soul.’4 To this argument some have replied that while the body may be sacred as a living thing, its elements can lose some of this sacredness when they are detached from the rest of the body.5 Body parts can therefore be alienated without affecting a person’s identity in any way. Hair can be cut and the body otherwise groomed; blood and human tissue donated for use by others become part of the recipient and cease to be essential to the donor’s identity. Still others point out that the human genome does not determine what kind of individual a person will become. They note that in many ways our humanness results from random processes in which both chance and the environment play as large a part as do our genes.6 Some feel that there is ‘an insidious tendency to look to our genes for most aspects of our “humanness” and to forget that the genome is but an internal scaffold for our existence.’7 Financially Motivated Interest Most objections to the commercialization of human genetic research are not based on the argument that such research is itself in some way fundamentally wrong. Rather, the objections are to the negative effects that such commercialization has had, or may have, on other relationships – or, as others have put it, ‘turning tissue, cell lines and DNA into commodities “violates body integrity, exploits powerless people, intrudes on human values, distorts research agendas, and weakens public trust in scientists and clinicians.”’8 For many, commercialization portends increased costs for publicly funded care, decreased opportunities for publicly funded research, and a challenge to the very idea that health care is a public good. The problem with commercialization is that it is the ‘infiltration of private financially motivated interest into the science and application of human genetic research.’9 Those who criticize such private, financially motivated interest worry that the commercialization of research threatens a number of important social attitudes. The idea that the body or its parts are commodities can encourage people to assign a monetary value to the body or its

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parts. This leads some to fear that the commercialization of these commodities will lead to their distribution according to a person’s ability to pay. Will individuals still donate their organs, blood, and tissue when they are viewed as commodities? Many are concerned that instead of donors, we will have people selling off their body parts to the highest bidder, a state of affairs that would encourage the exploitation of the vulnerable and lead to an unjust distribution of socially necessary things. Public altruism could be adversely affected, and relationships of trust, such as those between clinicians and patients, could be irreparably harmed were caregivers believed to exploit their positions for financial benefit. Patents on Human Genetic Material The massive increase in the number of patents on human genetic material presents a pressing challenge. Most jurisdictions now allow some patenting of genetic material, including human genetic material, at least for discoveries considered both novel and useful. Since the landmark case of Diamond v. Chakrabaty,10 which allowed the patenting of life forms, there has been an explosion of patents on DNA sequences, with over 25,000 being issued in the United States by the end of the millennium. 11 Transgenic animals have been patented in the United States, and it seems likely that similar patents will ultimately be issued in Canada. 12 However, while most of the discussion about rights in human genetic research has focused on patents, researchers can protect their discoveries in other ways. The simplest technique for doing so is to keep research results secret and to disclose them selectively. Indeed, this behaviour appears to have increased among researchers.13 Fees can be charged, and unauthorized disclosure can be penalized by means of commercial contracts, without there being any explicit property right to the material in question. Some argue that this problem must be kept in mind when assessing the utility of granting patents.14 Patents at least require the complete disclosure of the patented information that will eventually be released into the public domain. The secret formula for Coca-Cola® has remained a trade secret for a hundred years, and it will remain a secret until someone chooses to disclose it. Patents may be seen as a compromise, which ensures disclosure of socially useful information in return for a limited monopoly over its use. One objection to patenting genetic material is that it leads to the privatization of an essentially public resource. Many believe that it is sim-

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ply unjust for someone to capture and own a part of a thing that is at least symbolically the common heritage of humanity. While admitting the validity of the basic patent system, others have argued that the current system may need to be modified when we deal with patents on genetic material.15 They object to the rush to patent discoveries, especially in the United States, where patents have been issued on genetic structures without demonstration of their utility. While noting these concerns, others point out that today the system for issuing these patents is being more strictly applied in the United States.16 Now, a known use has to be disclosed if a patent on genetic material is to be issued. Others have also argued that the current duration of patents is simply too long and that the granting of exclusive rights creates a danger that patent holders will refuse to use their patents, preferring instead to profit from some other existing patented right. However, if this behaviour exists, the corrective is the compulsory licensing of the patent right, rather than the elimination of patent rights entirely. Such a remedy exists in Canada today; governments may use any patent provided that they pay adequate compensation to the owner.17 A further objection to the patenting of human genetic material is that the patented genetic material really results from years of research by a number of different people who often have been engaged in publicly funded research. Many question why only those who are engaged in the final stage of research should be allowed to profit from it, especially when they have also received public funding. To many, it seems that the public is being asked to pay twice for the same research. They fear that the increasing number of patents will lead to increased costs for publicly funded research, as institutions have to pay a premium for information that had been freely available.18 Others are concerned that the carving up of patent rights between researchers and institutions might lead to significant constraints on research, as each participant becomes just another toll booth to be passed on the road to further research.19 While the effects on research might be minimal if these groups worked together, there are still concerns that the large numbers involved will inevitably lead to increased costs for the consumer. Related to this concern are fears about the effect of widespread patenting on the people who volunteer to serve as research subjects. Many people fear that, as the process is commercialized, a struggle will develop between researchers and research subjects over the financial or even therapeutic benefits of research, and that this struggle will ultimately be devastating for future research.

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Commercial Links between Private Industry and Public Institutions Concerns also exist about the new links established between private industry and publicly funded institutions. While research has been commercialized in the past, publicly funded institutions have not generally participated in partnerships with the private sector. This is a new development, which was hindered in the past by an ethos of altruism and service in public institutions. However, this hindrance was also partly due to an elitism on both sides: industry was suspicious of the commercial viability of most academic research, and academia was concerned about the effects of such links on academic freedom.20 This situation is changing as governments have started to encourage publicly funded institutions to profit from their research activities by entering into partnerships or licensing agreements with private industry, which can exploit their discoveries.21 Publicly funded institutions also have been encouraged to seek patent protection for their discoveries to ensure that they can exploit them commercially. In Canada and the United Kingdom, policies are being put in place to encourage universities to take measures to ensure that they can profit financially from their investigators’ research. In the United States, the Federal Transfer Policy Act encourages collaboration between federally funded researchers and private industry.22 Some people worry that such wide-scale collaboration between industry and academia will have detrimental effects on academic research. They point out that links to private industry, together with the search for patent rights, could force academic researchers into new kinds of behaviour that are ill-adapted to basic research.23 Many are concerned that these private-sector collaborations may also influence research to be directed solely toward expectations of profitability. Universities may have to abandon lines of research that are not financially profitable.24 Investors will often grant research support only on the condition that they are given a share of any subsequent patent rights. For many, the commercialization of research activities seems to draw resources away from basic research, which is already underfunded.25 In the past, those engaged in clinical practice or scientific research did not pursue personal enrichment, but followed their scientific curiosity and were motivated by a concern for the welfare of others. Many now worry that the recent collaboration between public institutions and industry will create a for-profit mentality which will have a detrimental effect on professional attitudes and on the public’s trust in scientists and

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clinical practitioners such as nurses and physicians.26 Already, some have noticed that researchers keep their results secret and refuse to share them, in part because they have already entered into exclusive agreements with private industry. Others point out that industry is often a major contributor to basic research, and that industry also has an incentive to ensure that new applications will be found for the use of their existing patented material. In addition, some believe that increased research costs have made the collaboration between industry and academic research a necessity in the twenty-first century. Some say that the public lost trust in clinical practitioners and scientists long before the commercialization of research. The institutionalization of scientific research during the nineteenth century led to the view that the people were a fungible resource that could be used on a wide scale to investigate disease.27 The holistic sense of the person was lost once the body was fragmented into a collection of diseases, to be investigated more or less independently of the patient’s wishes.28 The Search for New Genetic Products Another concern about the commercialization of human genetic research is that private industry will develop solutions to exploit previously unknown problems. Here the objection is not so much that profits are being made from genetic research, but that unnecessary products will be produced for the public to consume. Garland Allen has noted that we are becoming increasingly unwilling to accept imperfections in ourselves, and commercialization could foster a climate in which eugenic decisions will be encouraged.29 Currently, genetic manipulation could achieve a massive selection of similar genes for an entire population, with the danger of decreased resistance to catastrophic illness that is often observed in populations with uniform genetic structures. In reply, some have argued that the difference between providing genetic solutions for medical concerns and social concerns is similar to the difference between medically necessary surgery and cosmetic surgery. Writers such as Robert Nozick ask why the individual should not be able to choose the features that he or she wants. From this point of view, eugenics is questionable only when it is a state-imposed policy. Nozick admits, however, that a basic regulatory scheme must be put in place to ensure that socially dangerous practices, such as everyone choosing to have a baby boy, are avoided.30 Commercial developments can add to the consumer’s choice in

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genetic goods, and this may present a challenge to publicly funded research. Nevertheless, limiting this choice would not automatically lead to increased public funding for research. As Michael Burgess has observed, ‘Funds withheld from genomic research or genetic testing may not become available or be assigned to a more important social activity ... An additional strategy (e.g. lobbying) is required to get the funding assigned to the preferred activity.’31 Government Attempts to Profit The most recent trend in the commercialization of human genetic research has been the direct entry of governments into the commercial exploitation of this research. While governments themselves do not seek direct ownership of genetic material, they have sought to control access to it by setting up genetic databanks from among the populations they control. These databanks generally are presented as a public good, in that they are publicly held and will ensure that some research benefits are shared with the public. The creation of these genetic databanks is distinguished from the private patenting of genetic material, which is sometimes believed to hinder the creation of these databanks by deterring the deposition of material in them.32 However, the distinction between public and private benefit is more apparent than real, for the benefits are almost always expressed in financial terms. In creating these databanks, governments often enter into a direct commercial agreement with a for-profit private group. This was the approach that Iceland took when it granted DeCode Genetics an exclusive twelve-year licence to exploit a health care database.33 Other governments have established, or are contemplating the creation of, non-exclusive databases, which private and public groups will use for a fee. Possibly, the governments may take an interest in any of the subsequently patented rights.34 These developments have caused concern. In the case of Iceland, objections have been raised because the government failed to have an independent ethics committee review its project before approving it.35 Another objection was that no consent was required of research subjects before they were enrolled in the research.36 Estonia and Quebec, which have similar proposed projects, have addressed these issues, but other concerns remain. Some note that the benefits generated are often monetary. To ensure a just distribution to participants, both governments and researchers may need to work with a group representative.37

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There seems to be less concern about generating benefits for the genetic population being used as a resource.38 So far, it appears that little attempt has been made to get group consent, as opposed to individual consent, for the use of group-specific genetic material; in part this is because of the difficulties of identifying the group concerned.39 Some have argued that this kind of research represents a particular threat to small, isolated communities with a shared genetic heritage. There are concerns that indigenous people are especially vulnerable to exploitation. Governments have a poor track record with indigenous populations, and so perhaps it is not surprising that the World Council of Indigenous People has unanimously condemned the Human Genome Diversity Project.40 In addition, a conflict of interest exists when governments, which ought to ensure that industry is adequately regulated, become partners of industry. While individual states may benefit, there is no guarantee that these benefits will be extended to humanity as a whole. There also is no guarantee that research benefits will actually flow back to the research subjects. Unlike patents, the property rights in data banks are unending, and the states that set them up also have a financial interest in preserving them. The commercialization of these databanks therefore may represent more of a threat to humanity than does the patenting of genetic material. Ethical Considerations Each of these developments creates its own moral dilemma; these dilemmas can be examined from a number of ethical stances, which have an impact on our ethical orientation when we discuss trends in human genetic research. For example, for libertarians, genetic advantage is no different from any other natural advantage that an individual possesses.41 Even when others have nourished these special qualities, the libertarian holds that the individual is entitled to profit from his or her natural advantages; individuals should not be forced to give away something of value, such as their tissue, when they can sell it instead. According to the libertarian, it is unreasonable to allow patents on medications and then to refuse them on novel genetic material. Others, however, have expressed a utilitarian concern about the societal effects of the commercialization of human genetic research. They worry that commercialization may be ineffective, or have serious and unwelcome secondary effects. Thus, some have argued that patents are

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problematic because they discourage the creation of genetic databases.42 Others feel that the current patent regime does not ensure an adequate distribution of benefits to society,43 or that commercialization creates conflicts of interest in knowledge-driven academic research,44 or that the commercialization of human genetic research will lead to increased costs for research that will be done in any case, and that there will be no commensurate increased benefits for society. Still others feel that a utilitarian stance cannot be a complete description of the fundamental ethical issues involved. Health care workers enter into a covenant with society to use their knowledge for the benefit of the sick; health care researchers have specific duties that effectively prohibit them from purely economic behaviour.45 From a Kantian deontological point of view, it is repugnant to treat human beings, or the elements that make up human beings, as means to some end other than the human being in question. Conclusion We have summarized some trends in the commercialization of human genetic research that appear to be causing concerns in both the research community and the general public. Two of these trends are of particular importance. The first is the increasing participation of governments in commercial research activities. While the economic issues involved in the commercialization of human genetic research are complex, it seems clear that the participation of governments is problematic. Some have argued that the market in health care is special, and that traditional market mechanisms may not lead to the most effective distribution of social resources. Whether health care presents a special market or not, it remains clear that governments have an essential role to play as regulators, and that this role can conflict with their aspiration to act as economic agents. The second trend of concern is the issue of the sanctity of life. Although an important concept connected with concerns about the quality of life, the sacredness of the body’s different elements has rarely been adequately defended in modern times. As a result, it is unclear whether human tissue can meaningfully be said to be sacred, or whether human genetic research actually poses a threat to the sanctity of life. Finally, the trends discussed so far present a number of moral dilemmas. Those who have discussed duties have also tended to refer to utilitarian concerns, and vice versa. Even libertarians such as Nozick have

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limited their arguments by suggesting that some utilitarian balancing should take place. Many authors have taken more than one ethical stance, and their conclusions often seem to depend as much on their adopted ethical stances as on the ethical problems at issue. This apparent and surprising eclecticism is perhaps our most interesting observation.46

NOTES 1 Dorothy Nelkin and Lori Andrews, ‘Homo Economicus: Commercialization of Body Tissue in the Age of Biotechnology,’ Hastings Center Report 28/5 (1998) 35. 2 ‘Resisting Commercialization of our Genes.’ Conference organized by the Council for Responsible Genetics, Cambridge, Mass., 26 October 1996. Quoted in Nelkin and Andrews, ‘Homo Economicus,’ 36. 3 The Universal Declaration on the Human Genome and Human Rights. http://portal.unesco.org/shs/en/ev.php-URL_ID=1881&URL_DO=DO_ TOPIC&URL_SECTION=201.html 4 Henry K. Beecher, ‘Medical Research and the Individual,’ in Life or Death: Ethics and Options, ed. Edward Shils, Norman St. John-Stevas, Paul Ramsey, et al. (Portland, OR: Reed College, and Seattle: University of Washington Press, 1968) 126, n. 9. 5 Albert Mayrand, L’inviolabilité de la personne humanine (Montreal: Wilson & Lafleur, 1975) 29–30. 6 Michael M. Burgess, ‘Whither Morality in Genetic Tests?’ Health Law Review 9/3 (2001) 3–10. 7 Svante Pääbo, ‘The Human Genome and Our View of Ourselves,’ Science 291/5507 (2001) 1219–20. 8 Bartha Maria Knoppers, Marie Hirtle, and Kathleen Cranley Glass, ‘Commercialization of Genetic Research and Public Policy,’ Science 286/5448 (1999) 2277–8. 9 Timothy A. Caulfield and Colin Feasby, ‘The Commercialization of Human Genetics in Canada: An Overview of Policy and Legal Issues,’ in Socio-Ethical Issues in Human Genetics, ed. Bartha Maria Knoppers (Cowansville, QC: Éditions Yvon Blais, 1998) 343, 345. 10 Diamond v. Chakrabaty, 447 U.S. 303 (1980). 11 Robert Mullan Cook-Deegan and Stephen J. McCormack, ‘Patents, Secrecy, and DNA,’ Science 293/5528 (2001) 217. 12 Harvard College v. Commissioner of Patents (Can.), (FCA) 189 D.L.R. 4th, 385, reversed (2002) 4 S.C.R. 45.

68 David Blake Farrell and Eileen de Neeve 13 Eric Stokstad, ‘Data Hoarding Blocks Progress in Genetics,’ Science 295/5555 (2002) 599. 14 Joel Mokyr, The Levers of Riches: Technological Creativity and Economic Progress (New York: Oxford University Press, 1990) 247–52. 15 Richard Gold, ‘Building a Better Patent Law,’ Globe and Mail, 17 May 2002. Michael A. Heller and Rebecca S. Eisenberg, ‘Can Patents Deter Innovation?: The Anticommons in Biomedical Research,’ Science 280/5364 (1998) 698–701. On this point, consider the freezing effect that many fear will result from the decision in Madey v. Duke University, 307 F. 3d. 1351 (Fed. Circ. 2002), which limited the experimental use defence to patent infringement. For the court, the defence was not to apply if the infringement was ‘in furtherance of the alleged infringer’s legitimate business ... regardless of whether a particular institution or entity is engaged in an endeavor for commercial gain.’ See also Cristina Weschler, ‘The Informal Experimental Use Exception: University Research after Madey v. Duke University,’ New York University Law Review 79 (2004) 1536–69. 16 Nicholas Thompson, ‘Gene Blues: Is the Patent Office Prepared to Deal with the Genomic Revolution?’ Washington Monthly, April 2001. 17 Patent Act, R.S.C., c. P-4, Arts. 19–19.1 (1985). 18 Heller and Eisenberg, ‘Can Patents Deter Innovation?: The Anticommons in Biomedical Research,’ 698. 19 Ibid. 20 Harvey Drucker, ‘Technology Transfer: A View from the Trenches,’ in Genome Symposia. http://www.piercelaw.edu/risk/v015/spring/drucker.htm. 21 Ehsan Masood, ‘Britain Embraces “Knowledge Economy,”’ Nature 396/6713 (1998) 714–15. Brenden Horton, ‘Georgia Realizes the Commercial Potential of Science,’ Nature 404/6779 (2000) 794. David Spurgeon, ‘Canadian Report Urges Universities to Make Research Earn Its Keep,’ Nature 400/6747 (1999) 805. 22 Drucker, ‘Technology Transfer: A View from the Trenches,’ in Genome Symposia. http://www.piercelaw.edu/risk/v015/spring/drucker.htm. Reid G. Adler, ‘Genome Research: Fulfilling the Public’s Expectations for Knowledge and Commercialization,’ Science 257/5072 (1992) 908–14. Christopher J. Harnett, ‘The Human Genome Project and the Downside of Federal Technology Transfer,’ in Genome Symposia. http://www.piercelaw.edu/risk/vol5/ spring/harnett.htm. Rebecca S. Eisenberg, ‘Technology Transfer and the Genome Project: Problems with Patenting Research Tools,’ in Genome Symposia. http://www.piercelaw.edu/risk/vol5/spring/Eisenber.htm. Kate H. Murashige, ‘Genome Research and Traditional Intellectual Property Protec-

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23 24 25 26

27

28

29 30 31 32 33

34

tion – A Bad Fit?’ in Genome Symposia. http://www.piercelaw.edu/risk/vol7/ summer/murashig.htm. Caulfield and Feasby, ‘The Commercialization of Human Genetics in Canada,’ 360–5. Ibid. Graeme Laver, Arno Müllbacher, and Paul Waring, ‘How Commercialization Puts a Blight on Research,’ Nature 412/6849 (2001) 765. Edmund Pellegrino, ‘The Commodification of Medical and Health Care: The Moral Consequences of a Paradigm Shift from a Professional to a Market Ethic,’ Journal of Medicine and Philosophy 24 (1999) 243–66. A.S. Relman, ‘Shattuck Lecture – The Health Care Industry: Where Is It Taking Us?’ New England Journal of Medicine 325 (1991) 854–9. William Bynum, ‘Reflections on the History of Human Experimentation,’ in The Use of Human Beings in Research, with Special Reference to Clinical Trials, ed. Stuart F. Spicker, Ilai Alon, Andre deVries, and H. Tristram Engelhardt, Jr. (Dordrecht: Kluwer Academic Press, 1988) 29, 36. Roy Porter, The Greatest Benefit to Mankind: A Medical History of Humanity (New York: Norton, 1998) 337–47. Cecil Helman, Culture, Health and Illness: An Introduction for Health Professionals, 3rd ed. (Oxford: Butterworth-Heinemann, 1994) 104. Jack Coulehan, ‘I Treat All of My Patients Aggressively,’ Journal of Medical Humanities 11/4 (1990) 193–7. Garland E. Allen, ‘Is a New Eugenics Afoot?’ Science 294/5540 (2001) 59–61. Robert Nozick, Anarchy, State, and Utopia (New York: Basic Books, 1974) 314– 15, note. Burgess, ‘Whither Morality in Genetic Tests?’ 5. See Knoppers, Hirtle, and Glass, ‘Commercialization of Genetic Research and Public Policy.’ Geneviève Cardinal, Mylène Deschênes, Alexandra Obadia and Bartha Maria Knoppers, Le projet Cartagène: L’encadrement juridique et éthique: document de discussion (Montreal: Centre de recherche en droit public, 2001, available at: http://www.ggh-project.info/docs/encadrement_ethique.pdf) 42. James Jeffords and Tom Daschle, ‘Political Issues in the Genome Era,’ Science 291/ 5507 (2001) 1249–51. Ibid. Cardinal, Deschênes, Obadia and Knoppers, Le project Cartagène: L’encadrement juridique et éthique, 42–3. For a recent discussion of all the issues involved in the commercialization of human gene banks (or biobanks), see Jasper A. Bovenberg, Property Rights in Blood, Genes and Data: Naturally Yours? (Leiden: Martinus Nijhoff, 2006). Bovenberg, at p. 115, also notes that there

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35

36 37

38

39

40 41 42 43

is currently an ‘initiative for an international and potentially global Biobank with the establishment of the Public Population Project in Genetics “P3G” consortium.’ According to its draft blueprint, September 2005, ‘P3G is an international consortium whose regular members are leading public organization partaking in large-scale genetic epidemiology projects and biobanks ... P3G has achieved a critical mass to form the principal international body for the harmonization of public population projects in genomics.’ Draft blueprint. www.p3gconsortium.org/docs/blueprint_Draft2005.pdf Bogi Andersen and Einar Arnason, ‘Iceland’s Database Is Ethically Questionable,’ British Medical Journal 318/7197 (1999) 1565. Wolfgang Edelstein, ‘The Responsible Practice of Science: Remarks about Crosspressures of Scientific Progress and the Ethics of Research’ (Berlin: Max Planck Institute for Human Development, 1998). Available at: http://www.mannvernd.is/ english/articles/we.twim.html. Andersen and Arnason, ‘Iceland’s Database Is Ethically Questionable,’ 1565. A number of jurisdictions are giving increased consideration to the issue of human gene banks, and this has lead to growing literature considering the issues involved in the creation of such databanks. See, for example, Jane Kaye, ‘Do We Need a Uniform Regulatory System for Biobanks across Europe?’ European Journal of Human Genetics 14 (2006) 245–8; Susan M.C. Gibbons, et al., ‘Lessons from European Population Genetic Databases: Comparing the Law in Estonia, Iceland, Sweden and the United Kingdom,’ European Journal of Health Law 12/2 (2005) 103–33; Karen J. Maschke, ‘Navigating an Ethical Patchwork – Human Gene Banks,’ Nature Biotechnology 23 (2005) 539–45. Jon F. Merz, David Magus, Mildred K. Cho, and Arthur L. Kaplan, ‘Protecting Subjects’ Interests in Genetics Research,’ American Journal of Human Genetics 70 (2002) 965–71. Charles Weijer, ‘Protecting Communities in Research: Philosophical and Pragmatic Challenges,’ Cambridge Quarterly of Healthcare Ethics 8/4 (1999) 501–13. Charles Weijer, Gary Goldsand, and Ezekiel J. Emanuel, ‘Protecting Communities in Research: Current Guidelines and Limits of Extrapolation,’ Nature Genetics 23/3 (1999) 275–80. See Nelkin and Andrews, ‘Homo Economicus: Commercialization of Body Tissue in the Age of Biotechnology,’ 34. Nozick, Anarchy, State, and Utopia, 161–3. See Knoppers, Hirtle, and Glass, ‘Commercialization of Genetic Research and Public Policy.’ E. Richard Gold, ‘Biomedical Patents and Ethics: A Canadian Solution,’ McGill Law Journal 45 (2000) 413–35. Lisa Sowle Cahill, ‘Genetics, Commod-

Response 71 ification and Social Justice in the Globalization Era,’ Kennedy Institute of Ethics Journal 11/3 (2001) 221. 44 Caulfield and Feasby, ‘The Commercialization of Human Genetics in Canada,’ 343–401. 45 See Pellegrino, ‘The Commodification of Medical and Health Care.’ 46 We wish to acknowledge the support of the Thomas More Institute for Adult Education, of which we are both members.

RESPONSE: Peter Ibbott Recent statutory and administrative changes to patent law have strengthened patent protection, extended it into new subject matter, and encouraged publicly funded university and government laboratories to patent their findings. The impact on human genetic research has been profound.1 In their essay, Farrell and de Neeve have set out to identify and evaluate the broad and often incommensurate set of human values that may be threatened by commercial human genetic research. Heading the list of concerns is whether increased commercialization of human genetic research will harm the sanctity of human life. Farrell and de Neeve provide an excellent review of the broad range of competing value claims. The areas proving to be most divisive are the patenting of parts of the human genome, trade in human tissue, and commercial cloning technology. The range of views suggests that a consensus is unlikely to emerge from the ongoing debate. A related value perceived to be under threat is the integrity of community. As Farrell and de Neeve point out, the creation and commercial exploitation of genetic databanks by governments have not always been with the consent of the individuals and groups involved. There is a reasonable concern that politically weak groups (such as indigenous populations) may be exploited. A third set of values they identify as being under threat are those associated with the integrity of science. Introducing the profit motive into publicly funded research laboratories might harm basic research, reduce public support and participation in research, and undermine norms of ethical conduct in research involving human subjects. Farrell and de Neeve point out that scientists have long been active in commercializing their research, and history suggests that commercialization need not be fatal to the integrity of scientific exploration. Continued government financial support for basic research, and continued govern-

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ment vigilance in protecting important standards of research, can do much to mitigate undesirable outcomes. While Farrell and de Neeve resist drawing conclusions about the appropriate response to the threats posed by commercialization, they point out that governments must negotiate a path through the dilemmas posed by commercial human genetic research. They argue that government enthusiasm for the commercial opportunities presented by the new science is worrisome, as it may cause governments to neglect their other social objectives and obligations. When this enthusiasm for the commercial benefits of the new science is combined with a desire to avoid a difficult debate over boundaries in human genetic research, governments may abdicate their responsibilities and let market forces settle the matter. The reason governments have been enthusiastically strengthening patent protection is the expectation that this will increase innovation rates and improve the disclosure of findings. Without strong patent protection, large firms tend to keep their discoveries secret and recoup their research investment by earning markups on the innovative products that embody these research discoveries. Strong patents eliminate the need for secrecy and open up profitable licensing opportunities. As small firms usually find it too expensive to fully develop products containing proprietary knowledge, the ability to patent and license is essential if high-tech start-up firms are to flourish. Government enthusiasm for granting patents to university scientists and to government scientists stems from the perception that this course of action will stimulate technology transfer. Without patents, the results of publicly funded research are in the public domain, and any company that sees a profitable application can develop a therapy without paying licence fees. Even with free access, firms must make substantial investments to develop basic research findings into useful therapies. Unless investors can be assured of an exclusive licence, these potential therapies may lie undeveloped. By granting patents to university and government scientists, exclusive licensing arrangements can be negotiated, and the development of therapeutic applications of basic research can be hastened. In addition, publicly financed laboratories can use their patents to supplement public funding with private partnership investments and licence fees. Following the recent reforms in U.S. patent legislation and administration, there was a doubling of new patents granted, patent output by leading U.S. universities tripled, and small and medium-sized firms

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more than doubled their research and investment expenditures.2 The evidence is also compelling that the expansion of university patenting has increased technology transfer from university laboratories to the private sector,3 and that the impact has been particularly strong in biotechnology fields.4 This evidence from the U.S. experience has influenced governments around the world and resulted in a recent series of multilateral agreements that strengthen intellectual property.5 Despite government enthusiasm for increased patent protection, many economists have been less sanguine. To see why, it is useful to examine a few strands of the ongoing debate over optimal patent design in the economics literature.6 The most obvious problem is that a patent, and any exclusive licensing agreement that follows from the patent, creates a monopoly on any new application or therapy. A firm that has a monopoly on a therapy can increase its profit by increasing the price for access to the therapy. The increased innovation from increased patent protection therefore comes at the cost of restricted access. A second strand of the literature has explored the circumstance in which research is aimed at uncovering a finite stock of discoveries. In such an environment, research groups tend to enter into a patent race in which they vie to be first over the line to claim the monopoly right.7 By strengthening patent protection, governments may trade underinvestment in research for overinvestment in wasteful patent races. As the human genome project has demonstrated, even scarce public research resources can be diverted into such duplication. A third strand of the literature has begun to examine situations in which large numbers of patented research tools and other patented upstream innovations are necessary for the development of downstream therapeutic products. In such circumstances, the developer must negotiate complicated licence arrangements with many separate interests. In addition to the licence costs, developers must confront a number of substantial transaction costs. The most obvious is the cost of legal expertise to negotiate complex licences, to supervise research programs to ensure that the patent rights of others are not violated, and to settle the inevitable disputes. Beyond the legal costs, opportunistic patent holders may begin to use negotiation hold-ups as a means of extracting higher licence fees.8 The result can actually slow the pace of innovation and technology transfer. Whatever the impact on the pace and efficiency of research, there is a clear economic argument that increasing patent rights will increase the price of new therapies. This creates a real concern that new therapies

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that were partly supported by public funds may become less accessible to the poor. Without government intervention, distributive justice may be sacrificed to increase the rate of progress. This brings us back to the Farrell and de Neeve thesis that the newfound and uncritical enthusiasm of governments for the commercialization of human genetic research presents a significant cause for concern. Many economists would agree. First of all, it is an open question whether increasing patent protection increases economic efficiency. Second, even if efficiency is increased, consumers can expect higher costs for therapeutic products. Governments have not yet confronted the implications these changes pose for distributive justice and the sustainability of public health insurance. Given that increased patent protection and commercialization is a global reality, economists have begun examining a number of policy issues raised by the new property rights regime.9 Among these, the problem of transaction costs in licensing markets is perhaps the most deserving of greater attention. Governments should begin to examine when interventions in licensing markets are useful and the best methods for intervening. In certain circumstances, it may be expedient to consider interventions ranging from limits on the types of injunctions that patent owners might seek10 up to provisions for compulsory licensing. One further possibility is the use of eminent domain action to remove bottlenecks and bring critical patents into the public domain.11

NOTES 1 For a review of the policy developments that have changed the property regime over knowledge and an examination of the empirical evidence of the impact of this policy experiment on research activity, see Adam B. Jaffe, ‘The U.S. Patent System in Transition: Policy Innovation and the Innovation Process,’ Research Policy 29 (2000) 531–57, and Nancy T. Gallini, ‘The Economics of Patents: Lessons from Recent U.S. Patent Reform,’ Journal of Economic Perspectives 16/2 (2002) 131–54. 2 Gallini, ‘The Economics of Patents,’ 131. 3 Richard Jensen and Marie Thursby, ‘Proofs and Prototypes for Sale: The Licensing of University Inventions,’ American Economic Review 91/1 (2001) 240–59. 4 See Jaffe, ‘The U.S. Patent System in Transition.’ 5 The 1994 formation of the World Trade Organization (WTO) led to the

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6

7

8

9 10 11

1995 agreement on Trade Related Aspects of Intellectual Property (TRIPS) and the 1996 cooperation agreement between the WTO and the World Intellectual Property Organization (WIPO) on implementing the TRIPS agreement. Following this, a number of multilateral treaties such as the 1996 Copyright Treaty and the 2000 Patent Law Treaty have begun the process of strengthening and harmonizing intellectual property legislation. For a review of the theoretical arguments about the economic costs and benefits of increased patent protection, see Roberto Mazzoleni and Richard R. Nelson, ‘Economic Theories about the Benefits and Costs of Patents,’ Journal of Economic Issues 32/4 (1998) 1031–52. Yorum Barzel was the first to show how an inefficient patent race could emerge when firms were competing in a common pool. See Yorum Barzel, ‘Optimal Timing of Innovation,’ Review of Economics and Statistics 50/3 (1968) 348–55. For a review of some of the bargaining problems that can slow down the pace of science and its therapeutic application, see Michael A. Heller and Rebecca S. Eisenberg, ‘Can Patents Deter Innovation? The Anticommons in Biomedical Research,’ Science 280/5364 (1998) 698–701, and Jaffe, ‘The U.S. Patent System in Transition,’ 550–2. Jaffe, ‘The U.S. Patent System in Transition,’ 549–54, does a good job of reviewing most of the important policy issues. Rebecca S. Eisenberg, ‘Patents and the Progress of Science: Exclusive Rights and Experimental Use,’ University of Chicago Law Review 56 (1989) 1017–86. Richard V. Adkisson, ‘Intellectual Property and Eminent Domain: If Ever the Twain Shall Meet,’ Journal of Economic Issues 36 (2002) 41–53.

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PART TWO Differentiating the Pre-Empirical Components of the Opposed Stances

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5 The Character of Moral Value, Moral Knowledge, and Moral Debate cynthia crysdale

In different ways, the previous essays have alluded to the distinct cultural situation in which we find ourselves. First, there is the emphasis on the human individual, and particularly on his or her ability to think and choose for himself or herself. In conjunction with the rise of capitalism, this emphasis makes our culture a culture of choice. The right of the individual to choose, particularly as a consumer, is highly valued. Furthermore, the modern age has seen science and technology wedded to each other in an unprecedented way. The quest to know, simply for the joy of understanding and appreciating the mystery of nature, has given way to applied science. The pressures to make any scientific discovery practical, and marketable, are tremendous. Finally, part of the legacy of the Enlightenment is the recognition that each person’s view of the world is a little different from the view of every other person. Each person has his or her social location that affects what he or she knows and how it is known. So, typically, in public discourse relativism is presumed: no one claim to truth can have universal significance since there is such a pluralism of voices and views. While it is impossible here for me to address the assets and liabilities of this modern legacy, I would like to present a few propositions that I hope will clarify our thinking about moral value, moral knowledge, and moral debate. Dynamism and Context Let me begin with two points from Kenneth Melchin’s book, Living with Other People.1 First, moral value is not a quality but a direction of change. We tend to think of values as we think of colours – we choose a purple

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carpet or a green car; in a similar fashion, we choose genetic health and moral integrity. But health and integrity are not like colours. Rather, they refer to a dynamic set of relations that one chooses to pursue in a particular manner. Moral knowledge grasps, not a static situation, but a dynamism. If one acts in a certain way, the cycles of reaction, what Bernard Lonergan calls ‘schemes of recurrence,’ will veer off in one direction. If one acts in another way, a different set of possible and probable outcomes opens up. If one finds oneself with a nasty cold, one doesn’t sit down with a catalogue and decide which ‘colour’ of health one wants to order. One considers a myriad of actions – from visiting the doctor, to taking medicine, to having a hot bath or taking the day off work to stay in bed. Each choice, each action, will instigate a new situation and will set up new ‘conditions of possibility’ for the future. Thus, moral value – moral knowledge, moral choice – involves not selecting things as much as engaging in a dynamic set of actions and reactions. Second, moral value is not about individual events but about relations among events. The choice at hand may be instigated by a single event, but our choosing is never isolated from the series of events leading up to the decision. In other words, moral choices always occur in a context, and the validity of our choices will be related to our grasp of that context. We need to understand the intentions behind certain actions. We need to grasp the consequences of further actions. We need to understand the larger social structures in which past events have occurred and in which our projected future actions will take place. Moral knowledge is not knowledge of any of these things in isolation, but involves knowledge of the relations among all of these elements. Melchin concludes: ‘Moral knowledge is knowledge of the trajectory of progress or decline that is expressed in the movement from a situation, through intentions and social structures, to action directed towards goals, and actual consequences.’2 These two points emphasize the dynamism and contextualization of all our moral knowledge and choice. This dynamic, contextual understanding contradicts some prevalent notions that we carry around regarding what is involved in our freedom of choice. It contradicts both the Cartesian image of an isolated knower, and what I call an ethics of control. Our emphasis on the right to choose, and instant solutions to problematic situations, leads us to assume that moral choices are isolated events in which I choose a single thing – beauty, honesty, justice; or a child, a car, a member of parliament. Thus, our rhetoric about waging war (on terrorism, drugs, crime), about medical options for the treat-

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ment of disease, or about whether to have a child, assumes a direct and easy connection between a single action and a clear outcome. In fact, all that any choice does is to set up new conditions of possibility in the hope that a particular outcome will result. One does not choose to have a child, one chooses to engage in sexual intercourse in such a way that the probability of conceiving a child increases dramatically. And practitioners of both war and medicine know that every strategic action has its likelihood of success and of failure. This is because one is choosing not a single moral outcome, but a nexus of relations that will shift the probabilities of progress or decline in one direction or another. Moral Principles as Generalizations The emphasis on the context of every decision highlights one of Lonergan’s key points: the good is always concrete. Whether it be from Platonic idealism, or from more recent arguments over moral principles, we tend to think of moral values as involving mandates that exist ‘out there somewhere,’ to which we need to conform. In scholarly discussions, those who emphasize deontology insist that moral value resides in moral principles, not in the consequences of one’s actions. In fact, moral decisions always have a context, and it is only in the concrete choice of taking this antibiotic, for example, that I choose health, or by deciding to pay my taxes that I choose honesty. This is not to say that the good is rediscovered in every context, as was argued several decades ago by those who favoured situation ethics. Yes, the good must be chosen anew in each situation, but this does not mean that previous judgments cannot serve to guide current judgments. We need to understand the relationship between generalized principles and concrete determinations. Any generalization is abstracted from a series of concrete instances. After a series of episodes in which someone suffered as a result of acting too quickly, the proverb ‘Look before you leap!’ was coined. Yet, under other conditions, over time, someone else concluded: ‘He who hesitates is lost.’ Both proverbs are generalizations, made from concrete insights in sets of particular circumstances, in order to sum up the wisdom at the heart of the matter. But as generalizations they are useful only to the extent that one has further concrete insights as to the applicability of the proverb in this situation, here and now. Generalizations – and moral principles are generalizations – arise from a series of concrete insights into value. They require further con-

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crete insights as to whether and how the principle applies in every new situation. The key to such latter insights is determining whether this situation – signing a new mortgage today since interest rates are unusually low and likely to rise again tomorrow – has characteristics that match the situations that elicited ‘He who hesitates is lost’ or ‘Look before you leap.’ The generalizations that form moral principles are not unlike the abstract laws of scientific theory. Out of a series of concrete instances, the physicist determines that, all things being equal, the laws of gravity operate in a certain way. Likewise, in a given set of experiments, a geneticist might discover just how a particular amino acid is created from a sequence of nucleotides to create a certain metabolic outcome. But whether this process, abstracted from this set of examples, is applicable to other, similar sets of circumstances requires further concrete insights. The law governing the metabolic processing of amino acids – or of gravity – is ‘true’ only to the extent that it is properly applied to the right set of concrete events. So moral principles and proverbs form a bridge between one set of circumstances and a similar set of circumstances in which the same kinds of choices and behaviour are warranted. Maxims such as ‘Treat no one as a means, but only as an end in themselves’ or ‘Direct harming of innocent life is wrong’ are important principles to keep in mind when designing health care systems or deciding when a respirator is to be turned off. But there are those who fail to see that such maxims require further application. Not surprisingly, then, they tend to argue moral issues as if determining the good at the level of principle automatically resolves concrete cases or problems of policy. There are genuine conflicts in how people would resolve concrete cases and in the underlying values they believe have priority in such resolutions. There are genuine differences in the moral principles by which people try to live and by which people think society ought to be governed. However, when it comes to determining moral value, advocating generalized principles only gets us part of the way. So far, I have insisted on two key points. The first is that moral action is not isolated in such a way that there is direct causality between action and consequence. Rather, given an array of possible courses of action, one’s choice of action only shifts the probabilities of further outcomes in one direction or another. Whether we like it or not, we live with an ethic of risk rather than an ethic of control. The second point is that moral knowledge and action take place in concrete contexts. While gen-

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eral principles of action can be delineated from these contexts and applied to new contexts, unless one has insights into concrete situations and recognizes the role of such insights, moral debate can become derailed. The Threefold Structure of the Good Several further clarifications are needed. In the above discussion, I have referred to examples of very specific choices, such as signing a mortgage or turning off a respirator. But there are also issues of mutual cooperation and public policy. One needs bankers and lawyers, nurses and doctors, who act in good faith in order to bring about the desired end. Someone in Ottawa sets the interest rates, and there are health care policies that make turning off respirators a legal option. So Lonergan distinguishes between particular goods and the good of order. Particular goods are the specific goods chosen in each instance. The good of order is the social system, the network of cooperative practices, and the policies behind these practices that make particular goods available on a regular basis. Simple examples of the good of order abound: everything from the accepted courtesy of shaking hands when meeting a stranger, to the system of traffic lights and the running of the subway trains. The good of order is often taken for granted, and attention is usually drawn to it only when the order breaks down. If an ice storm grounds all air transportation, making it impossible for you to carry on as you had planned, what is broken is not your particular good but the good of order that delivers the particular good to you. While we can all see the value of a system in which particular goods are repeatedly made available to many, orderliness alone is not the only value that determines the good of order. After all, as many have pointed out, the trains to Auschwitz ran on time. Embedded within particular goods and the good of order are terminal values – the ends or goals toward which these other goods are ordered. Thus, there is the task of standing outside the system of delivery of goods and asking: Just what is the ultimate purpose of such a system? Is it to make a few politicians rich? Is it to yield to the hedonistic desires of a wealthy few? Is it to provide quality of life and dignity for those who deserve it or for all society? Note a few things about the intersection of particular goods, the good of order, and terminal values. First, any one choice involves all three elements. I do not first choose a particular good, then decide on or appre-

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ciate the order that allows me to have it, and then evaluate it all based on ultimate objectives. Rather, when I pay my taxes on time I am doing many things simultaneously. For myself, I am keeping out of debt, perhaps even out of jail. I am satisfying my need for closure and a sense of integrity. At the same time I am endorsing a system in which everyone pays for social services, even though we might not avail ourselves of all of them. I am agreeing to support a government that I presume is working on my behalf. I am both contributing to and benefiting from the bureaucracy that enables the collection and dispersion of taxes. Yet I am not only participating in this good of order, I am supporting its overall goal: democracy and the distribution of responsibilities that come with earning a living. Were I to find out that the bulk of my taxes was lining the pockets of a single politician, I could show my disdain by withholding my taxes or lobbying against that politician’s re-election. Likewise, I could refuse to pay taxes if I believed that my money was paying for practices I find morally reprehensible, as did pacifists in the United States during the Vietnam War. Further, different political and moral philosophies highlight different aspects of this threefold congruence. Civil libertarians focus on particular goods and emphasize a system that will maximize the ability of each individual to go after his or her own specific goods. These people tend to overlook the fact that every individual choice also contributes in some way to a good of order. They themselves are endorsing a good of order that maximizes individual choices on the assumption that such choices are isolated events with no impact on the progress or decline of society as a whole. Utilitarians are well aware of the good of order, but determine the good according to what will be of most benefit to the widest pool of people. When this degenerates into a strict cost/benefit analysis, other goods, such as quality of life, the dignity of work, and selfdetermination, fall by the wayside. Deontologists – those who emphasize intrinsic value, duty, and the following of moral principles – focus on terminal values and what is at stake when certain practices or policies are undertaken. But, as I have discussed above, they tend to overlook the concretely embedded nature of value – that the values they want to endorse exist only within a network constituted by concrete choices, social cooperation, and practical policies as they occur in society. The point of highlighting this threefold manifestation of value is to caution us against getting waylaid by moral debate on just one or other of these dimensions. Choice, moral autonomy, and particular goods (e.g., a healthy baby) must be considered. Equality of access, efficiency

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and order, and an ambience of cooperation make up the good of order and are important objects of consideration. The deeper values or goals implicit in both particular goods and the way they are made available set the overall moral compass of a society. But in moral debate all three aspects need to be considered. Discussing principles alone only gets us so far. Debating the politics of the system that delivers health care, and tinkering with the bureaucracies that make up the good of order, are important endeavours; but they need to be understood within a critique of underlying values. Delighting in the birth of a healthy child or in the remission of symptoms in a child with a genetic disease are worthy events; but they need to be understood in relation to the system of cooperation and cultural meaning they are endorsing. Pluralism, Bias, and Different Kinds of Differences One area is left for consideration. This has to do with the prevailing cultural assumption of relativism and the virtue of tolerance. Although this is a huge area of discussion in scholarly circles, I want to highlight just a few points. First, while an attitude of humility and open dialogue is warranted, especially on weighty ethical issues, decisions require a closure that limits open-ended pluralism. In determining what to do in a particular medical case or in setting hospital policy or funding initiatives, the discussion and debate must come to an end. This is true of all decisions: after weighing possibilities and considering risks, moral deliberation ceases because one decides, ‘Yes, I will sign that mortgage (buy that car, speak up in a meeting, etc.).’ And we do so out of the conviction that we are doing the right thing. There is a normative standard implicit in our action, defying the notion that no single perspective is correct. So while an attitude of openness and dialogue is virtuous in discernment, decision and action endorse the notion that a correct position can be taken and legitimately defended. This leads to the second point, which is that varying perspectives are not necessarily biased. It is commonplace today to hear people refer to the fact that everyone has a bias, meaning that each person has a different viewpoint. But one must distinguish between perspectives, which result from different horizons – different points of view – and biases, which result from prejudice. ‘Bias’ has a distinctly negative connotation and is something that needs to be overcome. Perspective is inevitable and is simply the result of being finitely located in one social location rather than another.

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Lonergan discusses bias as the failure to ask all the relevant questions. Thus, bias does have to do with prejudice: when biased, one prejudges a situation without considering all the relevant aspects of it.3 So, individual bias is apparent when one asks all the questions relevant to one’s own well-being but disregards questions about the needs of others. Group bias occurs when the concerns of a group are addressed without consideration of other constituencies. General bias, as Lonergan calls it, is the bias against asking theoretical questions and involves faith in common sense to the exclusion of every other perspective. These kinds of bias need to be recognized and overcome. In contrast, the perspective of one’s horizon is simply the fruit of one’s incarnate reality. One cannot see beyond the horizon of one’s situation. Such limitation is quite different from bias. It is not a choice or a wilful refusal to consider all the relevant questions, but a morally neutral fact of life. This distinction is important because in moral debate one must carefully discern – both in oneself and in others – which limitations are due to wilfulness, and which are merely the neutral differences of perspective. A third point thus arises, which has to do with recognizing different kinds of differences. When two people or groups disagree, there are three reasons why they might have a conflict. One kind of difference is merely developmental.4 My knowledge of genetics is sketchy at best, so you and I may differ in the understanding of an issue simply because you are more knowledgeable than I on this subject. While the tension involved in these kinds of differences can be dramatic (hence, the perpetual generation gap), such conflicting horizons can, in principle, be overcome through growth and education. A second set of differences involves what I have discussed above as perspectives. These differences are ultimately complementary – an architect, a real estate agent, and a homeowner may have very different ways of looking at the same house but, at bottom, there are no serious disagreements. In the third and final set, the differences are diametrically opposed to one another. What you consider good, I consider bad. What you claim to be virtuous, I insist is villainous. Further education, or trading places so that we can look at the issue differently, does no good because we hold totally contradictory positions. The only way we will agree is for one of us to be converted to the other’s position. Making these distinctions is helpful for moral debate. On the one hand, it points out that taking a position, and defending it as correct, is not necessarily being intolerant, dogmatic, or biased. The issue is not

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whether one takes a position, but whether, in taking a position, one has asked all the questions relevant to the issue at hand. On the other hand, recognizing that not all differences are ultimately contradictory can move a discussion forward. Indeed, in any debate, just sorting out which differences require further education, which require empathy, and which are genuinely contradictory is a major step forward. Conclusion In summary, I have tackled three sets of distinctions. The first involves highlighting the dynamic and contextual nature of moral knowledge and decision. The dynamic nature of moral value means that we are always choosing a nexus of relations and cannot deceive ourselves into an ethic of control. Rather than producing a single outcome, our moral choices create new conditions of possibility for further progress or decline. The contextual nature of value emphasizes that the good is always concrete. Moral principles can and must be derived from these concrete circumstances. The discussion of such moral principles is often the heart of the matter in moral debate. But principles alone get the discussion only so far; they must be applied appropriately to any new set of circumstances. Second, I introduced the distinctions and relations among particular goods, the good of order, and terminal values. Some moral debates will focus on one or other of these aspects, and rightly so, as long as the other aspects are not overlooked. There is no point in a flawless system of delivery in health care if the particular goods that result are not those which the participants desire. Likewise, such a good of order, and the particular goods it repeatedly makes available, must come under the scrutiny of underlying values and goals. But discussion of ultimate ends and moral principles will be cut off from reality if their concrete manifestation in particular goods and in systematic arrangement sustaining the recurrence of such goods is not recognized. Finally, I have taken on the notion that moral debates have no resolution owing to an infinite regress in the plurality of views present at the table. While the correct view cannot necessarily be determined in advance of dialogue, this does not mean that it is impossible to determine a correct position. While tolerance and openness to data or questions that one has previously overlooked must be the good-faith presumption of all moral debate, this does not mean that taking a position is a matter of bias. ‘Bias,’ as a negative term, can be distinguished in

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meaning from ‘perspective,’ a neutral term, and in any given instance the difference between the two has to do with whether one has been open to considering all the relevant questions. Even so, it is possible that, given both good faith and tolerance, parties will discover irreducible differences. But it is important to sort out which differences are merely developmental, which are complementary, and which are genuinely contradictory. All these points will remain merely academic unless one can apply them to some concrete example or examples in one’s own experience. Thus, one could think of a recent news report, radio discussion, professional conversation, or personal dilemma and see if these distinctions, or the questions below, help one analyse that situation. Questions for Consideration in Moral Analysis 1 What new conditions of possibility does this policy, action, practice, etc., create? 2 What is the likelihood that the desired outcomes will result? 3 Are there those in the discussion (including oneself) who mistakenly function with an ethic of control? 4 Identify the underlying values or moral principles at stake in the debate. Then ask what concrete situations might have given rise to this principle. Is the current situation a good match for the principle under discussion? Are there other principles that might better apply to these particular circumstances? 5 Are there any new principles to be articulated from this – perhaps never before confronted – current moral issue? 6 Take any concrete instance of a good. Can you see the good of order implicit in it? Can you articulate the terminal values that make it good? 7 In any debate, can you identify the particular goods, the good of order, and the terminal values involved? 8 Can you give instances in which you can distinguish bias from perspective? If you believe bias is involved, which relevant questions are being neglected? 9 Are the differences that arise in any given debate developmental, complementary, or genuinely contradictory? Which are the contradictory views? What means of persuasion are valid for converting others to one’s own position?

Response 89 NOTES 1 Kenneth R. Melchin, Living with Other People: An Introduction to Christian Ethics Based on Bernard Lonergan (Collegeville, MN: Liturgical Press, 1998). 2 Ibid., 40; this text is italicized in the original. 3 Note the key word here is ‘relevant,’ since there are always further aspects to consider, further questions to ask. 4 Lonergan calls these differences ‘genetic,’ but given our use of this term in a different context, I prefer ‘developmental.’

RESPONSE: Moira McQueen To decide upon the character of moral value, one must explore many possible theories of moral value. Crysdale’s paper is based on Lonergan’s cognitional theory, a way of showing how we determine notions of moral value. Crysdale briefly considers other philosophical approaches, and it is difficult to summarize these other approaches in a way that does justice to them. While the fact that they have different criteria can be demonstrated, the question that arises for further debate is whether any one explanation is more adequate than the others and so justifies our use of it in preference to other explanations. The Quest to Know versus Applied Science In the first paragraph, Crysdale provides the context for her paper: ‘The quest to know, simply for the joy of understanding and appreciating the mystery of nature, has given way to applied science.’ I think it is important to avoid generalizations in such a vast field and to recognize the contributions of science to human development, including the many higher integrations that scientific discoveries and methodologies have achieved. A great part of the whole field of health care, for instance, is applied science, and many of us have reason to be grateful for that. Of course we need to question commercialization, privatization, patenting of human body parts, and similar problems, but we must study the applications of research and technology ‘dynamically and in context,’ as Crysdale suggests. I would widen the social and cultural context here, remembering that science and technology do not exist as separate concrete entities; nor is there a monolithic entity named ‘big business,’ or, for that matter, ‘the Church.’ These realities are not objec-

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tified bodies apart from us; rather, we are part of them, and we often have a say in their operative values. We are all responsible for shaping these values in the field of pure or applied science and in other fields, whether or not we are willing to take on the task. The major question facing us, then, is how do we discern which values truly promote human flourishing? Generalized Moral Principles A key point of Crysdale’s paper is that context is the most important factor in arriving at norms. We are always in some process of change, and that very dynamism adds to the complexity of working out what fits in any new context. Must we, then, constantly reinvent the moral wheel? Do any moral principles stand firm, regardless of context? Crysdale agrees that previous judgments can be used to guide current situations, but she also claims that most moral principles are generalizations. She uses some well-known maxims to show how such generalizations evolved from experience. There is much truth in this. For example, there is the Golden Rule: ‘Do unto others as you would have them do unto you,’ which demonstrates a basic wisdom about human relationships. The Christian ethos, on the other hand, makes demands that far outstrip such a basic response, calling on us to love our neighbour, regardless of how that neighbour treats us. We can see that, from this perspective, principles built on generalizations go only so far. Crysdale finds deontology and relativism wanting: the former stresses intrinsic values and tends to overlook the concrete realities involved, and the latter involves only generalized principles. ‘Virtually Unconditioned’ Norms The moral debate continues, however, as to whether or not there may be some principles that could be classified as ‘practical absolutes’ or ‘virtually exceptionless norms.’ Lonergan would use the term ‘virtually unconditioned’ here. A classic example is Kant’s conclusion that we should never treat a person as a means, but only as an end in himself or herself. We may well ask if that can ever be wrong. Until that is shown, I think that there are some goods that can be held as principles applicable in every context. Of course that does not help us decide on specific action, but it shows the value, or good, that our concrete norms must preserve. Increasingly, moral theologians have become open to the

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inductive approach for evaluating norms, but that does not mean they reject the possibility of objective norms. The ‘both/and’ approach for formulating norms seems more appropriate; it means that we can remain open to the possibility that some goods may be determinable at the level of principle, and it stresses the embedded reality of our values. Action and Consequences Another key point of Crysdale’s paper is that ‘moral action is not isolated in such a way that there is direct causality between action and consequence.’ One is trying to achieve something that ‘shifts the probabilities of further outcomes in one direction or another,’ although the author goes on to say that ‘particular goods are the specific goods chosen in each instance.’ This implies causality, and while it is true that sometimes no direct causality exists between what I do and the consequences, at other times the correlation is present. Actions can have immediate and long-term unforeseen consequences. If I angrily punch a friend in the face, I will (probably!) set up ‘the probabilities of further outcomes.’ I may be sued, I may have to pay medical bills, I may lose a friend, my reputation may suffer, and so on. Immediate results of my actions may include my friend’s immediate physical pain, a broken jaw or nose, temporary or permanent disfigurement, and physical and emotional shock. Causality, as well as the ‘shift in probabilities’ noted, would seem to be an important part of some of my moral actions. Perspective and Bias Crysdale does an excellent job of marking the vital difference between perspective and bias, which has such important implications for moral debate. This is an area where moral arguments are sometimes dismissed on the grounds of, say, religious bias. While pluralism is a reality, we must be able to find common ground to evaluate which arguments are reasonably based, and which are based on one or more of the different biases identified by Lonergan. Conclusion Crysdale concludes that ‘it is possible that, given both good faith and tolerance, parties will discover irreducible differences.’ This is where the most difficult task of moral discernment begins. There is always a

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gap between theory and application. Lonergan’s approach of looking for the ‘virtually unconditioned’ judgment goes a long way in handling this seemingly unanswerable dilemma. Despite the tolerance expected of pluralism, there remains the search for the missing piece of the jigsaw, for further questions, for higher integrations. One of my professors in moral theology recognized the dangers of claiming absolutes, but reminded us that it is illogical to think that moral dilemmas can have several answers, all of which are correct – one of them must outweigh the others in terms of best serving human development. That is why some moral debates continue for decades. Despite apparent civil and political consensus about some issues, further questions may be raised, or new information may become available from the human sciences. While recognizing the reality of pluralism in ethics helps us coexist in society, it should be seen as a stage in the continuing journey toward the fullest answers possible for human flourishing.

6 Religion as the Dynamic Horizon of Moral Discernment gordon rixon

How are we to understand the role and significance of religion within the diverse, at times clashing, matrices of meaning and value that are formed by the kaleidoscopic intersection of the sciences, cultures, and philosophies? Does one’s religious commitment function as an ultimate arbiter of truth that, as such, is able to evaluate and correct the contributions of the natural and social sciences? Some have argued that the autonomy of the methods and norms of the various sciences is necessary for the advancement of knowledge. Does one’s religious tradition afford insights adequate for the amelioration of the meanings and values supplied by the historical, cultural, and philosophical disciplines? Some would argue that widespread adherence to a religious tradition is an obstacle to world peace and security, citing ample historical evidence to support their position. Is religion, then, a hegemonic encroachment, requiring vigorous resistance? Or is it, perhaps, a dysfunctional oddity to be completely ignored or easily dismissed? And if we acknowledge the legitimate autonomy of the sciences and confess the evident historical shortcomings of religious practice, how are we still able to assign to religion a constructive role in the public process of moral discernment? A Foundational Response I propose to respond to these questions by exploring an aspect of Bernard Lonergan’s methodologically grounded intellectual project, within which he develops an account of the dynamic core of the human subject’s intentional operations, of the immanent intelligibility of emergent world process, and of the fuller intelligibility of transcendent knowl-

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edge. While consideration of doctrinal affirmations remains important for our discussion, I concentrate on an examination of the religious horizon within which the transforming subject appropriates, and sometimes contributes to, the development of moral teaching in the faith community. I focus my explorations, then, on considerations that Lonergan would locate within the functional specialty he calls foundations. The Desire to Know Viewed within the luminous context of the totality of his life’s work, Lonergan’s overall project can be likened to a series of musical variations.1 Much like Sergei Rachmaninoff in his treatment of Niccolò Paganini’s twenty-fourth violin caprice in the twenty-four variations of his Rhapsody for piano and orchestra, Lonergan addresses a broad range of themes by persistently revisiting and elaborating a thematic idée fixe. His treatment of the philosophy of history, economics, introspective psychology, Catholic dogma and doctrinal development, the philosophy of mathematics, the philosophy of science, philosophical anthropology, cognitional theory, epistemology, metaphysics, ethics, hermeneutics and the ontology of meaning, transcendental knowledge, the philosophy of art, social structures, culture, theological methodology, and social communication are all anticipations or amplifications of his pivotal treatment of the human being’s unimpeded, unrestricted desire to know. ‘Thoroughly understand what it is to understand,’ he wrote in the Introduction to Insight, ‘and not only will you understand the broad lines of all there is to be understood but also you will possess a fixed base, an invariant pattern, opening upon all further developments of understanding.’2 The discussion that follows is focused on Lonergan’s thematic idée fixe, the unimpeded, unrestricted desire to know, especially in its relation to the other spontaneous desires that inform actual, practical human living. For Lonergan, the unimpeded, unrestricted desire to know is the pervasive sense of intentional wonder that orients the human being to a fulfilment that lies beyond the self; it is operative as the person notices the perceptual data arising from sensation and her own conscious activity, seeks to understand by formulating hypotheses about the possible intelligibility of such data, critically evaluates the evidence supporting hypothetical understanding, and proposes deliberative, responsible action that appreciates and advances an expanding notion of the good, which may include, but may also exceed, the immediate self. Unbounded

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intentional wonder, unimpeded by bias, intends to know everything about everything. It motivates the research of the scientist spending long hours at the laboratory bench; the ingenuity of a technician solving a perplexing production problem; the investigations of a scholar attempting to enter into the ethos of a distant, largely forgotten culture; the creativity of the poet expressing the noble and tragic aspirations of a nation; the receptivity of the mystic who passes through the cloud of unknowing into unitive prayer. Unbounded wonder includes truth, goodness, and beauty within the range of its desire. Wonder inspires specific acts of noticing, understanding, critical evaluation, and responsible action, even as reach continues to exceed grasp. Intentional wonder is not content to ponder simply the possible or the coherent, but intends to understand ever more correctly. If these remarks give some indication of the results of Lonergan’s thematic exploration, one should not conclude from them that all he has to offer is a model or a theory of human knowing. Rather, Lonergan is proposing a program of reflective introspection, leading to critical self-appropriation and refined intentional praxis.3 The Desire to Know and Other Desires: The Embodied Subject The human being is not pure spirit. Unbounded intentional wonder coexists with other desires arising from our physical embodiment, social intersubjectivity, and participation in cultural meanings and values.4 One should not presume, as if it were some axiomatic truth, that these other desires are unruly subalterns, ever threatening to arrogate the superintendency of wonder. The relationship between wonder and the other desires is more that of a taut but fragile mutuality. Human perception is not shaped simply by unadulterated intellectual curiosity. Noticing is influenced by previous, virtually embodied, patternings of experience, which select and organize the presentation of data within consciousness. Lonergan observes that people cultivate various patterns of experience, including the biological, aesthetic, artistic, dramatic, intellectual, and mystical. Each of these patterns is a specialized adaptation of noticing, which conditions the subsequent activities of hypothetical understanding, critical judgment, and responsible deliberation. And while such specialized adaptation represents a disciplined competence, established facility and absorption in one pattern or other can sometimes give rise to halting or uneasy transitions to other configurations of attentive noticing. For example, the scientist, practised in dis-

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passionately accurate empirical measurement, may experience some discontinuity as she shifts to the dramatic pattern of experience and attends to the affective movements within her own interiority. Again, the mystic, given to long hours of imageless apophatic prayer, needs to recall that love is also expressed in concrete service. Moreover, in addition to the inevitable, but potentially creative, tensions that accompany the specialization of attentive noticing, there are also ever-present possibilities of distortion and disassociation, which arise when bias represses the presentation to consciousness of needed, but unwanted, data and feeling. The human subject is never other than an embodied subject as the operations of unbounded intentional wonder are unfolding.5 The Desire to Know, Community, and the Other The human being’s participation in a community of shared meanings and values is located, first, in spontaneous intersubjectivity.6 Those closest in experience share the affective responses and sensible data from which common appreciations of meanings and values arise. Simple bodily gestures and affective displays combine with shared experiences to help construct a conventional worldview within which shared responses to the practical challenges and aesthetic desires of human living emerge. Elaborate interpretive procedures are not required to understand one’s intimates. Wonder informs this primordial achievement of community. But wonder also invites the broader consideration of the more distant other, the stranger, one who does not share one’s own brand of common-sense mentality and whose worldview and solutions to the problems of human living appear to us as a series of impenetrable puzzles. Others are able to be human in ways that implicitly question some of the most basic presuppositions of our own worldviews. And because wonder is present, the palpable predisposition to privilege oneself and those closest to one is balanced by the imperative to extend to the other a genuine hospitality that goes beyond mere self-interest, an imperative that is elaborated in the exigence to envision and implement intelligent and responsible solutions that accommodate the needs and aspirations of all. Inevitable and often tragic conflicts emerge between personal aspiration within intimate expressions of community, on the one hand, and social responsibility within more inclusive extensions of society, on the other. In this conflict, the human subject remains socially and historically situated, as the conventional boundaries of human living are explored, tested, and expanded.

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Wonder, Controls, and the Tension between Achievement and Anticipation The emergence of interdependent solutions to the challenges of human living is not predestined to proceed simply according to the social and political controls of practical compromise and possible consensus formation. Historians attest to the axial shift that takes place in a human society as reflexive cultural controls are introduced and developed. The cultivation of meanings and values becomes explicit and thematic, and is supported by specialized appreciations of beauty.7 Debate over ultimate questions of purpose becomes the horizon within which more immediately practical social and political controls are evaluated and advanced. People become better able to influence the social and cultural context that supports and limits the expression and realization of their aspirations. Cynthia Crysdale’s discussion of deontological, utilitarian, and libertarian moral stances points toward the underlying assumptions binding the purpose and nature of human activity within world process. The definition of human nature is no longer limited by the accidents of previous expression. The explication of human society is no longer constrained by the tragic incidents of history. Unbounded wonder can go beyond prior achievement and failure to realize deliberately new possibilities. Still, the cultural traditions in which a person participates are not wholly unfettered edifices of imaginative creativity. The aesthetic aspirations of human culture are bounded by the ecological exigencies of a finite order; the meanings and values we construct do not cast aside the strictures of cosmic process. Human beings remain finite and mortal even as they aspire to the infinite and eternal.8 Thus, unbounded intentional wonder stands in a complex relation to what, in effect, is its own partial unfolding in embodied perception, social intersubjectivity, and reflexive cultural controls. It not only informs the expanding achievements of attentive noticing, intelligent understanding, critical evaluation, and deliberative assessment, it also reaches out toward more comprehensive patterns of intelligibility and more significant orders of value. Initial perceptions invite new questions that may lead to revisions in subsequent perceptions. The identity and security of family and immediate friends provide one with the confidence needed to encounter the stranger and the stranger’s worldview. The cultivation of aesthetic appreciation invites new levels of interior awareness that kindle previously unimaginable possibilities of purgative,

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illuminative, and unitive prayer. In effect, wonder proceeds within a tension between past achievements, expressed in particular delimited acts, and vigilant self-transcendence, ever anticipating something more that is not yet fully defined. While this tension can be maintained within a creative tautness, provoking renewed but still transitional acts of noticing, understanding, critical evaluation, and deliberative assessment, there seems to be a predilection to resolve the tension in favour either of already defined achievement or of unconditioned possibility.9 The attainments of personal integration, intersubjective commitment, and culturally approved meanings and values can become the terminal points of stilted development. Alternatively, the anticipation of freely envisioned possibility can neglect its necessary grounding in embodied perception, in social commitment to a community of peers, and in the embrace of a tradition of meanings and values. The taut mutuality of defined achievement and open anticipation finds release either in the denigration of trivial coherence or in the abandon of reckless adventure. Wonder, Conversion, and Creative Tension between Achievement and Anticipation My response to the questions I initially framed about the possible role and significance of religion within the contemporary context focuses precisely on the preservation of the creative tension between an already defined achievement and an open anticipation of increased comprehensive intelligibility and more significant orders of value. The maintenance of this tension provides the horizon within which specific achievements are appreciated and further developments are contemplated and apprehended. Apart from such an appreciative and anticipatory horizon, the authentic achievements of the past can be misappropriated, and the fecundity of future possibility can be rendered barren. A thorough consideration of the specific methods, norms, and achievements of the natural, technological, and human sciences, and of the humanities, including the cultural and philosophical disciplines, as well as of doctrinal, speculative, and moral theology, remains important for a complete response to the questions initially posed. Yet immediate attention must remain fixed on the existential praxis that nurtures the authenticity and fecundity of the dynamic process that contributes to the advancement and integration of all the disciplines. In effect, we are considering the (re)orientation of unbounded intentional wonder as it

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navigates within the valence of achievement and possibility. My suggestion is, of course, that a proper orientation of wonder is equally important for the scientist, the technician, the ethicist, the mystic, and the theologian. Within the functional specialization of foundations, Lonergan undertakes a thorough examination of the developmental process by which unbounded intentional wonder remains true to its orientation.10 His discussion promotes further reflexive appropriation of the thematic idée fixe and refined praxis, as he elaborates a triple reorientation in terms of intellectual, moral, and religious conversion.11 These conversions form the spiritual space within which the authentic meaning of past achievements is appropriated and the fruitfulness of future contributions is anticipated and nurtured.12 For Lonergan, intellectual conversion is the responsible appropriation of a methodologically grounded critical rationality. Attentive noticing, intelligent formation of hypotheses, critical evaluation, and responsible deliberative action promote fruitful, progressive, and self-corrective learning, which eschews incomplete or misrepresented cognitional process, epistemology, and metaphysics. Knowing is not reducible to noticing, or to understanding and formulating hypotheses, but remains a combination of noticing, understanding, and critical evaluation.13 Moral conversion is a deliberate affirmation of value based on an ascending scale of relative goods. Critical reflection on biological, social, cultural, personal, and religious values replaces a pragmatic calculus of pleasure and pain. Critical knowing is complemented by deliberative assessment.14 Religious conversion is a person’s unrestricted response to the gracious, unconditional love of the Creator. The religiously converted person makes an unconditioned commitment to the intelligibility and goodness of creation in its relation to its Creator. Right appreciation of self, others, and all of creation is discovered through an expanding comprehension of the complete intelligibility and absolute value of the Creator. Trust in the intelligibility and goodness of the Creator orients the further knowing and deliberation of the creature.15 Robert Doran complements Lonergan’s work by identifying a fourth, psychic conversion, indicating the transformation of human perception, presenting constructively within consciousness the data and feeling arising from sensation and cognitive activity. Transformed noticing affords new possibilities for understanding, critical evaluation, and deliberative assessment.16 I suggested previously that, viewed in the luminous context of his

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life’s work, Lonergan’s overall project can be likened to a series of musical variations. The development of the praxis and the thematic appropriation of the idée fixe accompanies Lonergan’s topical achievements. The four conversions are repetitions that orient, develop, and integrate the existential praxis of the self-transcending, but still limited, knower, doer, and lover. 1 Psychic conversion is the transformation of the conscious presentation of data and feeling that provides more helpful images and symbols for the subsequent intelligent inquiry that produces possible hypotheses. 2 Intellectual conversion is the responsible appropriation of critical rationality that calls forth a balanced, methodological approach to the evaluation and assertion of hypotheses. 3 Moral conversion is the transformative commitment to properly deliberative inquiry that complements judgments about truth with a fuller process that issues in responsible judgments about value. 4 Religious conversion is the transformation that promotes the ongoing methodologically oriented inquiry that extrapolates from an emerging appreciation of the immanent intelligibility and value of world process to raise further questions about complete intelligibility and ultimate value. Augustine’s Confessions: A Concrete Illustration of the Conversion Process Saint Augustine’s Confessions is a classic account of the conversion process. It can be read as an invitation to readers to reflect on their own experience of intellectual, moral, religious, and psychic conversion. 17 Augustine’s account first explores the barrier to belief presented by his early, inadequate intellectual stance that identified human cognition with sensible perception, and the real with what has extension and duration.18 Restricted by these assumptions, Augustine found the Manichean concept of the universe animated by two material principles struggling for dominance to be unassailable, and so he was unable to apprehend values that were not reducible to the sensible. It is only when the young Augustine came to acknowledge that human intelligence can comprehend immaterial intelligibility that he was able to move on in his journey to faith, conceiving the possibility of a truly transcendent being and the existence of spiritual values.19

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Intellectual reorientation alone, however, did not free Augustine from his enslavement to sensible pleasure, which led him to objectify the men and women he encountered as means to his own gratification. Chapter 8 of the Confessions relates the moral transformation that takes place in Augustine as he wills effectively to do the good he was previously unwilling to do, serving God above everything, as he realizes the true value of friendship with others. Previously convinced of God’s existence, Augustine now integrates his intellectual conviction with his moral behaviour.20 Still, the reorientation of Augustine’s intellectual and moral life does not reach its full harmonic development without the further transformation that occurs in the mystical encounter of unitive love. In Chapter 9 of the Confessions, he relates his ascension (with his mother Monica) toward the divine through the exchange of unconditioned love.21 At least for a moment, Augustine is freed from the limitations and achievements of his culture, to be united with God in mystical prayer. Sharing the experience of mystical union with his mother shatters the Neoplatonic expectations of his culture and prepares Augustine to serve as a bishop, and to do so with greater freedom and creativity.22 Augustine moves well beyond the social expectations for those in leadership roles, as he not only professes his faith but also confesses his sinfulness, thereby serving an agenda much larger than that of preserving his status in a merely earthly social institution. Finally, Augustine’s previous intellectual, moral, and religious transformations call forth a reintegration of his embodied sensibility. In Chapter 10 of the Confessions, Augustine indicates that each of his five senses, which had been transfixed as the gateways for disordered sensuality, became pathways on which he encountered the divine. For the maturing Augustine, the entire universe has become a personalized expression of the Creator’s love.23 Augustine, who learned so painfully to serve God above all things, now finds God in all creation. The Proper Contribution and Transformative Power of Religious Conversion My interest in religious conversion, however, does not remain within the bounds of a carefully ordered narrative leading from intellectual to moral to religious to psychic conversion. Human living is more complex than even the most helpful narrative suggests. Rather, my focus is on the transformative power of religious conversion as an anticipatory commit-

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ment to complete intelligibility and ultimate value that orients and integrates the existential praxis of the human knower, doer, and lover. As well as being the pinnacle of a process, religious conversion remains its most fundamental principle. Like Augustine, Lonergan describes a recurring process of withdrawal into the transformative mysticism of unitive love and a return to renewed presence and action in the world.24 If religious transformation is an anticipatory fulfilment of wonder in the exchange of unconditioned love, it is also a radically transformative terminus. Religious conversion allows the expansive freedom to leave behind the world already constituted through personal integration, intersubjective commitment, and culturally supported meanings and values, in order to rediscover the still particular unfolding of unbounded intentional wonder in yet further transitional achievements. Together, but especially as enlivened by religious conversion, the four conversions constitute the pervading principle by which the taut but fragile mutuality between past achievement and open possibility is maintained, strengthening the commitment to the methodological integrity by which the sciences and the humanities advance in understanding. Conversion also enables the appropriation of a particular religious tradition and its doctrine. The emerging freedom and clarifying orientation of psychic, intellectual, moral, and religious conversion make it ever more possible for a person to encounter and respond to the truth mediated by a religious tradition. For a Catholic, comprehension of the truth of revelation, safeguarded by the definitions of church doctrine, invites ongoing reflection and growing understanding. While finite acts of human understanding will never exhaust the meaning of the mysteries of faith, it is possible to develop a fruitful understanding through the use of natural analogies, the exploration of the interconnection of the mysteries, and the attempt to develop an ultimate, eschatological perspective.25 It is also possible to correct misunderstandings introduced through the lack of conversion in any of its four forms. The comprehension of doctrine and the development of some fruitful understanding presume that the person has fallen in love with God and is aided by an emerging appreciation that such love entails an anticipatory commitment to the intelligibility of world process and to its goodness or value.26 Conversion and Ethical Discernment This discussion of a notion of transformative conversion, enlivening the taut mutuality of past achievement and open possibility, and pro-

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ceeding to further concrete accomplishment, points to a way of creating an inclusive public space for ethical discernment. I have argued that psychic, intellectual, moral, and religious conversion, not reducible to the exclusive domain of any particular religious tradition, informs an expanding commitment to the unrestricted discovery of truth and the unconditioned affirmation of value. Religious conversion, in particular, frees the human subject to balance detachment and commitment to transitional achievements, while unbounded intentional wonder proceeds within this shared spiritual space. This freedom is needed as much for the (re)appropriation of the authenticity of past achievement as it is to make future contributions. Such freedom is no less important for the theologian than it is for the ethicist, the scientist, or other scholars. No field is invulnerable to the misappropriation of past achievement or the obstruction that can result from partial achievement or unmitigated error. Those who would appropriate and sometimes contribute to the development of any field of inquiry must inevitably acknowledge the demands inherent in a commitment to the ongoing conversion that supports the development of methodological integrity.

NOTES 1 Elsewhere I have suggested that Lonergan’s life’s work can be likened to a series of Ignatian repetitions, that is, a gradual complexification and synthetic integration that follows upon the creative variation of a reflective approach to the same or similar matter; see my ‘Derrida and Lonergan on the Human Subject: Transgressing a Metonymical Notion,’ Toronto Journal of Theology 18/2 (2002) 213–29. 2 Bernard Lonergan, Insight: A Study of Human Understanding, vol. 3 of Collected Works of Bernard Lonergan, ed. Frederick E. Crowe and Robert M. Doran (Toronto: University of Toronto Press, 1992) 22. 3 Ibid., 12–13. 4 Ibid., 232–69. I am also guided by Robert M. Doran, Theology and the Dialectics of History (Toronto: University of Toronto Press, 1990). 5 Lonergan, Insight, 196–231. 6 Bernard Lonergan, Method in Theology (Toronto: University of Toronto, 1999), 57–61. First published by Darton, Longman & Todd, London, 1972. 7 Ibid., 28–9.

104 Gordon Rixon 8 Doran, Theology and the Dialectics of History, 500–26. 9 See Lonergan’s discussion of finality as operator and integrator in Insight, 470–76. See also Doran’s discussion of the dialectic of contraries and the dialectic of contradictories in Theology and the Dialectics of History, 9–10. 10 Lonergan, Method in Theology, 267–93. 11 Ibid., 237–44. 12 For an insightful discussion of the significance of the functional specialty of foundations for the retrieval of a community’s past and its further development, see Catherine Clifford, ‘Lonergan’s Contribution to Ecumenism,’ Theological Studies 63 (2002) 521–38. 13 Lonergan, Method in Theology, 238–40. 14 Ibid., 240. 15 Ibid., 240–44. 16 Doran, Theology and the Dialectics of History, 8–9. 17 I am guided here, for the most part, by the insights of Matthew Lamb. See, for instance, ‘Challenges for Catholic Graduate Theological Education,’ in Theological Education in the Catholic Tradition: Contemporary Challenges, ed. Patrick W. Carey and Earl C. Muller (New York: Crossroad, 1997) 114, and ‘Wisdom, Faith and Reason in St. Thomas Aquinas: The Challenge of John Paul II’s Fides et Ratio,’ Fides Quaerens Intellectum 1 (2001) 167. Lamb focuses on the three conversions as identified by Lonergan and does not differentiate a fourth, psychic conversion. He would acknowledge the influence of the three conversions on the mediation of spontaneous sensibility in consciousness. Lamb is preparing a book that will explore further the role of the conversions in Augustine’s thought. 18 Augustine, Confessions, ed. Maria Boulding (New York: New City Press, 1997), VII, 1, 1. 19 Ibid., VII, 17, 23. 20 Ibid., VIII, 1, 1. 21 Ibid., IX, 10, 24. 22 For an informative discussion of the cultural context of Augustine’s mystical experience see the footnote supplied in Augustine, The Confessions, 228, note 103. 23 Augustine, Confessions, X, 27, 38. 24 Here Arnold Toynbee is the more proximate influence on Lonergan; see Arnold J. Toynbee, A Study of History: Abridgment of Volumes I–VI (London: Oxford University Press, 1947) 209–40. 25 Dei Filius, no. 4. 26 Fides et Ratio, nos. 14–15.

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RESPONSE: Leo Walsh To appreciate Gordon Rixon’s fine paper, one must read it in the context of the whole conference. Rixon deals with the question of how we are able to assign to religion a constructive role in the public process of moral discernment. While acknowledging the importance of doctrinal affirmations, he concentrates on examining the religious horizon within which the subject undergoing transformation appropriates and sometimes contributes to the development of moral teaching. Through his progressive exposition of Lonergan’s teaching on the person’s unimpeded, unrestricted desire to know, we come to recognize that religion is an integral dimension of the human quest for meaning, truth, and goodness. I will make some comments that may complement what Rixon has laid out for us. My commentary will include material from John C. Gallagher’s unpublished 1975 paper, ‘A Philosophy of Religion.’1 Fencing In Meaning When we assert that we know something, we do not assert that we know everything about that thing. Indeed, we use concepts to put a fence around what we know and refer another person to the content of this concept, not to what none of us knows. For example, when I say ‘I,’ I do not know all about this ‘I,’ and neither does anyone else. But we can refer to ‘I’ and know the content of the fenced-in meaning. It is the same with anything we say. For example, I might say, ‘I painted this wall.’ I do not know everything there is to be known about the paint. (Who invented this particular paint? How was it made? How much do the workers who manufactured it earn? The questions are endless.) The same is true of questions about ‘wall.’ What is not often referred to is the faith involved in these or any other statements or questions. We have faith that what we do not know will not contradict what we do know. Of course, we can be mistaken on occasion, but that is not the point at stake here. We are speaking about our faith that what is has meaning, that all is not mindless chaos. Now, if we accept this of proximate meaning, it is only logical that we accept the same of ultimate meaning. It would be absurd for proximate meaning to hold firm if it were unsupported by ultimate meaning. (I am taking as accepted that religion is the dimension of ultimate meaning in human experience.) In other words, atheism and agnosticism are less logical than faith in a transcendent being.

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Proximate and Ultimate Meaning Of course, this does not mean that we can rationally argue ourselves or anyone else into faith in God. Faith in God requires initiating grace and a person’s self-committing response. And it certainly does not substitute for the love of God poured into the human heart by the Spirit. It does, however, mean that logically one should be able to move beyond present meanings to transcendent proximate meanings and to ultimate meaning. Rixon says the following of religion: My response to the questions I initially framed about the possible role and significance of religion within the contemporary context focuses precisely on the preservation of the creative tension between already defined achievement and an open anticipation of increased comprehensive intelligibility and more significant orders of value. The maintenance of this tension provides the horizon within which specific achievements are appreciated and further developments are contemplated and apprehended.

Note, however, that we have not been left orphans in our pursuit of ultimate meaning. There is much that we do not know, of course, and much that is preconceptual. But in the relationship of Christian faith to ultimate meaning, we believe that God has unveiled part of the mystery of God’s self to enable a relationship between God and human beings. Anyone’s understanding of ultimate meaning will impact on his or her perception of proximate meaning; so too for the Christian. How exactly that plays out is the topic of John Dool’s essay.2 Conclusion Naturally, one’s perception of ultimate meaning does not allow one to determine the precise content of proximate meaning. For example, ultimate meaning does not help to decipher the human genome. But when proximate meaning enters the sphere of ultimate meaning, then ultimate meaning does judge the alignment of proximate meaning with ultimate meaning, so that there should be an integration of knowledge. How human beings use knowledge of the human genome enters into ultimate meaning’s sphere. How a person understands the nature of God, the nature of people in relationship with God, the final destiny of human beings, and so on, will certainly have consequences for his or

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her moral judgment on the uses to which knowledge of the human genome can be put. The actual tenets of Christian faith, and how these tenants impact on proximate meanings, are, as I have intimated, the subject of Dool’s paper. Included in that paper are indications of how these tenets may be communicated to a pluralistic audience.

NOTES 1 John C. Gallagher, ‘A Philosophy of Religion’ (1975), unpublished paper. Fr Gallagher teaches theology at Newman Theology School in Edmonton, Alberta. 2 See the paper which follows, ‘Discerning Catholic Positions on Particular Ethical Issues,’ by John Dool.

7 Discerning Catholic Positions on Particular Ethical Issues john dool

The previous essays have outlined how a variety of stances on a given ethical issue can emerge from differing stances on the character of moral value, and how a religious horizon within consciousness might contribute to ethical reflection. Yet a religious horizon within consciousness may find itself embodied in and specified by a particular religious tradition. Religious meaning and value can be expressed personally, symbolically, and linguistically as, for example, in a narrative; and each of these outward expressions is historically conditioned.1 In the case of Christianity (especially Catholic Christianity), these manifold expressions of meaning and value can be integrated under the single rubric of the logos or ‘word’: ‘the word of tradition that has accumulated religious wisdom, the word of fellowship that unites those that share the gift of God’s love, the word of the gospel that announces that God has loved us first and, in the fulness of time, has revealed that love in Christ crucified, dead, and risen.’2 So the meanings and values that constitute a person as Catholic can be embodied and specified in the word. These values include the moral values espoused by the Catholic tradition. Indeed, central to that tradition is a focus on the church’s teaching on faith and morals. How does one discern and identify the Catholic position on a given ethical issue? To what source or sources would one appeal, or what procedure or procedures would one apply to determine this? If the Catholic Church or individual Catholics are to have a voice in the ethical debates of our time, these questions must be addressed. In trying to discern the Catholic position on moral issues, we commonly turn to three sources:

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• the magisterium or official teaching body of the church, • the reflection and insights of theologians, and • the conscience of the individual. The various approaches for discerning the Catholic position differ in how they understand the relations between these elements and the relative weight they assign to each. I will first sketch out three common but less than adequate approaches, each of which places primary importance on one of these elements. Then, building on the foundation of the previous papers, and borrowing some further insights from Bernard Lonergan, I will suggest an alternative that uses the strengths and avoids the limitations of the other three approaches to offer a more balanced and integrated approach for discerning the Catholic position. This will also serve to show that the Catholic position is not simply imposed arbitrarily and intrusively into an ethical debate, but can be integrated as part of the search for moral truth. Authoritative Approach One common approach seeks to discern the Catholic position on ethical issues by locating it within identifiable, authoritative sources. An appeal may be made to the actual sources of revelation, that is, to scripture or to the tradition in its various forms. However, since many contemporary moral questions are not explicitly or adequately addressed in scripture or in earlier historical periods, this approach tends to turn to explicit magisterial teachings of the modern period. It is the magisterium’s task to protect and interpret the deposit of faith and the truths intrinsically connected to it, and these include moral truths. According to this approach, the Catholic position is found, first and foremost, by examining appropriate authoritative documents. However, this approach does not ignore the role of theologians. Theologians are seen as charged primarily with defending and explaining magisterial teaching. Their function is thus primarily apologetic rather than exploratory or creative, and so it is seen as conditioned by and subservient to the role of the magisterium. In its more extreme forms, this approach conceives the primary theological task as showing that magisterial pronouncements have demonstrable foundations in scripture and tradition.3 The role of conscience, according to this view, is to identify the

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church’s teaching and to conform itself to that teaching. Conscience is thus conceived in a largely passive or receptive way. It is not a locus or source for theological reflection on moral issues but a channel for the personal appropriation of the church’s doctrine. A conscience that fails to appropriate that doctrine is faulty or inadequately informed. Theologians may play a positive role in this formative process through their expression and justification of the magisterial position on a given issue. The first approach, while recognizing the roles of theologians and of conscience, understands these roles almost entirely as subservient to the role of the magisterium in its explicit pronouncements. This kind of ‘Catholic positivism’4 was not uncommon in the nineteenth century and in the first half of the twentieth. While few theologians or church documents today would express a strong version of this position, it survives quite prominently in some segments of popular Catholic consciousness. Thus, the recently published Catechism of the Catholic Church is regarded by some as not so much a guide to catechists, as it is intended to be, but as a compendium of ready and indisputable answers for Catholics, complete with index. This first approach is not without its strengths. It recognizes that authority plays an integral role in Catholic moral discernment. Through its emphasis on the communion in faith of the whole church, as represented by the college of bishops in union with the Bishop of Rome, this approach makes clear the communal and traditional perspectives that are essential to Catholicism. It is not, however, without its difficulties. In many instances, especially in the field of bioethics, developments and issues arise far too quickly for them to be matched by relevant magisterial pronouncements. One may look in vain for an explicit teaching on the most recent and pressing questions. And even if pronouncements from the past express principles that may be applied to these developments and new issues, this process of application will not be automatic and mechanical; simply looking to the documents themselves is sometimes insufficient. Here the work of theologians is crucial, not simply in reiterating and defending the teaching of the church, but also in providing critical interpretation and creative reflection. It is ironic that as historical and critical interpretations of scriptural texts have become thoroughly integrated into mainstream Catholic theology, the necessity of such interpretive approaches to magisterial texts has at times gone unrecognized. The approach of Catholic positivism also ignores the crucial contributions theologians often make in laying the foundations for magisterial

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teachings. There are countless examples in Catholic history of theologians’ innovations being incorporated into later magisterial teaching.5 The magisterium, and indeed the whole church community, is often best served by giving theologians the time and opportunity to work through complex issues. This is especially the case in an area such as bioethics, where technical and scientific knowledge can play a critical role in discerning how best to respond to certain issues. Moreover, in at least some versions of this approach, there is a danger that the legitimate freedom of conscience could be undermined. While conscience is always oriented toward objective truth, it cannot be merely passive, automatic, or mechanical without losing the character of free exercise – without which it is not really conscience. Catholic positivism often involves a kind of naïve assumption that the discernment of the Catholic position on an ethical issue is a matter simply of looking in the right place for the right text. It fails to account for situations in which there may be a legitimate pluralism of Catholic opinions. And even when a doctrine or position has been defined, this approach fails to grasp adequately the complexity of interpreting and appropriating magisterial teaching. Theological Consensus In a second kind of approach, the Catholic position on an ethical issue is discerned primarily through a developing consensus of theological understanding within the community. According to this view, the Catholic position is much more fluid and developmental than the first approach allows. Emphasis is placed on historical change and the need to adapt constantly, particularly in the area of moral theology. Theologians are perceived as having the leading role in this process of coming to consensus; this is because they are regarded as possessing the expertise to explore complex issues, identify and interpret the wisdom of the Catholic tradition, and apply their own critical reflection and traditional wisdom to contemporary ethical questions. The magisterium is conceived here as one voice within the communal discernment process – a voice that may be accorded greater or lesser weight within the discussion (often greater on doctrinal issues and lesser on ethical issues). Some versions of this approach recognize that a consensus among theologians on some issue or other may move beyond or away from the position of the magisterium. Conscience is accorded a greater role in this approach than in the

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first approach, but the need for conscience to be educated and formed in dialogue is stressed. The responsibility for that education and formation belongs to the broader church community, not exclusively or primarily to the magisterium. Versions of this approach existed in the medieval period during the flourishing of the faculties of theology at the great universities.6 And today, some academic theologians may espouse this approach, particularly those who place themselves (or find themselves) in a relationship of tension with the church’s magisterium. One of the strengths of this approach is the way in which it recognizes the importance of collaboration in discerning the Catholic position. Insights and ideas from many groups and individuals, including those traditionally excluded from roles of authority within the church, are to be brought into the conversation. Furthermore, it recognizes that coming to the truth on any issue, especially complex ethical issues, is not a mechanical process and may take time. On the whole, this approach avoids the problematic authoritarianism in the more extreme versions of Catholic positivism. Yet this approach can be excessively optimistic about the process of coming to consensus. Consensus among theologians can be an elusive goal, as anyone who has spent time with groups of theologians can attest. The pressing ethical questions of the day and the desire of the Catholic faithful for guidance on these questions may not be able to wait for lengthy deliberations. And consensus on some issue does not necessarily imply a grasp of the truth; consensus can be the achievement of nothing more than collective misunderstanding. Truth can also be obscured, rejected, or overlooked through the bias of a group, just as it can be through the bias of an individual.7 Indeed, such group bias can be especially difficult to recognize and overcome, since the members of the group tend continually to reinforce the shared bias among one another. So while the first approach sees the truth as being the defined or stated position of the Catholic Church, the second approach sees the socalled truth of consensus as the Catholic position. This view reflects a certain rationalism that may obscure intrinsic elements of Catholicism, such as the role of authority and the binding character of tradition. Consensus of the Faithful The third approach places its primary emphasis on the exercise of con-

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science: since ethics is ultimately about making decisions, and since only individuals in concrete circumstances make decisions, conscience must be the ultimate arbiter. The ‘Catholic position’ on an ethical issue is discerned, first and foremost, by the Catholic who is faced with making a decision. This approach can be expressed in highly individualistic terms, or it can be conceived as a consensus among the ordinary faithful. So the choice of the majority of Catholics to ignore magisterial teaching on birth control may be perceived as a kind of communal exercise of conscience that establishes a de facto Catholic position. This approach recognizes a role for both magisterium and theologians, but it limits each role significantly. They are resources to be consulted, of interest and, perhaps, of some authority; but neither of them constitute the ‘bottom line’ that conscience alone is equipped to provide. The individual remains free to assent to, or dissent from, the magisterial teaching or theological consensus. Conscience is given ultimate freedom here: after listening to the teaching of the church and the consensus of theologians, the individual will make his or her decision on what constitutes the ethical truth of the matter.8 This approach does recognize a significant truth: in the end, one must make one’s own moral decisions and act, rightly or wrongly, according to them. However influential they may be, neither church authority nor theologian can take the place of the person who must live and make choices in the world. Thus, the indispensable elements of free will and conscience in moral decision-making are respected by this approach. Its shortcomings are readily apparent, however. An excessive individualism, a common malaise of our culture, can comfortably find its home here, and conscience can easily become detached from the communal context intrinsic to Catholicism. Conscience alone cannot discern the Catholic position on ethical issues. It needs to be united to the magisterium – and it needs to be connected to the work of theologians in a way that is more intimate than what is had through mere consultation. A Balanced Approach Each of the approaches outlined above sheds light on of how the Catholic position might be discerned. Yet the underlying difficulty is not merely that each is only partially correct, or that each lacks the proper balance in assessing the relative importance of magisterium, theological exploration, and conscience. Far more significantly, none of these

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approaches can provide a basis for effectively relating and integrating the three elements. Building on the previous papers, I would like to borrow some insights from Lonergan to suggest one way in which the three elements can be both brought into balance and intrinsically linked. For Lonergan, doctrines, including moral doctrines, flow from the discrimination between truth and error that can be achieved through appeal to the foundational realities of intellectual, moral, and religious conversion.9 Those realities thus provide an integrating ground in which the three elements of magisterium, theological reflection, and conscience, when exercised authentically, are rooted. When ethical issues arise, sometimes the Catholic response will already be present in the explicit teaching of the church; sometimes it will be present implicitly within the wisdom of the tradition, waiting to be evoked and expressed; sometimes it will need to be constructed from a very rudimentary foundation. Whatever the situation, the Catholic position on ethical issues will be properly discovered or discerned by church authority, theologians, and individual conscience inasmuch as they undertake that task of discovery and discernment based on intellectual, moral, and religious conversion. The task of the magisterium is to express in formulated truths the mysteries revealed by God, and the truths intrinsically related to those mysteries. These formulations are normative for further reflection and questions. But these mysteries of the Catholic faith are ultimately one; in the end they are all dimensions of the one mystery of God’s own self. This infinite mystery is the gift received in faith and baptism when ‘God’s love has flooded our hearts through the Holy Spirit, who has been given to us’ (Romans 5:5). When the magisterium faithfully expresses that mystery, it is operating out of religious conversion, which is to know, to speak, and to live out of that love. This is the ground of the magisterium’s authority. The discernment of that truth, by both the magisterium and those who receive and interpret its teaching, will also necessarily involve intellectual conversion and, in the case of ethical issues, moral conversion. The task of theologians from this perspective is two-fold. First, they will seek to understand the human situations and culture that condition moral issues. This understanding will involve intellectual conversion, transcending one’s own biases and those of one’s group and culture. It will also involve moral conversion, in seeking the good not as one might wish it to be or how it is fashionably perceived, but as it is in itself. Second, theologians will seek to understand the truths passed down in

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scripture, tradition, and magisterial teaching. This will involve intellectual, moral, and especially religious conversion, an openness to a truth that challenges and transforms. The conclusions of theologians can have a normative character inasmuch as they are genuinely grounded in conversion; yet for Lonergan, this normativity is distinct from and dependent upon the normativity of scripture, tradition, and magisterium.10 It is the normativity that belongs to all truth, rather than that which emerges from a special charism of the Spirit. Conscience, too, will operate authentically inasmuch as it operates out of conversion. Intellectual conversion will lead the person to ask all the pertinent questions and seek all the knowledge and guidance needed to make an informed decision. Moral conversion will lead the person beyond self-justifying rationalization to a personal appropriation of the good. Religious conversion will lead the person to deliberate and to act out of response to the transforming love of God. Conscience at its informed and authentic best brings the individual to decision in light of these distinct but linked realities. So, too, the magisterium, theologians, and conscience will be distinct but in harmony to the degree that they operate from the foundational realities. That harmony will not be imposed extrinsically, but rather will be the integral, underlying basis for each to function according to its distinct nature and role. This approach recognizes the legitimacy of authoritative teaching that calls all to conversion, allows for a legitimate but limited autonomy of theologians, and allows for a real and free formation of conscience. They are, then, not competing forces seeking dominance over one another, but different modes of operating in response to the unrestricted love of God and seeking the true and the good in the light of that love. An approach grounded in conversion rejects and corrects the positivism of the first approach. It allows for situations in which the magisterium has yet to address an issue. Where the magisterium has made a pronouncement, a Lonerganian approach understands the fruits of that teaching as emerging within a dynamic process of discovery empowered by conversion, rather than by simply looking at the appropriate text and applying the teaching mechanically. It rejects and corrects the rationalism of the second approach by grounding the Catholic position in the gift of God’s love that transcends reason. It rejects and corrects the individualism of the third approach by insisting on the communal discernment of truth in light of that shared love. The Catholic position on particular ethical issues will emerge most

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clearly and effectively to the extent that the magisterium, the theologians, and personal conscience each pursue their task authentically. That position, to borrow another idea from Lonergan, is an achievement of common meaning. Such meaning does not just belong to the community, but helps to constitute it as the kind of community it is. Common meaning is constitutive of the Catholic community as a whole and constitutes each individual member as part of the community.11 As each plays his or her role in the discernment of moral truth from the foundation of conversion, the Catholic Church not only identifies and expresses an ethical position but also acts as church, as the one Body made up of many members. The discernment of a moral stance is thus a Catholic, ecclesial act in the most profound sense. The question remains whether that profoundly Catholic act is relevant to the wider community in which ethical debates arise. But it is crucial to see that the Catholic response or position neither drops out of the sky nor imposes itself imperialistically. Because it is grounded in conversion, it will be a prophetic challenge both to those within the Catholic community and to society generally. At the same time, because religious conversion is a profoundly human experience linked to the human experiences of intellectual and moral conversion, the Catholic response grounded in conversion may be a gift that can be offered to that wider community. Like any gift, it may be accepted or rejected, but even the latter possibility does not negate the value of the gift or of the giving.

NOTES 1 Bernard Lonergan, Method in Theology (New York: Herder and Herder, 1972) 112–15. 2 Ibid., 113. 3 Avery Dulles, ‘The Magisterium in History: A Theological Reflection,’ Chicago Studies 17/2 (1978) 277. Dulles cites Pius IX as espousing this view, which was repeated approvingly by Pius XII in the encyclical Humani generis. 4 The term is adapted from Lonergan: ‘What Karl Rahner refers to as Denzingertheologie, the late Pierre Charles of Louvain named Christian positivism. It conceived the function of the theologian to be that of a propagandist for church doctrines. He did his duty when he repeated, explained, defended just what had been said in church documents. He had no contribution of his

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5

6 7

8

9 10 11

own to make and so there could be no question of his possessing any autonomy in making it.’ Method in Theology, 330–1. Examples range from the early church (Tertullian coining the term ‘person’ to talk about the Father, Son, and Holy Spirit) to the twentieth century (John Courtney Murray’s ideas about freedom of conscience in religious belief or liberation theologians developing the idea of the preferential option for the poor). In these examples, and in others like them, the innovative ideas of theologians have been appropriated into later magisterial teachings so that they eventually become commonplace features of Catholic teaching. Dulles, ‘The Magisterium in History,’ 271–3. On the nature of group bias see Bernard Lonergan, Insight: A Study of Human Understanding, vol. 3 of Collected Works of Bernard Lonergan, ed. Frederick E. Crowe and Robert M. Doran (Toronto: University of Toronto Press, 1992) 247–50. It should be noted that Catholics from any point on the theological spectrum can exhibit this tendency. While so-called progressive Catholics may distance themselves from the magisterium and the accumulated wisdom of the tradition on questions of sexual morality, so-called traditional Catholics may tend to do the same in the realms of social and economic morality. Lonergan, Method in Theology, 299. Ibid. Ibid., 356–7.

RESPONSE: Albert Moraczewski In his discussion of the logos or ‘word,’ John Dool, strangely, does not include what for Catholic Christians is the primary meaning of the ‘Word,’ namely, Jesus Christ himself. The other meanings are derivative. It is because ‘The Word became flesh’ (John 1:14) that the other uses have significance. The author rightly lists three elements ordinarily used to determine ‘the Catholic position’: the magisterium, the reflections and insights of theologians, and the individual’s conscience. However, they are not all on the same footing. Dool seeks to present each position fairly and proceeds to critique each by presenting arguments for and against. Having completed that task and having found the positions wanting, he offers a synthesis based on Bernard Lonergan’s insights, a synthesis which is intended not only to balance, but also to link the three elements intrinsically. Is the proposed synthesis the answer? I think not.

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Intellectual, Moral, and Religious Conversion Dool states: ‘Whatever the situation, the Catholic position on ethical issues will be properly discovered or discerned by church authority, theologians, and individual conscience inasmuch as they undertake that task of discovery and discernment based on intellectual, moral and religious conversion.’ The ‘three-fold conversion’ is Lonergan’s ‘intellectual, moral, and religious conversion.’ Unfortunately, the author does not clarify adequately for me – perhaps because I am not a ‘Lonerganian’ – what is meant by these various conversions, even though he briefly explains how each plays a role in the discernment process. He states that religious conversion ‘is to know, to speak, and to live out that love [i.e., God’s love].’ Intellectual conversion is ‘transcending one’s own biases and those of one’s group and culture.’ Moral conversion is found ‘in seeking the good not as one might wish it to be or how it is fashionably perceived, but as it is in itself.’ What Is Catholic Teaching? According to the author, then, each of the three elements used to determine the ‘Catholic position’ – the magisterium, the theologians, and conscience – must undergo the triple conversion in order for us to discern what is Catholic teaching. But suppose the three don’t agree, which has clearly occurred in our day? A specific example of this, to which the author also refers, is the Catholic position on contraceptive sterilization. The magisterium clearly teaches that it is morally wrong and that this is a norm with no exceptions. Numerous theologians assert that the magisterium is in error, while polls supposedly indicate that a majority of Catholics ignore magisterial teaching on contraception. So what is the Catholic position on this issue? The author says: ‘So the choice of the majority of Catholics to ignore magisterial teaching on birth control may be perceived as a kind of communal exercise of conscience that establishes a de facto Catholic position.’1 However, we must ask just what the faithful are saying by their ‘communal’ action. Are they saying their action is a moral truth based on the Gospel? Or are they asserting that magisterial teaching does not apply, here and now, to their situation? (‘Our God is merciful and he would not expect me to jeopardize my health or my family’s well-being by having another child at this time.’) Again, what is the Catholic position on contraception? One could say that it is in a process of development. Must one wait until

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there is a consensus of the three elements? Of course, one could simply assert that one or more of the three have failed to undergo the threefold conversion in their respective discernment processes. And who is going to repent and be converted, or, alternatively, point the finger? Neither option seems likely. And who is going to decide that a consensus has or has not been reached? Certainly, the average Catholic, not to mention the non-Catholic, would have trouble discerning the Catholic teaching on a specific moral issue when the individual is seeking to do the morally right thing. If his or her conscience says that it is okay, is that then the Catholic teaching? Obviously, that is not the case: multiple teachings on a specific issue would have to be paraded to the world as the Catholic teaching on this or that issue. Responsibilities of the Magisterium, Theologians, and Conscience It seems to me that while the magisterium, theologians, and conscience are all clearly involved in Catholic teaching, they are involved in different ways. The magisterium has the responsibility of teaching faithfully the deposit of what God has chosen to reveal to the world through Jesus Christ, and before him, through the prophets of Yahweh. This deposit includes, among other things, the authentic interpretation of the sacred scripture and its applications to specific doctrinal and moral issues. The theologians, who early in the Church’s life were also the bishops, have the task of explaining, analysing, and preaching that teaching, and of assisting its further development. This task is, perhaps, more evident in contemporary times, when the magisterium engages in a wide range of consultations before issuing a definitive judgment on a particular issue. I might suggest, as examples, Donum vitae and the Declaration on Euthanasia, and, of course, the documents of the Second Vatican Council. The conscience of the individual faithful also plays a role, but perhaps not a major one. Individual Catholics who try to determine the will of God so that it can guide their moral life will generally turn to the Church’s teaching as it is found in various Church documents, or to the teaching and preaching of their local bishop or pastor. The Catechism of the Catholic Church (CCC) is not intended merely as a ‘guide for catechists.’ Rather, as Pope John Paul II wrote, it is ‘a sure norm for teaching the faith’ that enables the Church’s pastors to fulfil ‘their mission of proclaiming the faith and calling people to the Gospel life.’2 Note the pope’s words that the CCC is ‘a sure norm’; so it is not just a guide that

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can be ignored. ‘Calling people to the Gospel life’ means that the CCC contains moral values and principles to be lived. The knowledgeable Catholic’s acceptance of such teachings means they become rooted in the faithful. They are transmitted to the next generation through and in the domestic Church. Conclusion So what is the answer to the question, What is Catholic teaching? I believe it is what the magisterium teaches to be such. Certainly the magisterium will seek and listen to what theologians say, and will note the practice of the faithful. Still, the Church’s magisterium has the ultimate responsibility before God, as a charism from the Lord Jesus, to teach what God has revealed to us and the consequences of that revelation for the lives of the faithful.

NOTES 1 Editor’s note: The sentence from Dool quoted here occurs in the course of his discussion of one of the approaches he identifies as ‘less than adequate’ or as lacking balance, namely, the ‘third approach’ that ‘places its primary emphasis on the exercise of conscience.’ 2 John Paul II, Apostolic Constitution, Fidei depositum (issued on the publication of the Catechism of the Catholic Church), no. 3.

PART THREE Toward Determining the Normative Stances

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8 Who Owns the Human Genome? daniel p. sulmasy

Why Patent Human Genes? Those who favour the patenting of human genes argue that the genetic code holds great promise as a source of social benefit. Achieving this benefit depends upon sequencing genes and translating the science into clinical results. They argue that government cannot afford the whole cost of rapidly sequencing the genome and bringing its potential to market, and that the only way to attract enough private capital for such risky projects would be to provide patent protection. Concerns Two kinds of moral questions have been raised about patenting human genes. First, there are concerns that the patenting of genes will actually restrict clinical benefit, or even cause harm. For example, critics have argued that patenting will lead to increased trade secrecy, the withholding of important information from the rest of the scientific community, and thereby inhibit the progress of science. Concerns have also been raised that the commercial desire for profit may keep benefits from reaching certain populations. For example, the Province of Ontario is in the midst of a legal dispute with a corporation in the United States that holds a patent for the BRCA 1&2 genes associated with hereditary breast and ovarian cancer.1 The licensing charges for the tests to detect these genes are prohibitively high, thereby denying Canadian women access to this test. The second concern is that there is something intrinsically wrong with patenting human genes. Many people feel that owning genes is

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akin to slavery – the ownership of human beings. Or, they believe that genes are part of the common human patrimony and cannot properly be owned by anyone. This chapter addresses only these intrinsic issues, rather than the important concerns about consequences. More Fundamental Questions I will explore three very basic questions that must be addressed before anyone can answer whether the patenting of human genes is morally acceptable: What is property? What is a gene? What is the value of a gene? I will address each question in turn. What Is Property? There are many theories of property. I will review rather superficially some famous ones because these are the theories underlying current patent law. The most famous theory of property is Locke’s.2 His theory, simply put, is that one can be sure that one owns one’s self and one owns one’s labour. One also must, as an organism, appropriate things to oneself in order to live. Whatever one appropriates to oneself and mixes with one’s labour becomes one’s property. One can acquire property within the bounds of natural law, which means, for Locke, that there must be enough left over for others to appropriate and to sustain themselves. Locke’s theory does not fit intellectual property well. Perhaps the most famous development of the notion of intellectual property is Hegel’s.3 Hegel begins by assuming that one owns one’s thoughts. He argues further that one also owns the expressions of one’s thoughts. Each time one expresses an original thought to another person, one gives that person one copy of one’s thought – one book, one performance of a musical composition, and so on. That person, in turn, does not have the right to reproduce, sell, or distribute copies without the permission of the originator. Intellectual property law has refined these basic ideas.4 There are four overlapping, not mutually exclusive, legal theories of property. The occupation theory of intellectual property borrows from Locke, treating ideas as if they were land that one owns and to which others may be granted the right to visit. The invention theory borrows from Hegel, treating an invention or a composition as an extension of one’s person, which one owns. Utilitarian theories ask whether a particular patent or

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copyright decision will produce the greatest net social benefit, providing sufficient but not excessive incentives to creators, balancing all concerns, and producing the best scholarship, literature, science, and overall net benefit. Finally, there are contract theories stating simply that society justly owes compensation to discoverers whose discoveries have brought benefit to society, as part of a social contract. One might argue that ownership is not the same as patenting, but patenting is at least a form of temporary ownership, even if the development rights of the patent owner are more limited than the ownership rights of a landlord. One might also argue that these theories of ownership and patenting are philosophically inadequate, but these are the theories presently underlying Western law. What Is a Gene? If these are the extant theories of property, one should next ask what a gene is, before deciding whether anyone can own one. I believe that Bernard Lonergan’s distinction between bodies, things, and their conjugates can illuminate this question in important ways. According to Lonergan, a thing is a focus of data. It is a distinguishable unity in the manifold of data. A thing is a distinction and a unity. It is, in his words, ‘an intelligible, concrete unity differentiated by experiential and explanatory conjugates.’5 The experiential conjugates are the correlations between properties as experienced and properties as verified, e.g., between the experience of feeling heat and the heat that is the content of that experience. Explanatory conjugates are the scientific properties of a thing – correlations between that thing and other things. Stars are things. Pea plants are things. E. coli bacteria are things. Human beings are things. Lonergan distinguishes a thing from a body. A body is an ‘already out there now real.’6 Bodies are what we experience – what gives distinction and resistance. The experience of a body is that the object-for-me is the object-against-me. Bodies and things often overlap, but they are not synonymous. The mistake of logical positivism was to assert that they were identical. Pea plants have bodies, but the thing we call a pea plant is not reducible to the body of a pea plant. A human being has a body, but the thing we call a human being is more than a body. There are also things that have no bodies, such as Mu mesons and light. Light is a thing, but photons are only marginally considered bodies, especially if waveparticle duality is true. Thus, Drosophila chromosomes are bodies, but Drosophila genes are not reducible to Drosophila chromosomes.

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If a gene is not a body, it might seem that it must be a thing. And at one level, the level of cellular biology, this might seem to be the case. But genes do not exist free-floating in nature, apart from living things. Lonergan argues that there are really no ‘things within things.’7 At successively higher orders of complexity, lower order conjugates are subsumed within the higher. So, while at the level of molecular biology, abstracting from organisms, genes might seem to be things, genes are really an abstraction from living things. When a sequence of DNA is removed from an organism, it ceases to be a real gene. A gene has no independent existence. DNA cannot engage in self-replication. It cannot engage in histoneDNA or gene-gene interactions. It is not regulated in response to hormonal signalling or environmental changes. DNA is a thing, but DNA is not a gene. A gene is, in fact, not a thing, but an explanatory conjugate of a biological thing – i.e., a kind of scientific data about an organism. Genes are information, not bodies, and not things. A human being is not reducible to that human being’s genes. Genes are explanatory data. Natural selection works at the level of the phenotype, not the genotype. The data of Mendel and the data of Watson and Crick are complementary – a confluence of explanations. They are the explanations at the biological and biochemical levels, respectively, regarding the same aspect of living things. They support one and the same explanation about how organisms develop, reproduce, and evolve, namely, the gene. According to Lonergan, all things are particular.8 Thus, each individual human being is an individual thing. But this does not mean that there are not kinds of things. Human beings are things of a particular natural kind. Individual human beings are things. But they are a particular kind of thing – individual members of the human natural kind. Human genes, then, are neither bodies nor things. They are explanatory conjugates of things that are members of the human natural kind. Things literally are nothing unless they are a kind of thing. Being a kind of thing is what enables the individual member of a natural kind to be differentiated from everything else as anything at all. Genes are the biological explanation of how individual organisms have come to be the kinds of organisms that they are. What Is the Value of a Gene? Knowing what a gene is and what property means is important to the question of gene patenting. But if this question is to be pursued as a moral question, one must also know something about the value of a gene. Genes encode data that help to explain how a given natural kind of

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thing is ‘an intelligible solution to the problem of living in a given environment.’9 Environmental ethicist Holmes Rolston notes that genes are an explanation of an organism’s way of coping with a given environment; of solving the problems of adaptation to an ecosystem.10 Genes record the natural history of an organism’s struggle to solve an evolving set of problems, and are a means of transmitting information about that solution to the next generation. Genes are part of the intelligibility immanent in the data on organisms as individual things. Rolston argues that genes are therefore loci of value. This value is far more than instrumental – of value only to subjective valuers. Genetic value is also intrinsic. While various states of affairs can matter only to organisms that are capable of subjective evaluation, states of affairs matter for all organisms.11 Organisms defend their homeostasis and must appropriate matter from their environments in order to do so. Internal and external states of affairs matter for organisms, even if they cannot reflectively judge that these states of affairs matter to them. Genetic Value: Propositional, Normative, and Conservational In light of this, Rolston contends that genes have three kinds of value – propositional, normative, and conservational.12 By propositional value, he means that genes are almost literally a propositum, an assertion. Organisms make a statement by thrusting themselves into the world. The genes of that organism are the language by which that message is asserted. This assertion is an assertion of value. By normative value, Rolston means that genes set up a program of normal development, and thus create a norm and a gap between what is and what ought to be. The flourishing of an individual organism as a member of a natural kind is the most fundamental instance of the word ‘good.’ ‘Good’ means a well-developed (or normally developing) instance of its kind.13 A good tree is one that flourishes as what it is. The norm for what an organism ought to be is a value expressed in its genes. By conservational value, Rolston means that genes encode a valuable achievement. The natural history of a natural kind, a solution to a series of environmental problems as expressed in a genome, is a value worth conserving. It is a value for the individual organism and it is a value for the next generation to which these data will be transmitted. Further, Rolston argues, genes are really the locus in which the dynamic between the individual and the kind is played out biologically. The propositional, normative, and conservational value of genes has a dual aspect. Each individual organism has a good of its own and a good

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of its kind, and both are true at one and the same time.14 These goods are inseparable. Nothing can reproduce a genome unless it has survived somatically, and no organism can exist somatically unless it has been generated. The value of genes is a value both for the individual organism and for its natural kind. Genes thus express an important aspect of the value of organisms. This value is both individual and inclusive. Individual value is the value of the genetic information for the individual organism. Inclusive value is the value of the genetic information that the individual organism shares with others. The physical tokens (in the form of base pair sequences) of each individual’s genetic message express a type that is distributed broadly across kin, clan, species, and beyond. Together, the individual and inclusive value of the genetic message in part constitutes and in part expresses the intrinsic value of an organism. The intrinsic value of an organism is the value that it has in virtue of being the kind of thing it is. All living things have such intrinsic value. However, only human beings appear to have, as a natural kind, by virtue of their species-specific capacities for rationality, freedom, love, creativity, free will, and moral agency, the intrinsic value that we call intrinsic dignity. Intrinsic dignity is the value that human beings have by virtue of being the kind of thing they are. Genes are a valuable explanatory conjugate of living things. They explain in part the intrinsic value of living things. Human genes, then, are valuable in that they explain in part the intrinsic dignity of human beings. Questions for Casuistry One may now begin to approach specific casuistic questions about gene patenting. Is Owning a Human Genome Owning a Human Being? I have suggested that genetic reductionism is false. If human genes are explanatory conjugates of human beings, then human beings cannot be reduced to their genomes. Thus, one cannot analyse these questions under the paradigm of slavery. Is Owning a Human Gene Owning a Body Part? If owning a human genome is not like slavery, perhaps it would be better to analyse genes as body parts. Are genes, or even a whole genome, not

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simply parts of a body? After all, blood used to be considered an alienable body part. The reason that the practice of selling blood was stopped was not that there was a huge humanitarian outcry that the practice was intrinsically wrong. The argument that led to the ban on selling blood was that it led to worse health care outcomes. But there are at least two arguments against considering genes to be like blood. First, a gene is not a renewable resource like blood. Second, a gene is not a body. A gene is not reducible to a chromosome or a sequence of DNA. It is not even a thing. A gene is data – an explanatory conjugate. It is not a body part at all, so one cannot consider owning it to be the ownership of a body part. If this is so, then a simple Lockean approach to gene ownership will not work. A gene is not a body that one has appropriated like a plot of land, and mixed with one’s labour. Is Owning a Gene Owning Information? Yet, even if genes are information and not bodies, a simple Hegelian approach to intellectual property rights will not help. Genes are not creative ideas, like treatises on government or sonatas. Genes are discoveries of what already exists in nature, and naturally occurring substances are considered unpatentable. The Curies, for instance, did not patent radium, a substance that they discovered after considerable intellectual effort and use of resources, a discovery that was novel, not obvious, and useful. Still, patents have been issued for some natural substances, such as paclitaxel, a chemotherapeutic agent purified from the Pacific yew tree. However, paclitaxel, like other naturally occurring substances, has actually been considered to be unpatentable in itself. Thus, compound patent protections have not been extended for naturally occurring substances like paclitaxel, but only patents for method of use and process of manufacture. How then has patent law treated genes? The watershed legal precedent in the United States was the case of Diamond v. Chakrabarty in 1980, when a genetically modified bacterium was deemed a new composition of matter and therefore patentable.15 Genetically modified oysters and mice have since been patented. On these precedents, the U.S. Patent Office decided that if whole animals could be patented, parts of their DNA could be also. The Ontario BRCA 1&2 case seems to be the first major legal challenge to that ruling. But leaving aside questions about whether the precedent of patenting genetically engineered organisms is morally correct, the move from pat-

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enting organisms to patenting genes could not be justified if what I have said about the nature of genes is correct. Organisms are things, but genes are not. Genes are not things within things or bodies within bodies. Genes are not new compositions of matter. Genes are explanatory data about living things. Further, the sequence of base pairs that is being sought is discovered, not created. A gene is neither a composition of matter, nor an invention, nor a creative act. Pre-existing data that one discovers, such as the Dead Sea Scrolls, are not subject to patent or copyright. And unlike the Dead Sea Scrolls, there are as many copies of the human genome as there are human beings. The Unique Status of Human Genes and the Question of Ownership But even supposing that naturally occurring compounds such as paclitaxel could be patented, the kind of information contained in the human genome is different from information about the chemical structure of paclitaxel in morally significant ways. First, genetic information is the biological medium by which the individual and the species are related to each other. My genes are both mine and ours, always and at the same time. They are the biological message by which I become one of us. As Rolston has put it, ‘There is a shortrange viewpoint from which an organismic self has its own genes, owns its genes; there is a long-range viewpoint from which any such ‘own genes’ are ‘owned by’ or ‘belong to’ the genetic line that a particular self instantiates.’16 This is not true of Plymouth Rock or paclitaxel. Second, the intrinsic value that any organism has is the value it has in virtue of being what it is. The genome is the biological medium through which an organism is the kind of thing it is. The genome bespeaks the propositional, normative, and conservational value that is intrinsic to the organism as the kind of thing it is. This intrinsic value, in the case of the human natural kind, is the value we call intrinsic dignity. There is no other biological substance that anyone could claim to own that is the very biological means by which intrinsic human dignity is communicated and instantiated in the world. Third, the value that is instantiated through a genome is, as Rolston suggests, valued in unique ways. Genes have both individual value and inclusive value. Every individual genome is unique. That individual’s genome, in part, constitutes the uniqueness of the individual who, as a human being with intrinsic dignity, must be valued. It is from this fundamental principle that moral concerns about the privacy of human

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genetic information arise. The privacy of an individual’s genome is only a moral concern when that individual has intrinsic dignity. We have no moral concerns about the privacy of the genetic endowment of each individual mouse. At the same time, however, this intrinsic Dignity has an inclusive aspect that is also communicated through the human genome. The intrinsic dignity of a human being is the value that he or she has by virtue of being the kind of thing that he or she is. The medium through which our biology communicates this is our genetic code. It belongs to us as a species. It in part constitutes the value we must recognize in each other as a shared value – what makes us, biologically speaking, members of the same natural kind. This cannot be said of plutonium, or an asteroid, or snake venom phosphodiesterase, none of which are considered patentable. Thus, even if one were to accept the validity of patenting naturally occurring substances, it would make no sense, metaphysically or morally, to say that patenting genes could be governed by the principles that would putatively govern the patenting of these naturally occurring substances. John Stuart Mill once wrote that there are ‘things which are or have been subjects of property in which no proprietary rights ought to exist at all.’17 This can be said of the human genome. No matter how one looks at the question, it is hard to find a way to make metaphysical or moral sense of the idea of patenting human genes. There remains one other way to approach the question. It seems that this is the approach that patent offices have adopted. One can pretend that patenting genes makes sense in order to get the capital necessary to get the work done and to bring useful gene products to the public very quickly. But this ‘as if’ approach is morally perilous. As John Rist notes, constructing moral systems upon such self-deceit is a hallmark of our time, and such collective self-deceit deals an absolutely crippling blow to the very notion of ethics.18 Practical Concerns If genes are not to be patented, what are the alternatives? This is ultimately a matter for policy experts. But it seems that one could have waited another year or two for the public sector to have completed sequencing the human genome. The code could be considered public knowledge, available to the world. Our genes, after all, are part of our common molecular anatomy. Vesalius did not patent the liver because he was the first to find it.

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Nonetheless, as a matter of justice, patents could be granted for novel compositions of matter that included genes, novel methods of finding them and using them, and novel methods of manufacture concerned with genetic material. For example, corporations and private individuals should all retain the right to apply for patents for truly novel compositions, such as a gene attached to a particular vector for transfecting diseased cells. But if my analysis is correct, there should be no patents for native DNA sequences as new compounds or as new compositions of matter. This simply makes no sense from a metaphysical and a moral point of view. Many other questions about genes, ownership, and patenting deserve attention. I think my analysis of some of the fundamental questions of the nature of property, the nature of genes, and the value of genes might shed some light on these questions as well. If so, even if I am wrong in my specifics, at least I might lead others to think more clearly about these important social issues.

NOTES 1 Editor’s note: The author seems to be referring to the threat by Myriad Genetics of Utah to sue the Province of Ontario over its patents on the two breast cancer genes. As Barry Brown and Russell Sawa remark in Chapter 10, as of June 2006, the company has not carried through on its threat to launch a legal challenge against Ontario. 2 John Locke, Two Treatises of Government, ed. Peter Laslett (New York: Cambridge University Press, 1965) § 27, pp. 282–8. 3 G.W.F. Hegel, Hegel’s Philosophy of Right, trans. T.M. Knox (London and New York: Oxford University Press, 1967) §§ 67–70, pp. 54–7. 4 For a good collection of recent writings on the philosophical theory of intellectual property, see Intellectual Property: Moral, Legal, and International Dilemmas, ed. Adam D. Moore (Lanham, MD: Rowman & Littlefield, 1997). 5 Bernard J.F. Lonergan, Insight: A Study of Human Understanding, vol. 3 of Collected Works of Bernard Lonergan, ed. Frederick E. Crowe and Robert M. Doran (Toronto: University of Toronto Press, 1992) 280. 6 Ibid., 276. 7 Ibid., 283–4. 8 Ibid., 274. 9 Ibid., 290. 10 Holmes Rolston III, Genes, Genesis, and God: Values and Their Origins in Natural

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14 15 16 17

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and Human History (Cambridge and New York: Cambridge University Press, 1999) 34–7; 43–4. Ibid., 40. Ibid., 40–1. Philippa Foot makes a very similar argument in Natural Goodness (Oxford: Clarendon Press, 2001). She states boldly (p. 39) that ‘there is no change in meaning of “good” between the word as it appears in “good roots” and as it appears in “good dispositions of the human will.”’ Rolston, Genes, Genesis, and God, 41. Diamond v. Chakrabarty, 447 U.S. 303 (1980). Rolston, Genes, Genesis, and God, 62. John Stuart Mill, Principles of Political Economy, With Some of Their Applications to Social Philosophy, ed. W.J. Ashley (London: Longmans, Green, 1909) II.II, § 7, pp. 235–6. John M. Rist, Real Ethics: Reconsidering the Foundations of Morality (Cambridge and New York: Cambridge University Press, 2002); see especially pp. 20–6; 222–8.

9 Genetics, Medicine, and the Human Person: The Papal Theology joseph boyle

Papal teaching has been a central factor shaping Roman Catholic approaches to moral questions, especially during the last century. This teaching essentially involves instruction and explanation, a form of theology in which the popes seek to relate moral issues, and the Catholic prescriptions evoked by them, to central elements of the Christian world view. There is relatively little papal teaching on the moral issues specifically raised by genetics, but two papal statements addressing these issues underlie much of what the church has taught about genetics, whether by Vatican congregations or by bishops and bishops’ conferences. The first of these is an address Pope Pius XII gave to a conference on genetics on 7 September 1953.1 The second is Pope John Paul II’s address to a 1983 medical conference.2 In spite of the developments in genetics during the 30 years between these statements, in particular the discovery of DNA and the creation of possibilities for genetic manipulation, the underlying normative outlook of the statements is the same, and the themes addressed are remarkably similar. The reasoning of these statements repays careful analysis. Pope Pius’s Address on Genetics Pius’s address is divided into three sections: 1) a summary of his understanding of the results of genetic inquiry up until 1953, with special emphasis on implications for Catholic faith and practice; 2) a reflection on the commitment of science to truth and the implications of this commitment for a proper understanding of the human person; and 3) specifically moral teaching on the actions involved in genetic research and its clinical application, in his day quite limited. Although Pius’s moral

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teaching is most important for this summary of papal teaching, the other parts of the address deserve study and contain several points that are directly relevant to the moral teaching. A Basis for Theological and Moral Teaching First, Pius’s summary of the state of genetic knowledge contains an articulated recognition that, while the Pope is a religious and moral authority, he is no expert in genetics. This awareness goes beyond the evident awe and respect he expresses for the achievements of biological science. He indicates that his summary is open to revision by experts, and ends by indicating that his summary is not intended as a scientific opinion but as a common basis for the theological and moral teaching that follow.3 Christian Anthropology and Genetic Science Second, Pius’s reflection on the scientific commitment to truth contains a set of related theses that connect some of the fundamentals of Christian anthropology to genetic science. The unifying theme is that scholars in several sciences, including philosophy and theology, study the same realities, and their well-founded results will not be contradictory: ‘Rarely is it that merely one science deals with a particular subject. Often there are many sciences dealing with a subject, each one treating it under a different aspect. If their research is correct, no contradiction is possible between their findings, because this would presuppose a contradiction in the ontological reality, and reality cannot contradict itself.’4 Although he does not use the current language of interdisciplinary or multidisciplinary research, this is plainly what Pius has in mind. Sciences must respect the limits of their methods and acknowledge the genuine results of other sciences. Pius uses this multidisciplinary conception of knowledge as a basis for warning against reductionist conceptions of human life. But he also emphasizes that these limits are not arbitrary restrictions on scientific research: ‘Barriers there are, but their purpose is not to imprison the truth: their purpose is to prevent unproved hypotheses from being accepted as established facts, to keep persons from forgetting that it is necessary to complete one source of knowledge with another, and to avoid wrong interpretations of the scale of values and of the degree of certitude of a source of knowledge. It is to avoid these causes of error that barriers exist; but there are no barriers to truth.’5

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Pius develops the implications of this view of science and human knowledge for the understanding of human life. He notes that the genetics of the 1950s has succeeded in explaining many characteristics of human beings, but not yet the ‘whole life of man.’6 However, once the question of the spiritual principle of human life is raised, there is a need for an explanation not available in genetics: the unity of the human person and the reality of intellectual knowledge and of free will, cannot be explained by genetics: ‘Genetics, as such, has nothing to say to the fact that, in the unity of a human nature, a spiritual soul is joined to an organic substrate which enjoyed relative autonomy. It is here that psychology and metaphysics or ontology must enter in, not in opposition to genetics but in agreement, in order to further and substantially complete its findings.’7 Pius immediately draws attention to an opposite error: plainly the psychic dimension is not simply and completely explained by the spiritual soul without reference to a person’s genetic makeup. Practical Genetics This ontological unity of the human person has moral implications which form the background of Pius’s moral evaluation of genetic research and practice. But he does not bring these implications explicitly into the foreground of his moral analysis until the final, specifically moral, part of his address. Pius begins this section on practical genetics by developing an analogy to show the importance of genetic knowledge and its role in improving human life.8 He compares the relationship between soul and body with that between an artist and his or her instrument. The artist’s ability can compensate for shortcomings in the instrument, but the artist plays better if the instrument is perfect, and there is a threshold below which the instrument is impossible to use. Genetics helps us to understand the instrument better and to make it play better. Pius notes that it is possible to diagnose the dispositions a person inherits and to offer a prognosis. The diagnosis and the prognosis Pius has in mind seem to be the information available to genetic scientists and counsellors before the discovery of DNA. In principle he approves: ‘The fundamental tendency of genetics and eugenics is to influence the transmission of hereditary factors in order to promote what is good and eliminate what is injurious. This fundamental tendency is irreproachable from the moral viewpoint.’9

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Then the qualifications are mentioned: certain methods for achieving this end, certain defensive measures, and a misplaced esteem for the ends of practical genetics are morally questionable. Practically, these three headings point to the same issues: the use of contraception, sterilization, abortion, and the prevention of marriage to prevent the handing on of undesirable characteristics. Without dealing with all the argumentation relating to these specific issues, Pius reminds us of their established place in Catholic moral teaching and condemns all of them. In defending the right to marry, Pius indicates the very limited conditions under which a person can be justly prohibited from marrying, or if married already, from engaging in marital acts: incapacity to act as a human being, making one unfit to contract marriage, and lack of freedom to consent to marital acts. He continues in terms that have wide application: ‘Outside these cases, the banning of marriage or of marital intercourse for biological, genetical or eugenical [sic] motives, is an injustice, no matter who it is who issues that prohibition, whether a private individual or a public authority.’10 Pius immediately adds that this norm does not mean that couples should be denied information about their genetic conditions and the implications for offspring. This is permissible and ordinarily obligatory for those having such knowledge. Still, ‘to advise against, however, is not to forbid. There might be other motives, especially of a moral or a personal nature, which are of such importance as to authorize the contracting of marriage and its use, even in the circumstances just mentioned.’11 Pius’s Summary Pius ends his address with an exhortative summary in which he defends marriage and traditional morality and urges these teachings upon the scientists he addresses. Part of this finale echoes Pius’s earlier concern with the unity of the human person. In contrast to the study of plants and animals, which are entirely at the disposal of science, the genetic study of human beings deals with personal beings having inviolable rights and moral responsibilities.12 Pope John Paul II’s Address on Genetic Manipulation In his 1983 address concerning the ethics of genetic manipulation, Pope John Paul II emphatically repeats much of the ethical teaching found in Pius’s address and applies it to the situation made possible by

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the discovery of DNA and the creation of techniques for direct genetic intervention.13 Early in his address, after affirming the importance of inviolable human rights founded on the natural law, John Paul restates the final point in Pius’s address, but in the context of the new and challenging questions modern medicine poses for morality. To deal with this challenge, John Paul argues that the nature and role of medicine must be correctly understood: medicine must be conceptualized as serving the human person. That means that the interests of the sick person must be paramount and never subordinated to the social interests of the healthy and the well-off. This concept of medicine, recognized in traditional medical ethics, holds for all ages of human development, and provides the promise for good medicine in the future: ‘What is at stake is much more than the safeguard of a traditional medical ethics, deontology. Rather it is respect for a concept of medicine holding good for mankind in all ages and safeguarding mankind tomorrow by virtue of the recognized value of the human person, who is the subject of rights and duties and is never an object, to be used for other ends, even a selfstyled social good.’14 The Unity of the Human Person John Paul goes on to make a number of brief points. His first point is about the right to life from conception. His second point explicitly develops the idea, present but undeveloped in Pius’s address, of the unity of the human person. John Paul sets a context for this development. He expresses concern for the isolation of the technical problems posed by medical treatment from the attention that should be given to ‘the person of the patient in all his dimensions.’ He suggests that the danger of this isolation is made more likely by the specialization of modern medicine. He notes the inevitability of specialization, and has no objection to it as such, but indicates that it introduces complexity. He contrasts the work of the modern medical specialist to that of the more traditional general practitioner: ‘[The general practitioner’s] gaze began by taking in the organs and bodily functions as a single whole. And, on another level as well, he more easily won knowledge of the patient’s family, his surroundings, his history in general.’15 He concludes: ‘You must ... make continual efforts to consider the profound unity of the human being, in the evident interaction existing among all his bodily functions, but also the unity of his bodily, affective, intellectual and spiritual functions.’16

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John Paul adds a surprising corollary to this thought. The need to consider each medical condition in its full human context has a social analogue. For within society the complementarity of persons allows solutions that are impossible when only the individual is considered. The handicap of definitive sterility can thus be addressed by infertile couples adopting or devoting themselves to others’ children. Genetic Manipulation In his third point John Paul addresses explicitly the question of genetic manipulation. He begins with a consideration of strictly therapeutic genetic manipulation, and evaluates it as Pius had evaluated earlier efforts to apply genetic knowledge: ‘A strictly therapeutic intervention, having the objective of healing various maladies – such as those stemming from chromosomal deficiencies – will be considered in principle as desirable, provided that it tends to real promotion of the personal well-being of man, without harming his integrity or worsening his life conditions.’17 He goes on to raise a further question: ‘It is really of great interest to know whether an intervention upon the genetic store, exceeding the bounds of the therapeutic in the strict sense is morally acceptable as well.’ He does not define what such non-therapeutic interventions might be, but he also refers to them as interventions aimed at ‘improving the human biological condition.’ Presumably, what he has in mind includes interventions promising some improvement of the life of the person or persons affected by the intervention, but not by preventing a disease that would emerge from a genetic disorder without genetic intervention on the person himself or herself. What he has in mind surely also includes interventions that would contribute to the presence of some characteristics in a population or in humans generally – trying to breed ‘I know not what superman,’18 or perhaps people with certain characteristics useful for some special occupations. John Paul does not explicitly rule out some interventions of these kinds, at least some in which a health benefit could be secured by genetic surgery on the person benefiting, without changing the human genetic store. Changing the genetic store – that is, changing the reproductive genetic material that is handed on to new generations – seems to be the effect of germ-line therapy. Although his permission of therapeutic genetic manipulation does not explicitly reject germ-line interventions when they are therapeutic, the interventions in prospect when

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he spoke did not likely include germ-line interventions. Moreover, John Paul seems to reject germ-line interventions: he states a preference for what is called ‘genetic surgery,’ in which the surgeon does not modify nature but helps it develop along its line.19 Furthermore, he condemns interventions ‘tending to modify the genetic store and to create groups of different people.’20 Consequently, at the very least, John Paul expresses grave concerns about any project for improving the human genetic store, even if he does not mean to condemn in principle everything of that kind. Conditions for Moral Good The focus of John Paul’s discussion of non-therapeutic genetic interventions is not primarily on the specific interventions allowed and prohibited, but on the conditions that must be met if interventions of this general kind are to be morally good. He notes that the basis for the relevant moral conditions is the identity of the human person, one in body and soul. The biological nature of every person is untouchable because it is a component of the person, and so, when one touches the human body, one touches the human person. Human dignity is not something separate from the concrete biological individual.21 The first condition rooted in this unity is that interventions must respect the origins of life, not only in biology but in the spiritual union of marriage. This condition seems to refer to the requirement that new human life must emerge from marital intercourse, not from scientific manipulation of human reproductive materials. The second condition is that genetic interventions must respect the biological basis of human liberty. If we modify the genetic store to create groups of different people, we ignore that basis and risk marginalizing some groups. The idea here seems to be that breeding types of persons will compromise their liberty and dignity because they are bred for some limited social function. The third condition is that any genetic intervention must be based on a sound value system that recognizes the irreducibility of the person to the biological, and so rejects materialism and any form of racism. John Paul II’s Summary It is worth noting in passing John Paul’s summary comments, in which he calls for discernment between the good and bad senses of the idea of

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genetic manipulation. He lists the ‘beneficial applications in the fields of animal and vegetable biology,’ along with the correction of anomalies, as clearly among the good uses of genetic knowledge and technology. Conclusion Brief as it is, the papal teaching on genetics provides some general and some quite particular guidance for those developing, applying, and using new genetic knowledge. It is not surprising that the popes restate in this context the received teachings on marriage and on the sanctity of life. Nor should it be surprising that in principle they support the development and application of genetic knowledge to help people solve their medical problems and improve human life: Catholic belief is truly humanistic. What may surprise some is the extent to which the popes indicate modern, scientific medicine to be an apt instrument for the remedy of much human suffering, and for the pursuit of genuine human well-being. However, the role of medicine in God’s creative and redemptive economy will be carried out only if medicine is based on respect for the body-and-soul unity that is the human person.

NOTES 1 Pope Pius XII, ‘Moral Aspects of Genetics,’ in The Human Body, ed. Monks of Solesmes (Boston: St. Paul Editions, 1960) 246–60. 2 Pope John Paul II, ‘The Ethics of Genetic Manipulation,’ in Origins 13/23 (17 November 1983) 385, 387–9. 3 Pope Pius XII, ‘Moral Aspects of Genetics,’ 251–2. 4 Ibid., 253–4. 5 Ibid., 256. 6 Ibid., 254. 7 Ibid. 8 Kevin D. O’Rourke and Philip Boyle, eds., Medical Ethics: Sources of Catholic Teachings, 3rd ed. (Washington, DC: Georgetown University Press, 1999) 170–1. Much of this last section of the address is reprinted on these pages, and is likely more accessible in this newer collection. 9 Pope Pius XII, ‘Moral Aspects of Genetics,’ 257. 10 Ibid., 259. 11 Ibid. 12 Ibid., 260.

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13 Pope John Paul II, ‘The Ethics of Genetic Manipulation,’ 385, 387–9; O’Rourke and Boyle, 172–3. Central parts of John Paul II’s address are available on these pages. 14 Pope John Paul II, ‘The Ethics of Genetic Manipulation,’ 387. 15 Ibid., 387–8. 16 Ibid., 388. 17 Ibid. 18 Ibid. 19 Ibid., 389. 20 Paul Flaman, Genetic Engineering: Christian Values and Catholic Teaching (New York: Paulist Press, 2002) 59–66. This sentence is ambiguous. Is it a condemnation of the two interventions connected by the conjunctive ‘and,’ or a condemnation of one conjunctively described intervention? I suspect the sentence is most reasonably understood in the second way, thus allowing in principle that germ-line interventions of a therapeutic kind might be justified. In a useful introduction to this subject matter, Paul Flaman judges otherwise (pp. 59–66, especially at 66). He cites a 1999 rejection of germ-line therapy by the Pontifical Academy for Life. 21 Pope John Paul II, ‘The Ethics of Genetic Manipulation,’ 388.

10 Key Issues in Genetic Research, Testing, and Patenting barry f. brown and russell j. sawa

Other contributors to this volume have presented their views on a variety of key issues in genetic testing, research, and patenting. Here we present not a complete summary of the views of each contributor, but rather a selection of important points or overriding themes. An Overview Knowledge, including genetic knowledge, is a basic human good. Genetic knowledge can be directed toward the prevention, treatment, and cure of many illnesses, and in this lies its appeal. For example, population genetic studies carried out on the founder population in the province of Quebec seek to find the genetic basis of many different diseases. The expectation in these studies is that the knowledge gained may be applied to finding new ways to treat those diseases through new drugs and diagnostic techniques.1 Moreover, the new field of pharmacogenetics holds the promise of developing new drugs that are tailored to individuals with specific genetic variations. Large pharmaceutical companies are engaged in collecting DNA and genetic information for this purpose.2 These projects hold great promise of better diagnosis, treatment, and cure for many significant diseases that afflict us. Genetic somatic cell therapy also holds the promise of treating genetically based diseases that cannot be treated by conventional drug or surgical therapies. Predictive genetic testing for susceptibility to diseases such as colorectal tumours is another beneficial consequence of genetic research. The benefits of genetic research, some of which are noted above, are impressive. However, genetic knowledge can be obtained unethically. For example, it can be obtained by means of research on human beings

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that kills them at an early stage, such as in embryonic stem-cell research that destroys the embryo. This is most controversial when embryos are created for the purpose of experimentation. Genetic knowledge can also be obtained by fetal research that prolongs the life of an aborted fetus, only to terminate it later. It can be obtained by means that involve a high risk to adults and children, or by means to which subjects have not consented. It can also be obtained by deception or fraud. Knowledge obtained in population genetic studies may cause psychological or social harm to the subjects, to their relatives, or to members affiliated with their group. In addition, knowledge, as applied in technology, can be used for harmful purposes. Although knowledge is a good, knowledge obtained through testing one’s genetic predisposition to a degenerative disease before a treatment is available may be unwelcome news. Knowledge that one has a genetic defect or has passed that defect on to one’s offspring may be a challenge to one’s sense of worth, or be a source of guilt. This genetic research offers hope, but also severely challenges our understanding of the person, autonomy, the objectification of what is personal, the meaning and values of our interconnectedness through the gene pool, and the impact of technical innovation on the whole person: body, mind, and spirit. The genetic revolution promises the development of cures and methods to prevent disease and in the relief of pain and suffering. But the resulting technology can also have harmful effects on our human dignity, liberty, and ability to flourish. A hypothetical future scenario is depicted in the 1997 film, GATTACA, in which, in a future world, humans are assigned to a subhuman status because they are not genetically perfect. The consequences of such distinctions in recent history scream out as a violation of our shared humanity.3 With such atrocities in our recent memory, we should require no reminders of the need to develop ethical standards for manipulating our genetic blueprints. Genetic research may also lead to reduced possibilities for human flourishing if consumerism dominates and policies based on reductionism and determinism are allowed to proliferate at the expense of social justice and human solidarity. Hence, we must ask some searching questions: How do we act responsibly? What kind of society do we want to be? Clearly, we want to be a society that stresses solidarity, the sharing of resources, and living in harmony with the environment. The task for Catholic thought is not to reject genetic research outright, but to determine its limits and the manner in which it is to be carried out. Some contributors to this volume have proposed terminal

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values by which to determine such limits. Others have proposed that research and practices that fail to protect and foster human life and the human spirit should be deemed inherently wrong. Still others have offered human dignity as the norm to which we should refer. In terms of Catholic ethics, these concepts are quite relevant. For us, the human spirit in question is not an abstraction; it is the individual, embodied spirit, endowed with unique character and talents. This embodied spirit is the soul of each person. Hence we must look at whether the research or the technology in question damages not only the body but also the mind and spiritual soul of each person. By spiritual soul we mean the immaterial, incorruptible principle of life in every living person. In his Summa theologiae, in the ‘Treatise on Man,’4 St Thomas Aquinas presents philosophical arguments, based on the ability of the human mind to engage in abstract cognitive activity, that the human soul is an immaterial principle, with powers of intellect and will that transcend the limitations of matter and enable the mind to know and to freely choose courses of action for which the person is morally accountable. Dangers Inherent in a Narrow View of Genetics Contributors to this volume often refer to genetic reductionism, determinism, and perfectionism. A theme that resonates throughout is the nature of the human person. Moreover, the question of whether or not the Human Genome Project (HGP) will enhance the flourishing of human persons also pervades the collection. Catholic teaching recognizes that human persons are composites of soul and body, but rejects the radical Cartesian dualism that has afflicted so much of modern science and bioethics. Soul and body are understood as united in a close, intimate unity. Furthermore, the person is created in the image of the Creator and has a supernatural destiny. Accordingly, we must ask whether modern genetics – particularly when reductionism and genetic determinism come into play – will promote peace and justice, the conditions in which human beings can flourish. It appears that the potential to do so exists, but the realization of this potential will depend on setting limits and ethical standards that respect the nature of persons at all stages of development. An acknowledgment and respect for the spiritual nature and supernatural destiny of humanity, and so for the fundamental equality of all human beings, will ensure justice better than a view which sees the person simply as a material object. When justice is assured, there is a greater likelihood of peace.

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At this point, some elaboration of reductionism, determinism, and perfectionism is in order, as knowledge of them helps us to avoid some ethical pitfalls, particularly those inherent in genetic testing. Reductionism Reductionism is the theory that a complex entity can be reduced to, and thus fully explained by, its basic components. In the physical sciences, these are molecules, atoms, or subatomic particles. In the life sciences, these are chromosomes, genes, and the bases that make up the DNA of living beings. It is convenient to concentrate on genes when explaining living beings. Some think that genes should be characterized as the new gods since they appear to control the development of the individual. In popular language, we are nothing but our genes. We are the means by which genes transmit themselves to future generation. They are deemed to be the basic substances of which the biological world is made. From a perspective based on Catholic teaching, it is clear that although we might be described as ‘organized collections of genes,’ we are much more than that. We are creatures of God, made in God’s image and likeness. Our dignity, our worth, comes from that relation. Our status as creatures was not simply given to us once in the remote past, but is ongoing, with new emergent features of character and biology or biological interaction, sustaining us in being from moment to moment. Our unconditional worth is a gift from the Creator. That is why when we speak of the sanctity of human life, we mean not simply that life is a gift given to us at birth, but that it is an ongoing gift as we live out our lives. But more than this, according to the philosophical tradition of the church, our life, through the spiritual soul, is endowed with powers of intellect, imagination, and will. These powers enable us to know ourselves, and to transcend ourselves in knowing the world around us. Ultimately, they allow us to have some knowledge of our Creator, even apart from our faith. Consequently, the Catholic position is to reject reductionism. It does so, first, because reductionism fails to describe the human person adequately, even in secular philosophical terms; and thinkers with no particular claim to religious belief can legitimately reject it. Human persons are more than their physical bodies or corporeal elements. More important, however, reductionism simply does not recognize our ultimate value and destiny or our connection to a community. The following case illustrates this failure.

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The Case of Kristen Barker Kristen Barker is 22 and has Fragile X syndrome. This condition is the most common cause of mental impairment. The full mutation appears in approximately one in 3,600 males and one in 4,000 to 6,000 females. The majority of males with Fragile X syndrome will have a significant mental disability, ranging from subtle learning disabilities to severe mental retardation and autism. Females are also affected, but apparently to a lesser degree. Only about one-third of females have a significant intellectual disability. Others may have more moderate learning difficulties.5 When Kristen visits a new family physician, the physician learns that she has had no consultation about reproduction. He refers her for a genetic work-up so that he can educate her about the issues and help her make an autonomous choice. When he sees her at a later appointment, she has had a tubal ligation. At the genetic work-up she was told that she had a 50 per cent chance of having a child with Fragile X syndrome. However, she confides that she doesn’t know what this result means.

Case Discussion This case raises a number of issues for the family physician. First is the issue of patient autonomy. What does autonomy mean for someone who is incapable of understanding simple odds, and yet had to decide for herself? Was her decision really autonomous, or was she pressured into it? Perhaps a more relational concept of autonomy, which would educate those close to her and involve them in her decision-making, is more appropriate. What was the psychological impact of Kristin’s diagnosis? What was the spiritual impact? The physician can regard this patient in any of three ways: as ‘Fragile X’ (a concept that reduces her to her genetic status); as someone with mental defects (which means she is seen only in terms of her intellectual functioning); or as a person having relationships with others. What is needed is a framework that is more holistic than the mechanistic approach that fragments and reduces the person to her genetic or psychological status.6 We must note that in contemporary bioethics there is a reaction against what is sometimes called the traditional notion of personal autonomy. This view construes the autonomous individual as completely independent of others in thought and decision-making. Such a person is often seen as isolated. The origin of this notion is unclear. Some trace

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it back to Immanuel Kant7 and his stress on personal autonomy. It is also possible that it originates in early modern political philosophy and its emphasis on the rights of the individual over those of the state. Radical libertarians may also champion the notion. In any event, it does not appear to originate in ancient and medieval philosophy. Aristotle8 and Aquinas9 support freedom of choice, but they do not see the person as separated from his or her family and community. Rather, some form of community is natural to humankind. Of course, it is true that some are hermits by choice or by circumstance, but this is not the norm. In contemporary feminist thinking, the notion of autonomy as complete independence has been rejected in favour of a more relational notion of the person. Catholics can share this notion to the extent that we also can construe the individual as a person-in-community, embedded in a network of relationships. These relationships include family, work, unions, professional associations, community, and, ultimately, the church and the communion of saints. Genetic Determinism Genetic determinism takes a definite stand on the long-debated issue of nature versus nurture, genetics versus environment. Genetic determinism basically holds that what we are and what we do are products of our genetic endowment. This stance can take two general forms: strict determinism and broad determinism. Earlier scientists and materialist philosophers, who drew on the physical sciences, advocated strict determinism. These scientists and philosophers held that human nature and behaviour are absolutely determined causally by the physical laws of nature; consequently, there is no such thing as freedom of will. In the genetic version of strict determinism, genes provide the ultimate explanation for what we do; as in physical determinism, we lack the power of free choice. Broad determinism holds simply that individuals are predisposed not only to certain physical illnesses, but even to certain kinds of behaviour. The influence is not, however, absolute. Nature nudges; it does not control completely and inevitably. The strict form is completely at odds with the Catholic conviction that we are creatures made in the image and likeness of God. We are endowed with a spiritual soul whose powers exceed those of matter, giving us intellectual capacity, including, as was noted earlier, the capacity of free choice – which, incidentally, may be used to modify our own health. Denial of the reality of free will renders moral responsibility pointless, and calls into question the notions of both virtue and vice.

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The broad form of genetic determinism is compatible with Catholic teaching, for this doctrine recognizes the power of nature and natural inclinations: the desire to preserve one’s life, to reproduce sexually, to seek knowledge, and to live in a community that is based on the goods of friendship and justice. All of these are basic goods, according to St Thomas Aquinas.10 An inclination is not strictly determining; it allows for the exercise of free choice. Through efforts of will, we can control our natural desires and direct our pursuit of basic goods through the choice of means. At the same time, we must recognize that there are some predispositions to mental or emotional illness – illness that may reduce or impair our capacity to choose – and thus we recognize insanity, addiction, and diminished responsibility in both criminal law and moral evaluation. Perfectionism With the development of reproductive technologies and procedures for genetic testing – both prenatal and carrier screening – and engineering, there is enhanced capacity both to ensure that children are born with fewer problems and to avoid the birth of children with imperfections understood as being at least the more serious defects, such as spina bifida. In the past families were larger and the birth of a child with a mental or physical handicap was seen as God’s will because nothing could have been done to prevent it. As couples in the developed world have smaller families, they want to ensure that the children they do have are free from serious problems. The medical specialties of obstetrics and pediatrics increasingly focus on quality control, not only because of a desire to avoid health concerns, but also because failure to provide testing or advice may leave a physician open to disciplinary action for negligence or to malpractice lawsuits. Consequently, there is a danger that imperfections, or predispositions to serious illness such as Huntington’s disease, will come to be seen as unacceptable. It is a short step from perceiving a condition as unacceptable to seeing the person with the condition as unacceptable. In fact, such attitudes have led to the practice of withholding life-saving treatment in the case of babies born with Down syndrome and duodenal atresia, a surgically correctable birth defect. Here the slope is not only slippery, it is steep. Finally, we may note that while gene therapy to enhance desirable human capacities, such as memory and intelligence, is not very popular

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at the moment, it may come to be so for two reasons: the well-to-do tend to give their children any edge they can; and it is not uncommon even now for athletes, for example, to use drugs, such as genetically engineered erythropoietin, or other means to enhance their athletic performance. Quite apart from the unknown risks of such experimental procedures, there is the question of what will happen to those who are left behind. We note already the phenomenon of the digital divide that separates those with access to the Internet and other related technologies from those without such access. We may come to see a genetic divide between those who have been ‘perfected’ and those who have not. It is easy to see that those who have not will be seen as inferior: the Invalids of GATTACA. These attitudes and practices are clearly opposed to the Catholic teaching on the nature and value of the person. As we noted above, the person, however imperfect in body or mind, is created and sustained in the image and likeness of God. As such, all are radically equal in the eyes of the Creator, and must therefore be radically equal in the eyes of humankind. This radical equality is the basis of the virtue of justice, and it is more fundamental even than equality before the law. (In earlier times, this radical equality was admitted to be the ground of legal equality.) Some have spoken of the genetic duty of couples not to have children if they are at high risk (e.g., have a one-in-four risk) of producing a child with a serious and lethal genetic defect that would likely entail great pain, mental incapacitation, and so forth, at an early age. But suffering is part of our personal spiritual journey.11 Moreover, there are many instances in history in which individuals suffering from a debility or genetic conditions were also born with unique talent of immense benefit.12 Certainly, this genetic duty to avoid harm – if it is a duty – need not entail an attitude of contempt for a child with such a defect. The two cases that follow will illuminate our discussion of perfectionism. The Case of Patricia Smith John and Patricia Smith married late. Mrs Smith is 41 when their first child is conceived. As is common practice, she is offered prenatal testing for the presence of trisomy 21, which is an indication of Down syndrome. This testing can be done by amniocentesis, but only after 14 weeks’ gestation. It can be done much earlier by chorionic villi sampling, which is routinely offered to women over age 35. Mrs Smith agrees to have the latter test. At her age, Mrs Smith’s risk of having an affected child is approximately one

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in 100. When she meets with the genetic counsellor, she receives the news that she is carrying a child with Down syndrome. The counsellor indicates that a therapeutic abortion can be arranged, but in accordance with nondirective genetic counselling, she makes no recommendation about this. The Case of Jennifer Marshall Jennifer Marshall is 36 and pregnant with her second child. She learns through chorionic villi sampling that the fetus is affected by trisomy 18. The prognosis for the child is worse than that for a child with trisomy 21. Children with trisomy 18 have severe developmental handicaps and heart malformations. Most die within six months.13

Case Discussion Prenatal testing for Down syndrome is not new. It was one of the first conditions for which genetic testing was developed. The condition is genetic in the sense that a congenital chromosomal anomaly is present at birth. It is not hereditary, that is, passed on to children by parents in a definite risk group as is cystic fibrosis. Down syndrome is relatively common and involves mental handicap of varying degree; often, affected fetuses are aborted. The Human Genome Project offers the potential for greatly increasing the number of prenatal tests for genetic conditions, as well as for clearly hereditary ones. Prenatal testing is troublesome from a Catholic perspective because, with few exceptions, there is not much that can be done to remedy genetic defects prenatally. This is disturbing for two reasons. First, abortion is the taking of a human life. Second, the life is taken because the fetus is mentally handicapped, and this reflects a social intolerance not only of the handicap, but also of the handicapped person. It is here that Catholic teaching confronts genetic perfectionism. Not too long ago, persons with developmental handicaps, such as Down syndrome, were often kept out of the public eye and housed in large institutions away from the cities, or they stayed at home and out of sight. Later, positive change occurred when many such persons were ‘mainstreamed’ and lived at home or in group homes and attended regular school, and so on. The Special Olympics were created. A degree of normalization occurred. At the same time, the development of prenatal diagnosis through amniocentesis and chorionic villi sampling enabled

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clinicians to test the human fetus for conditions such as Down syndrome. The change in the abortion law in Canada in 1969 enabled abortions on the grounds of genetic defects to be legally performed, although this indication was not explicitly covered in the amended law. This means, ironically, that there are two trends working in opposite directions: one of acceptance of the handicapped, and one working to eliminate imperfection. It remains to be seen which trend will prevail. The risk is that the person with a mental or physical handicap will be generally perceived as one who ‘slipped through the screen’ or, worse, as someone who never should have been born. For instance, some might say that in a medical sense there is no hope for a child with trisomy 18, and that therefore he or she should not be born. For those who see death as the end, the child’s condition is hopeless. As Catholics, however, we recognize that each human being has an immortal soul and that the body will rise again. This recognition is a great source of hope for us all – a hope not for a medical cure, but in the resurrection and for life eternal. Prenatal testing in these circumstances presents an opportunity to prepare for the birth and arrange circumstances in the most supportive way possible. We have already referred to the film GATTACA, which foretells a world in which the Valids are separated from the Invalids. The consequences of this separation are discrimination and disenfranchisement for the latter. One of the questions raised by contributors to this volume is whether prenatal genetic testing should be standard medical practice or a matter of choice for the couple. Should physicians be allowed to refuse to care for a pregnant patient if she refuses to have genetic testing? Catholics may well have an interest in supporting (if not an obligation to do so) the right to choose or refuse such tests – a right supported by the principle of autonomy. In addition, the right to have a test simply for the sake of gaining knowledge must be maintained; it must not be assumed that an unfortunate test result will automatically lead to abortion. Such an assumption makes the testing procedure a search-anddestroy mission. Finally, should autonomy in this context be seen as radically individual or as family centred?14 Some hospital policies on patient confidentiality require that information be given only to the patient. Family and close friends are often excluded. It seems clear that the individualistic notion of autonomy is a limited interpretation, since persons are persons-in-relationships, and especially persons-in-family-relationships. In some circumstances, it is important that family members be included in

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discussions. In other circumstances, the family may be unsupportive or disruptive. However, clinicians should always be aware of the patient’s family and the potential value of the family’s support for their family member.15 Indeed, our reflection here on the bioethics of genetics has serious consequences for other medical areas, such as end-of-life care, and requires that we consider autonomy from a relational perspective.16 The relational and therefore communal character of autonomy leads us into a discussion of the common good and of the effects of commercialization on the common good. Commercialization of Research The commercialization of research raises some important questions: What does it mean to say that researchers can or should be granted property rights to genetic information or, for that matter, to life forms? What are we to make of the present emphasis on biotechnology? It is clear that federal and provincial Canadian governments are committed to the development of biotechnology, among other technologies, to replace our former reliance on resource industries. Catholics need not see technology as bad, or as a force by itself. As Dr McQueen noted in an earlier contribution, technology is an abstraction, not an entity. It does not exist by itself, ‘out there’; it simply consists of technologies, in the form of applied science, that exist in the minds and practices of those who engage in them. Technology has both good and bad uses, and it is necessary to set limits and standards for its use. We are not powerless to stop the advance of a juggernaut; we have the political and legal means to set those limits. Nevertheless, history appears to show that when a given technology promises human benefit, it is likely to be developed in spite of the risks. Perhaps our task is to minimize, rather than eliminate, the risk. As far as the patenting of genetic information and techniques is concerned, the ideal might have been to leave all information and techniques in the public domain, for the public good. In the early days of the Human Genome Project, a French scientist made his sequencing techniques known to the world; he believed that because public funding and charitable donations had supported him, he was obliged to give something back. However, practice elsewhere, particularly in the Unites States, has been to patent such information. Given our southern neighbour’s powerful influence on the market, this trend is likely to continue.17 We must be clear about what we mean when we speak of the commer-

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cialization of research or of property, real or intellectual. We can speak of owning genes discovered through the Human Genome Project. We can speak of owning cell lines. We can speak of owning gametes (sperm and ova). We can speak of owning life forms, such as genetically modified laboratory animals (flies, worms, mice, rats, primates, etc.). As individuals, the entities in question are surely owned by those who created them, simply as physical property. Patenting then comes into play. Some hold that patenting does not entail ownership per se, ‘but rather the right to exclude others from making, using, selling or importing the patented invention.’18 Perhaps a patent is best described as the conferral of a time-limited control over an invention.19 For example, a company may have a patent for a testing procedure, and can therefore control its cost. Such a situation can raise issues of control of access, as in the following case. The Case of Shirley Walters Shirley Walters, aged 37, comes from a family with a long history of breast cancer. Her sister and two of her aunts developed it. She is determined to learn, if she can, her risk of developing this form of cancer. She would like to undergo a recently developed genetic test that is not presently covered by the provincial health plan. She could go to the United States to have it, at considerable extra cost to herself, or have her sample sent to a U.S. laboratory. As Shirley tries to make her decision, a dispute continues between the provincial ministry of health and the test manufacturer over a cheaper, commonly used test. The manufacturer has threatened to bring suit against the government and genetic counsellors who use the cheaper test.

Case Discussion Here we have a particular kind of genetic testing, the kinds and number of which will increase greatly because of results of the Human Genome Project. Such predictive testing will tell the patient her odds of developing a disease in later life. There are three issues in this case: whether it is better to know than not to know, the possibility of discrimination in employment and in life insurance coverage, and the monopoly that the manufacturer holds on the test procedure. Whether it is better to know the diagnosis of a genetic disease or not to know is a personal matter. But potential discrimination in employ-

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ment and in health insurance coverage is a serious issue in the United States, where health insurance is provided primarily by private carriers. It is the promise (or threat) of a vastly increased capacity for genetic testing and screening that provides one powerful argument for maintaining a strong publicly funded heath care system in Canada. Private life and health insurers are businesses with responsibilities to their shareholders to make a profit. It can be argued that they may rightly discriminate in denying coverage to high-risk candidates. Life insurers do so now, for example, when they take into account high blood pressure or obesity, and they will be interested in knowing the genetic profile of future applicants. Hence, the best hope for many predisposed to genetically based illnesses is to have that risk assigned to as large a pool as possible (i.e., through a national health insurance scheme). In the fall of 2001, there was a dispute between Myriad Genetics Inc. of Utah, which holds the Canadian patents on two breast cancer susceptibility genes, and the governments of British Columbia and Ontario. The company threatened lawsuits against both governments if they did not endorse its BRACAnalysis® test. At the time, the Myriad test cost $3,850; the test used in Canadian hospitals cost $1,300. British Columbia’s response was to terminate funding for predictive testing as of July 2001.20 As of June 2006, the company has not launched any legal challenge to the Province of Ontario. Again, we could claim with some justification that the human genome either belongs to no one or to everyone – to the entire human community as a common heritage – just as air and water are common resources. The winner of the 2002 Nobel Prize in physiology or medicine, Sir John Sulston, has long espoused this position.21 (His work with nematode models paved the way for the Human Genome Project, and he serves as director of the Sanger Institute in the United Kingdom.) Other scientists such as David Bentley agree that patenting raw genetic data might hamper future research: ‘It is now widely accepted that patenting of raw genomic DNA sequence or partial or complete gene sequences of unknown function is inappropriate. Such action might well discourage further research and development by others, for fear that future inventions downstream of the gene sequence itself could not be adequately protected.’22 However, patents for several thousand gene sequences have been granted in the United States and Canada. We have already mentioned that it may be too late to reverse this trend. If so, the alternative is to begin to reassess the patent process. It is clear that, in general, inventors, researchers, and manufacturers have the right to patent their prod-

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ucts and to have a fair return on their investment in them, just as pharmaceutical companies do with their products. But given the enormous toll that some illnesses like cancer take in terms of incidence, suffering, mortality, and health care costs, and its effect on the human good of health, it may be appropriate for government to set limits to patent protection and to the amounts that can be charged. This is similar to the way in which government determines drug costs. What is fair, of course, is not easy to determine, but there ought to be a process of consultation or negotiation, rather than a right simply to charge whatever the market will bear. Review of the Patent Act A report prepared for the Government of Ontario advocates a review of the Patent Act as it relates to gene patents. The report advances a number of proposals for changing the terms and process of patent protection, while not stifling the development of biotechnology, and while honouring Canada’s international agreements. The proposals include the following stipulations: • Ensuring that appropriate protections are established to protect health care professionals and institutions from legal action pertaining to their use of genes or DNA sequences. • Allowing patents, but not allowing one gene patent to control the subsequent medical use of that gene sequence. • Developing new patent office guidelines, procedures, and training about novelty, non-obviousness, and utility as these relate to genetic patents. • Clearly defining patentable subject matter so as to exclude broad genetic patents covering multiple potential uses, and limiting patents to clear and well-defined specific uses. • Expanding the ‘methods of medical treatment’ exclusion in the Patent Act so as to establish explicit liability protection for medical practitioners providing publicly funded medical services, including genetic diagnosis. • Adopting a public morality provision that would grant the commissioner the power to reject patents deemed to violate Canadian morality, which might also pertain to cloning and stem-cell processes.23 • Introducing an opposition period of nine months upon issuance of a gene patent, to allow for challenges to the patent.

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• Establishing a special court to review patent decisions. • Revising the compulsory licensing provisions in the Patent Act to cover genetic diagnosis and screening tests in the public health care system, which would allow the Commissioner to grant such a licence and set the royalty rate.24 Were recommendations such as these in place, the dispute between the provincial governments and Myriad Genetics might never have arisen. These recommendations appear to be reasonable measures that will set limits, while still encouraging the development of potentially beneficial technology. In view of the church’s robust teaching on social justice, including the assertion that the goods of the earth are to be shared,25 and our claim that the human genome is the common biological heritage of humanity and that the knowledge of this genome is part of the basic good of knowledge, it follows that these goods should be shared by all; they should not be the intellectual property of the few. Catholics can thus readily agree with the position of Dr Sulston on the patenting of human genes. Patenting of Human Beings? Finally, we can speculate about future patenting of genetically modified human beings. It is clear that there is a long tradition of patenting pharmacological information: the molecular structure of drugs and other compounds. Patent protection has been given to this property to allow manufacturers to recoup the costs of research and development, and to make a profit for shareholders. There is nothing inherently wrong with this for any invention. Is there something so qualitatively different about human gene sequences, cell lines, gametes, and embryos that society should exclude them from public or private ownership? Might it be possible in future to patent a genetically modified human being in the same way that the Harvard mouse and other laboratory animal lines have been patented? Here we note that society has already set some limits. One may not own another person. (Catholic teaching does not even say we own our own bodies, but rather that we hold our bodily lives in trust.) Provincial law on organ transplantation generally forbids the sale of human organs or parts. It similarly limits possession of dead bodies to their proper disposition. It appears, then, that society may well have the means through

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ethical standards and the law to set limits to the more extreme patenting possibilities. That is fortunate, as the potential for harm has been portrayed for many years in literature (e.g., in Mary Shelley’s Frankenstein). It seems to us that persons as subjects are quite distinct from objects, which may be owned or changed without deep reflection and respect. This is at least partly because of the dignity of the human person and the interconnectedness of the human gene pool. In addition, when it comes to human cells, whether somatic or germline, the Royal Commission on New Reproductive Technologies has determined that the Canadian public is generally opposed to the commodification of human gametes and embryos.26 Catholics can surely concur with this stance. This leaves open the question of whether such an interest, even if not property in the strict sense, can be freely donated to others. Because of the traditional position on the integration of the goods of marriage, the Catholic stance might well be stricter than present practice and the stance of the royal commission, which is to continue to allow sperm and egg donation to assist couples to reproduce, but to regulate these practices. With regard to the developing human, we must take an even stricter view. The human embryo must be presumed to be a living person at an early stage of development. It is inherently wrong to own an embryo who is a person created in the image and likeness of God and destined for eternal life with God, just as is any person born alive. As in the case of the experimental mouse, a patent on the information, techniques, and processes required to produce a genetically modified developing human would not necessarily entail owning such individuals. Consequently, a genetically modified human zygote, embryo, or fetus would not necessarily be owned by anyone, including its parents. But the close notional relation between patenting and ownership in the public mind should be cause for concern. In spite of the distinctions just made, it would be prudent to oppose strongly patenting of techniques for producing such nascent humans, since to allow such patents would make persons into objects.27 It follows that if the stages of human life noted above should not be a matter for patent protection, then neither should genetically modified children born alive. It may seem that present law suffices to prevent such patenting. However, challenges may come. If some secular thinkers can find no significant difference between an animal species and the human species at the genetic level, then this is possible. If it occurs, it must be sharply resisted. In the Western world, no one can legally own

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another person. Consequently, the existing law in this respect must be upheld and strengthened. Any effort to patent a genetically modified human being, either prenatally or postnatally, must be opposed on the grounds that this might suggest ownership of human beings. Genetics in the Context of Health Care Reform in Canada The report of the Commission on the Future of Health Care in Canada, Romanow issued in November 2002, does not present a strict definition of health. However, the commissioner noted in a discussion of health determinants that ‘spiritual, emotional and physical well-being are often inextricably linked.’28 The report does explicitly address genetics in this context and also recognizes the possible dangers in some forms of research: New health care technologies also have the potential to raise serious social and ethical considerations, particularly in areas such as biotechnology, where issues such as cloning, eugenics or new genetic and reproductive technologies pose troubling and complex questions that go well beyond science or medicine. Accordingly, suggestions have been made that processes for technology assessment need to be transparent, accountable and allow for meaningful input from Canadian citizens.29

The report also proposes the creation of a future genomics centre, following the establishment of centres for health innovation.30 The recommendations listed above promise an opportunity for Catholics to make known their views on these topics. As the commissioner notes, the system is not on autopilot. The 1981 Lalonde Report31 recognized that there are four central elements in the health field concept: human biology, environment, lifestyle, and the health care organization. The authors of the report argued that simply increasing the funding of the health care system would not substantially improve the health of Canadians. Greater attention would have to be paid to the other three elements: biology, including genetics; environment; and lifestyle factors. The authors saw the need but did not overly stress the role of genetic research in health. Since that time, the genetic research has grown enormously, fuelled in great part by the development of such techniques as recombinant DNA technology, and by the Human Genome Project, with its attendant techniques for gene mapping and sequencing. Municipal, provincial, and

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federal governments have enormous interest and investment in biotechnology.32 The interest and investment are consistent with Canada’s shift from resource-based industries to information- and technology-based enterprises. The depth of this commitment cannot be underestimated. It will doubtless have a major influence on the future restructuring of health care. But some questions must be asked. Should genetic technologies be publicly funded? If so, which ones? Will access to the benefits be accessible to all? We have seen that the tests for breast cancer are expensive. If the costs are not publicly funded, or limited by patent reform, then the tests will be accessible only to the relatively affluent. Thus there will be pressure to include genetic tests in the publicly funded system. How much money should be allocated to genetic technology, rather than to the environmental and social determinants of disease? When technology cannot cure, as is the case with terminal illness, how much should be allocated to alternatives, such as palliative care? The development of biotechnology doubtless has great promise of good in improving our understanding of diseases, and in preventing and curing those diseases. However, there is a risk in relying too much on technical fixes for ill health, and possibly downplaying the role of environmental causes and social determinants. Poverty, homelessness, alcohol and drug addiction, poor diet, and obesity, to name a few factors, all contribute to ill health. Neglect of these in favour of overreliance on biotechnical solutions would be imprudent. Debate rages at present over implementation of the Kyoto Accord to preserve the environment. Let us also remember the damage done in Ontario by lack of quality water control. The tragedy of the tained water scandal in Walkerton could happen in many places if standards and practices of quality control were relaxed for financial reasons. Just as modern sanitation was a major contributor to improved human health, so lack of attention to air and water pollution could set us back. Would it be possible in the future to modify human beings genetically to make them more resistant to air pollution? Or would it be better to fix the problem of factories and motor vehicles that contribute heavily to the pollution of the atmosphere? Here, concerns for human health and the environment coalesce. If justice and peace in the human community, and a harmonious relationship with the natural environment are terminal or basic goods – the marks of the kind of society we Catholics want to have – the answer is clear. Are we powerless to influence the direction in which technology is moving? Let us remind ourselves again that technology rests in the

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hands of human beings, whether they are acting in universities, companies, governments, or other groups. Developments do not happen by chance. Options are deliberated. Choices are made. Governments have some power to steer the direction of this development. Catholics can influence the decisions their governments make. Not to do so would be fatalistic, and contrary to our responsibility to do what contributes to human flourishing and to reject what does not. Final Thoughts: War versus Community A number of bioethicists have used the metaphor of war when speaking of genetic research and its clinical applications. We speak of the ‘war on disease.’ We speak of the ‘weapons’ against disease. We speak of ‘searching and destroying’ and ‘magic bullets.’ However, as commentators on the AIDS epidemic have noted,33 war language has some very negative connotations. War is divisive and fragmenting. In wartime, civil rights are often suspended through martial law, and the end (victory) is often seen as justifying the means. What is needed is a unifying language of community or solidarity, which does not isolate people, but rather brings them together. We especially need unification to achieve the Catholic preferential option for the poor and the marginal – those who are the first to be isolated. As bioethicists, physicians, philosophers, and theologians, we realize that being is not abstract, but always concrete;34 and we seek to evaluate genetic issues with openness, attentiveness, intelligence, reason, and responsibility.35

NOTES 1 See Genizon Biosciences, online at http://www.genizon.com. 2 See GlaxoSmithKline’s program: http://genetics.gsk.com/determin.htm 3 Hannah Arendt, Eichmann in Jerusalem: A Report on the Banality of Evil, revised and enlarged edition (New York: Penguin Books, 1994); Hannah Arendt, The Origins of Totalitarianism (New York: Harcourt Brace Jovanovich, 1976); Guenter Lewy, The Catholic Church and Nazi Germany (Boulder, CO: Da Capo Press, 2000). 4 See Thomas Aquinas, Summa theologiae, I, qq. 75–89. 5 Dale Fast, The National Fragile X Foundation, online: http://www.nfxf.org/ html/home.shtml. 6 Russell J. Sawa, ‘Integrative Thinking in Medicine: The Underlying Assump-

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tions about Reality to Expand the Horizon of the Physician,’ Ultimate Reality and Meaning 24/4 (2001) 305–23. Immanuel Kant, Foundations of the Metaphysics of Morals, and What Is Enlightenment? trans. Lewis White Beck (Indianapolis: Bobbs-Merrill, 1959) 58–63. Aristotle, Nicomachean Ethics, book III, chapters 1–3. Aquinas, Summa theologiae, I-II, q. 13, a. 6. Ibid., q. 94, a. 2. See Simone Weil, Gravity and Grace, trans. Arthur Wills (New York: Putnam, 1952). Stephen G. Post, ‘Selective Abortion and Gene Therapy: Reflections on Human Limits,’ Human Gene Therapy 2/3 (1991) 229–33. James Scott Thompson and Margaret W. Thompson, Genetics in Medicine (Philadelphia and Toronto: W.B. Saunders, 1973) 152. Ronald J. Christie and C. Barry Hoffmaster, Ethical Issues in Family Medicine (New York: Oxford University Press, 1986). Anne Donchin, ‘Understanding Autonomy Relationally: Toward a Reconfiguration of Bioethical Principles,’ Journal of Medicine and Philosophy 26/4 (2001) 365–86; Catriona Mackenzie and Natalie Stoljar, eds., Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self (New York: Oxford University Press, 2000); Chris MacDonald, ‘Nurse Autonomy as Relational,’ Nursing Ethics 9/2 (2002) 194–201; Carolyn Ells, ‘Shifting the Autonomy Debate to Theory as Ideology,’ Journal of Medicine and Philosophy 26/4 (2001) 417–30. Birgitta Andershed and Britt-Marie Ternestedt, ‘Being a Close Relative of a Dying Person: Development of the Concept “Involvement in the Light and in the Dark,”’ Cancer Nursing 23/2 (2000) 151–9; Russell J. Sawa, ‘Dignity in Death,’ in Family-Centered Medical Care: A Clinical Casebook, ed. William J. Doherty and Macaran A. Baird (New York: Guilford Press, 1987) 85–6; Philip Behman, ‘A Good Death: Spiritual Issues Related to Dying Well,’ paper presented at ‘Spirituality and Health’ conference, University of Calgary, 24–6 May 2001. Governments, however, have the power to set limits. In the case of pharmaceuticals, there are limits to the period a patent is effective before generic versions can be made. Governments can also set limits to the price of drugs. Prices in Canada are generally lower than in the United States, and this leads to cross-border shopping by U.S. residents, and even to the practice of prescription filling over the Internet. Ontario draft report to premiers, Genetics, Testing and Gene Patenting: Charting New Territory in Health Care: Report to the Provinces and Territories (Ottawa: Government of Ontario, 2002) 33. Available online at: http://www.health

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20 21

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.gov.on.ca/english/public/pub/ministry_reports/genetic srep02/ report_e.pdf In the case of the patent for a genetically modified mouse, the patent does not confer ownership of the individual animals, but rather of the information and techniques by which they can be generated as a distinct set or strain. One might hold the patent to produce the new mouse strain without actually owning any of the individual animals; these might be owned by others such as animal laboratories, which can purchase a licence to produce the mice. Thus a patent for a life form need not entail ownership of the life forms, just as a patent for a new tool need not entail owning all the tools produced under the patent licence. Lynda Hurst, ‘U.S. firm calls halt to cancer test in Canada.’ Toronto Star, 11 August 2001, p. A01. Available at http://thestar.com Sanger Institute, ‘Sir John Sulston awarded the 2002 Nobel Prize for Physiology or Medicine’ (press release). Hinxton, UK: Sanger Institute, 7 October 2002, online: http://www.sanger.ac.uk/Info/Press/2002/021007.shtml. ‘When results are shared freely amongst the biological community, as has been done for the worm [C. elegans] and the Human Genome Projects, specialist scientists can move much more rapidly towards their goals. This flow of information, which builds in strength as it circulates, benefits medicine.’ David R. Bentley, ‘Genomic Sequence Information Should Be Released Immediately and Freely in the Public Domain,’ Science 274/5287 (1996) 533–34. Available at: www.sanger.ac.uk/HGP/policy-forum.shtml. A libertarian position can easily favour harvesting stem cells from human embryos. A utilitarian could either favour it or reject it, depending on whether the human embryo is deemed to be a person or not. If the embryo is a human person, and if the terminal good is happiness, it could be argued that this is treating human beings as commodities. The social consequences of doing this are unacceptable. A Kantian could argue that this practice involves treating human beings as a mere means to an end. Genetics, Testing and Gene Patenting, available at: http://www.health.gov.on.ca/ english/public/pub/ministry_reports/genetic srep02/report_e.pdf. See Gaudium et Spes, no. 69; Populorum Progressio, no. 22. Royal Commission on New Reproductive Technologies, Proceed with Care: Final Report of the Royal Commission on New Reproductive Technologies, vol. 1 (Ottawa: Canada Communication Group, 1993) 55–6. See Bernhard Häring, Ethics of Manipulation: Issues in Medicine, Behavior Control and Genetics (New York: Seabury Press, 1975). Roy J. Romanow (Commissioner), Building on Values: The Future of Health Care in Canada, Final Report (Ottawa, ON; Saskatoon, SK: Commission on the

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Future of Health Care in Canada, November, 2002) xix. Available at: http:// www.hc-sc.gc.ca/english/pdf/romanow/pdfs/HCC_Final_Report.pdf Ibid., 83. Ibid., 88. Marc Lalonde (Minister of Supply and Services Canada), A New Perspective on the Health of Canadians: A Working Document (Ottawa: Government of Canada, 1981). Who are the beneficiaries of biotechnology investment? Clearly the government and the public are, because nine out of ten diseases have a genetic element. Who are the burdened? They are those without treatment for the diseases, embryos, and researchers unable to obtain a patent for their discoveries when others do so. Again, what kind of society do we want to be? A lifeaffirming one, or one that searches out and destroys the imperfect, that sacrifices some humans for the benefit of others? The important question is whether a technology promotes the flourishing of the basic goods while limiting the possible risks. James F. Childress, ‘Mandatory HIV Screening and Testing,’ in Contemporary Issues in Bioethics, 5th ed., ed. Tom L. Beauchamp and LeRoy Walters (Belmont, CA: Wadsworth, 1999) 741–58, at 754–6. See also Leroy Walters, ‘Ethical Issues in the Prevention and Treatment of HIV Infection and AIDS,’ in Contemporary Issues in Bioethics, 716–17. Reprinted from Science 239/4840 (5 February 1988) 597–603. Bernard Lonergan, ‘The Subject,’ in A Second Collection: Papers by Bernard J.F. Lonergan, S.J., ed. William F.J. Ryan and Bernard J. Tyrrell (London: Darton, Longman & Todd, 1974; reprint edition, Toronto: University of Toronto Press, 1996) 69–86. Ibid. See also Bernard Lonergan, Method in Theology (New York: Herder and Herder, 1972; reprint edition, Toronto: University of Toronto Press, 1990).

11 Expanding Horizons for Moral Discernment: A Retrospective Synthesis william f. sullivan

A century ago a farmer working in his field was startled by a galloping horse racing toward him, pulling a wagon and rider. As the horse and wagon flew past him, the farmer called out, ‘Where are you going in such a hurry?’ From a rising cloud of dust into which the wagon disappeared came a voice, ‘I don’t know. Ask the horse!’ A half century ago James Watson and Francis Crick discovered DNA, and the modern era of genetics took off. During the last fifty years, developments in the field of genetics have occurred at an increasingly rapid rate. These developments raise technical possibilities for humanity that are both magnificent and frightening. Today, as we observe these developments and trends in genetics, our situation seems in many ways similar to that of the farmer a century ago. We are startled by the frantic pace of developments in genetic science and wonder where they are taking us in such a hurry. This volume can be considered as an effort to understand some of the possibilities that modern genetics creates, and as an attempt to expand the horizon within which to discern better the ethical implications of these possibilities. In the end, the possibilities and trends that need to be recognized, embraced, and promoted are those that serve the human person and human life. Contrary trends need to be recognized at an early stage and reined in. A point of departure for my efforts to highlight some connections between Parts 1 and 2 of this volume is the notion of the geneticization of health care and medical research. My aim is to underscore how the papers of Part 2 address this notion and provide the foundations for a broader understanding of health, illness, and disability, and, consequently, the relation between genes and persons. Geneticization, or what Barry Brown has referred to as genetic reduc-

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tionism, rests on the assumption that illness and disability are problems that can be reduced to diseases caused by wayward genes. Those who judge genetic reductionism to be a positive trend in society tend to value the eradication of diseases by changing or eliminating certain genes. When these options are not available, the response turns to efforts to prevent the occurrence of these diseases. This is typically done by either altering the reproductive plans of human carriers of ‘defective’ genes (for example, sterilizing of the woman with Fragile X, or screening and selective implanting of IVF embryos), or by aborting embryos or fetuses that have been found to have some defect by means of prenatal screening tests, like those used to detect conditions such as Down syndrome. This notion of genetic reductionism, then, has influenced the way many people understand the relation between genes and persons. Consequently, differing understandings of this relationship are sources of many opposed stances on ethical issues in human genetics. They involve pre-empirical claims and stances that individuals bring to issues in genetics, rather than empirical claims discovered in the data of genetics.1 The recognition that many of the ethical disputes highlighted in Part 1 rest on issues that go beyond the biological data itself is the reason for addressing some of them in Part 2. From Genes to Persons In different ways, the follow-up papers of Part 2, if taken singly, provide a critique of genetic reductionism, and if taken collectively, propose a positive alternative to it. What emerges from these discussions is a broader understanding of the human person, and hence of the human good, of health, and of its absence in disease, illness, and disability. Cynthia Crysdale addressed one set of pre-empirical issues related to various understandings of the character of moral value. She highlighted the fact that the moral good that one chooses does not merely involve a single entity or quality, as many people tend to think. Rather, it involves the choice of a dynamic set of concrete relations that creates new conditions for cultural progress or decline.2 She went on to outline the elements of moral choices by distinguishing particular goods (for example, some genetic intervention), the good of order (a system that regularly delivers particular goods), and terminal values (for example, the ultimate good sought). Crysdale showed how civil libertarians, utilitarians, and deontologists each tend to focus merely on one of these elements, with the result that the character of moral value is distorted. Civil liber-

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tarians, for instance, tend to focus on particular goods, overlooking the fact that their choices contribute to the good of order and have some impact on the terminal values of society as a whole. With respect to the ethical disputes about particular genetic interventions, Crysdale’s account of the character of moral value locates the key issue as one of choosing terminal values and recognizing that these are critical choices that contribute to the progress or decline of a society. Gordon Rixon’s contribution added the religious dimension to our consideration of the human person. He argued that at the core of the intellectual, moral, and religious dimensions of the human person is wonder.3 This wonder manifests the unrestricted desire to know that characterizes the human person as an embodied yearner whose ultimate yearning, and resting, is for and in the Creator. Building on wonder, the various dimensions of a person can be transformed through a series of conversions: intellectual, moral, and religious. Moral conversion is explained as a shift in the orientation of a person from basing decisions on a pragmatic calculus of pleasure and pain, which may or may not reveal the good, to basing them on responses to values. Distinct values are related to one another according to an ascending scale, from biological, social, and cultural to personal and religious values. Each later value sublates the earlier. This scale of values relates and ranks various possible terminal values, some of which were discussed by Crysdale. At issue in disputes about terminal values or the ends of genetic interventions are opposed interpretations or orderings of values. Such disputes might involve different scales of values. Part 2 concluded with John Dool’s contribution on the specifically Catholic religious horizon for discerning particular ethical issues and Albert Moraczewski’s response. Dool spoke of the distinct roles of the magisterium, theologians, and the conscience of individual Catholics in discerning normative positions on particular ethical issues. In his response to Dool’s paper, Moraczewski insisted that although these three do play a role, the should not be considered to be on the same footing. Rather, the magisterium has the responsibility for teaching ‘the authentic interpretation of the sacred scripture and its applications to specific doctrinal and moral issues.’4 Still, as Michael Vertin pointed out in the Introduction, it is important to distinguish sharply between ‘the judgments deemed cognitionally valid by other persons and communities, whether past or present, and the judgments deemed cognitionally valid by oneself and one’s own community.’5 In the area of genetics, as Joseph Boyle pointed out, there is relatively little explicit magisterial

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teaching to which Catholics may turn.6 In addressing genetic issues that are not yet prescribed by Catholic teaching, the goal for Catholics is to reach judgments that accord with their most authentic personal orientation. Dool insists that such an orientation is based on one’s own intellectual, moral, and religious conversion, and that of one’s community. The careful study of others’ judgments by oneself and one’s community, which includes theologians and the magisterium, is an important step in pursuing the goal of reaching judgments that accord with one’s most authentic personal orientation.7 An illustration of these converging elements in a particular ethical discernment was given in Boyle’s discussion of Pius XII’s defence of marriage and of the rights of couples to engage in procreative acts within marriage. For Pius XII, although geneticists or other authorities can advise couples about their genetic condition and its negative implications for their offspring, they should not forbid married couples from procreating, even given the risks. He admitted that ‘there might be other motives, especially of a moral or personal nature, which are of such importance as to authorize the contracting of marriage or its use.’8 In such a case, the magisterial position refrained from making a moral proscription of procreating on the basis of genetic risk alone. In situations such as these, Pius XII places the discernment of procreative decisions within the larger framework of the Church’s teaching, leaving the particular judgment not to the horizon of geneticists but to the consciences of the couple involved. What emerges from this discussion is a vision of a specifically Catholic religious horizon of moral discernment. This horizon is specified to some degree by Catholic teaching. And that horizon provides a context for individual Catholics to assess critically the judgments of others, in this case geneticists, and to make their own authentic judgment with the support of their community. In different ways, the papers of Part 2 collectively address the tendency toward genetic reductionism, which became evident in the issues raised in Part 1. This reductionism tends to focus on the genetic dimension of the human person in a way that isolates this dimension from other dimensions of the person. Part 2 was an effort to highlight some of these other dimensions, particularly the dimension of human persons as embodied yearners seeking to know what is true and good in relation to themselves, their physical and interpersonal environments, and the transcendent. Such an account of the human person underscores the unity of a person’s bodily, intellectual, and spiritual functions, a unity that is put at risk by increasing specialization in medicine.9 The

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challenge, then, is to show concretely how such a horizon of moral discernment can redress some of the tendencies of genetic reductionism in medicine. From Horizons to Discernment In her contribution to this volume, Anne Summers used the case of Cathy, age 50, to illustrate the issue of genetic reductionism in screening tests for breast cancer. In Part 3, Barry Brown and Russell J. Sawa developed this case further when they discussed the issue of patenting such tests. I would like to add another dimension to the case by drawing on the situation of a real patient, to show how some of the pre-empirical issues examined in Part 2 can influence decision making in a clinical context. Assume that after Cathy is diagnosed with breast cancer, her 18-yearold daughter, Sarah, decides that she would also like to be screened for the breast cancer gene. Given her strong family history of breast cancer, a disease from which several of her relatives had died in their fifties, Sarah decides that she will do whatever is necessary to avoid a similar fate of suffering and premature death. She is aware that if she tests positive for one of the two breast cancer genes, she would have about an 80 per cent chance of developing breast cancer, while only a 10 per cent lifelong chance if the tests are negative. Based on this information, she decides that if she does have a breast cancer gene, she will request the removal of her breasts and ovaries in an effort to avoid her likely fate. Her mother is horrified by her request and says that Sarah is not even married, and that if she has this surgery she would be ruining her life. Besides, her mother points out that she is still undergoing treatment and is confident that she will overcome her cancer. How might the discussions of Part 2 shed light on this case? In coming to this judgment, Sarah and her mother, Cathy, are highlighting, through their performance, the two basic philosophical questions that were mentioned by Michael Vertin in his Introduction: ‘(1) What acts do I experience myself performing whenever I am at least apparently knowing?’ and ‘(2) Why, if at all, does performing those acts constitute valid knowing?’10 As Vertin summarized, acts of apparent knowing culminate in judgments, and ‘reaching a judgment is always a process of three or four steps: attending to data, forming a hypothesis about the intelligible unity of those data, affirming the reality of that intelligible unity (or denying it), and – where pertinent – affirming the goodness of that reality (or denying it).’11 In answer to the second ques-

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tion, valid knowing is the result of performing each of these steps in a skilled or authentic manner. In helping Sarah and her mother to discern what to do in this issue, the caregiver might need to review and facilitate these distinct and related steps. First, there is the attending to data, which might primarily involve encouraging Sarah to articulate her past and present experiences and her hopes and fears about the future, including her anticipation of the possibility of her mother’s premature death. This involves the skill of being attentive. Second, there is the forming of a hypothesis or understanding what her family history might mean for her, and having insights into these data. This involves the skill of being intelligent in recognizing patterns, correlations, similarities, and differences. Third, affirming the reality of an intelligible unity involves verifying the fact of her risk of breast cancer and possibly quantifying this risk by genetic testing. It also involves affirming or denying various ways that this risk could be reduced, such as by the proposed surgery. This involves the skill of being reasonable, of carefully checking and weighing evidence, and avoiding being too rash or too hesitant. Fourth, there is the phase of affirming the goodness of the reality just affirmed (for example, proposed surgery in light of a high risk of breast cancer), or denying it. This involves the skill of being responsible in identifying, ranking, judging values, resolving conflicts between opposed values, and following through with decisions and actions. Ethical decisions are suspect if any step of this process is omitted or poorly made. A crucial move in this case is the move from fact to value judgments. Here, the relevant elements of value judgments and decisions that Crysdale highlights need to be used to analyse the case. They include: (1) the end or terminal value that is sought (i.e., the ultimate good one is consciously attempting to realize, which in this case is a life free of suffering and death from breast cancer); (2) the particular good or means to this end (i.e., the kind of action, such as the surgery being considered, which can also include a decision to refrain from acting); and (3) the circumstances, including the effect on the good of order that allows for the regular delivery of particular health care goods (for example, the who? when? how? where? questions, including foreseeable consequences or side effects, and the affordability of such tests and preventative treatments for the health care system). The sort of questions this analysis raises includes those that ask whether the particular means being considered (i.e., surgery if the risk of breast cancer is high) is the only alternative possible for realizing the

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desired end in these circumstances, or whether there are other alternatives that need to be considered and explored (for example, would delaying surgery, or more frequent monitoring for cancer be responsible alternatives?). One also needs to ask whether the desired end in these circumstances (reducing the risk of suffering and death from breast cancer) entirely, partly, or never justifies the proposed means (surgical sterilization). (Note that whether the end entirely, partly, or never justifies the means is a pre-empirical matter.) The main point is that investigators bring such stances to particular empirical issues in genetics and that such differences frequently go unnoticed even when they account for differences on the particular issues. The conflict between Sarah and her mother may relate not to differences in their ethical decision-making skills, but rather to their differing notions of the good or of happiness. This difference can be thought of in terms of terminal values, or of scales of value preferences, as Rixon elaborated in reference to Lonergan. Robert Spitzer has developed a slightly modified scale of values in his book Healing the Culture.12 For him, such a scale becomes the basis for identifying differing effective notions of happiness for individuals and cultures, and for a cultural analysis and critique. Terminal values are what one specifies in answering the question, ‘What makes you happy?’ Although answers differ among people and cultures, these answers can be classified and related in a helpful way to a structure that ranks values according to a progressive expansion of horizons of interest, or of levels. Level 1 concerns vital goods. It refers to the goodness of physical states and to material things that contribute to one’s continued existence, health, and comfort. Level 2 involves a notion of happiness that is connected to the good of the individual’s ego or sense of accomplishment. It refers to the goodness of one’s identity, achievements, and independence. Level 3 refers to a notion of happiness that is connected to social and cultural goods. Such happiness involves relationships and one’s capacity to give and receive from others. Level 4 involves a personal and religious notion of happiness. On this level, happiness is found in relation to ultimate meaning, to unconditional beauty, truth, reality, and love. The earlier levels condition the latter, while the latter go beyond the earlier. Level 4 is consistent with the orientation of intellectually, morally, and religiously converted persons and communities, as described by Rixon and Dool. Such a scale of preferences is a tool for identifying the terminal values to which persons and cultures are oriented. In the example just men-

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tioned, it would seem that Sarah is oriented to the vital good of health and longevity (Level 1). She desires to secure this good even if the means to do so undermine other possible goods, such as childbearing. It might also be the case that Sarah considers the passing on of her genetic vulnerability to breast cancer to her children to be a vital disvalue. Failing to perceive an immediate threat to Sarah’s life, her mother’s orientation seems to be to Levels 2 or 3. If her mother conceives of happiness in terms of social relationships and capacities to give and receive from others, relationships that characteristically occur in marriage and motherhood, she would rightly perceive Sarah’s choice as undermining this future happiness, even if it did reduce her risk of breast cancer. On the other hand, Sarah might respond that she too is oriented to higher-level understandings of happiness but given her concrete circumstances, certain kinds of goods belonging to higher levels are effectively ruled out for her. In this latter case, it is helpful to recognize that the dispute between Sarah and her mother does not stem from differing orientations to terminal values. Besides helping to identify different types of terminal values, such a scale of values also provides a tool for interventions. By encouraging the progressive expansion of horizons of interest and moral discernment, clinicians can help promote dialogue about differing values among patients and family members, and so enable them to consider their own happiness from more expansive horizons. In order for clinicians to help patients avoid genetic reductionism, however, they themselves need to avoid this tendency in their care of patients. This is particularly true of specialized medicine, which owes its success, in part, to its ability to abstract medical understandings of problems from the whole of the patient. Such a procedure needs to be complemented by a continual effort to consider the unity of bodily, affective, intellectual, and spiritual functions of persons. Reductionistic and Holistic Approaches to Health Care The problem of medical reductionism has been contrasted to a holistic approach to care. According to Daniel Sulmasy, a ‘holistic approach to healing means that the correction of the physiological disturbances and the restoration of the milieu interior is only the beginning of the task. Holistic healing requires attention to the psychological, social, and spiritual disturbances as well.’13 Alfred Tauber likewise argues that medicine is, by its very character, holistic in orientation.14 Both thinkers would

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contend that good medical care of patients as persons includes, but is not limited to, attention to certain biological questions in medicine. It is medicine’s ability to deal with the emotional, social, moral, and spiritual aspects of persons, typically considered to be outside of its biological boundaries, which enables it truly to care for patients. In the end, clinical medicine is holistic to the extent that it integrates the natural and human sciences, and it is the human side of medicine that counters the tendency toward reductionism. Integrated, Multidisciplinary Research in Bioethics I will close with a few reflections on what I would regard as the main achievements and conclusions of this first group experiment in using functional specialization for a multidisciplinary investigation of bioethical questions. An important methodological achievement of this investigation was the three-part structure that was developed for it. As Vertin has explained, a fundamental distinction underlying these divisions was that between empirical and pre-empirical issues. Part 1 provided a helpful primer on important current bioethical issues and debates in human genetics, drawing on the contributions of various related empirical disciplines. Part 2 highlighted some key pre-empirical components of these opposed positions, drawing on more general contributions from moral philosophy, philosophy of religion, and Christian and Catholic theology. Part 3 presupposed the two preceding parts and the method of functional specialization, and facilitated the discovery of normative answers for the issues raised in Part 1. The advantage of this three-step investigative process was that it allowed for the distinct contributions of the natural and human sciences and their subsequent integration. In so doing, it brought the natural and human sciences into dialogue. By differentiating the empirical from the pre-empirical components of opposed positions on issues in human genetics, this process allowed us at least to pose some of the key ethical questions that need to be raised, in order for them to be adequately addressed. The structure also related the sciences and humanities to one another in such a way that each contributed to the flourishing of the whole investigation. Part 3, finally, allowed us to move from posing questions to determining normative stances on particular issues in human genetics that were consistent with normative stances taken on the pre-empirical issues discussed.

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The disadvantage of this three-step collaborative process was its novelty and complexity. This complexity was particularly challenging, given the number of investigators involved in what was, for many, a first experience in a collaborative interdisciplinary investigation. To the extent that the parts enabled the whole to flourish, deficiencies in the parts also limited the achievements of the whole. Nevertheless, it is no small achievement to work out a general and novel method for collaborative research in bioethics. What was accomplished here can be a benchmark for future efforts. A number of important themes and conclusions were reached as a result of this methodology, and they are worth summarizing. They stem from discussions of (1) the scientific possibilities of human genetics, (2) the social and cultural forces shaping the goals of genetic science and health care, (3) the human dimensions of suffering and health care, and (4) spiritual and religious considerations. I will briefly summarize these themes and conclusions in relation to individuals and families confronting issues in genetics. First, it is important for individuals and families to develop a degree of scientific literacy. Here, there is a real need for skilled genetic counsellors to assist in this task.15 Genetic science is at a stage where it can predict many diseases but has little to offer by way of treatment. It is important to be accurately informed about genetic risks and to be aware that genetic reductionism and determinism are each too narrow a way of looking at most questions involving genetic risk. Accurately understanding the genetic facts, therefore, is an important first step in moral discernment. Second, it is important for individuals and families to be aware of various social and cultural forces that may influence their decisions about using genetic technologies. The attitudes of perfectionism, materialism and consumerism discussed in this volume promote images of human flourishing that can engender a misplaced enthusiasm for genetic technologies. In this context, our desire to know and control our future, and our fear of suffering and death, can be used to create and exploit markets for genetic technologies. Although these developments might be of commercial interest to those who stand to benefit from them, we need to ask how such technical fixes will effect the collective good that health care is trying to promote. It is important for individuals and communities to be involved in this cultural debate and to be critical of the role of institutions, including universities and governments, in promoting technologies from which these institutions stand to benefit. Third, beyond the scientific meaning of health care is its human

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meaning and value. Having understood the possibilities of genetic science and what they might in fact mean for us and our families, it is important to evaluate them within a health care context that attends to more than the biological dimension of people. Such a broader context would also attend to the psychological, social, and spiritual dimensions of people. What is needed is a health care context that would not only assist people to avoid suffering and death when this is possible, but would also help people find meaning and value even when suffering and death cannot be avoided. To do so, a more holistic approach to health care is needed, one that integrates the natural and human sciences in the care of patients. Fourth, the spiritual and religious considerations that were discussed affirmed the transcendent nature of humanity and provided the most expansive horizon for discerning the use of genetic technologies. Traditionally, Catholics and other Christians have held that every human being is created in the image and likeness of God, and that God became human in Jesus Christ. These views establish a range of duties and responsibilities that are relevant to genetic technologies. They set limits to possible applications of these technologies and preclude applications that would be at odds with respect for the dignity of all human beings. This horizon also challenges us with the responsibility to view and treat those members of the human family with genetic disorders, regardless of their stage in life, with the care and respect that is the due of all who are created in the image and likeness of God. In summary, I began with the image of a horse racing blindly across a field while pulling a man in a wagon, and used it as an analogy for the rapid developments in the science of genetics. The question this image raises is ‘Where is genetic science going in such a hurry?’ or ‘What is the goal of genetic science?’ In Science, Truth and Democracy, Philip Kitcher speaks about the need to articulate such a goal for science. This would involve answering the basic philosophical question, ‘What is the collective good that science should be trying to promote?’ Kitcher proposes that such a question cannot be answered by citizens voting, or by the decision making of scientists, policy makers, or government leaders. Rather, the collective good would best be defined by what he calls an ‘ideal discussion’ among different parties, based on some philosophical foundation and informed by the possibilities of science and the needs and interests of society.16 This is precisely the type of discussion that this volume has sought to promote. Such discussions are necessary if we are to avert the threats of

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scientific possibilities being blindly undertaken without due consideration of their moral implications or whether they are at the service of genuine human flourishing. It is important that we be aware of both the value and limits of genetic technologies. As a society, if we are to direct the course and goals of genetic science, a genuine dialogue among the relevant disciplines needs to be fostered from a philosophical foundation. As was demonstrated in the volume, the involvement of philosophy in such a dialogue can expand the horizon for moral discernment in these disciplines.

NOTES 1 On the difference between empirical and pre-empirical components in a claim or a stance, see the discussion in Michael Vertin’s introduction to this volume, ‘Employing Functional Specialization: Overview of a Group Experiment,’ and especially note 3. 2 Cynthia Crysdale, ‘The Character of Moral Value, Moral Knowledge, and Moral Debate,’ chapter 5, 79–89. 3 Gordon Rixon, ‘Religion as the Dynamic Horizon of Moral Discernment,’ chapter 6, 93–104. 4 Albert Moraczewski, ‘Response.’ See above, 119. 5 Vertin, ‘Employing Functional Specialization,’ 5. 6 Joseph Boyle, ‘Genetics, Medicine and the Human Person: The Papal Theology,’ chapter 9, 134. 7 John Dool, ‘Discerning Catholic Positions on Particular Ethical Issues,’ chapter 7, 108–17. 8 Joseph Boyle, ‘Moral Aspects of Genetics,’ in The Human Body, ed. Monks of Solesmes (Boston: St. Paul Editions, 1960) 259. 9 Ibid. Pope John Paul II, ‘The Ethics of Genetic Manipulation,’ Origins 13/23 (17 November 1983) 386–9, at 388. 10 Vertin, ‘Employing Functional Specialization,’ 4. 11 Ibid. 12 Robert Spitzer, Healing the Culture: A Commonsense Philosophy of Happiness, Freedom and the Life Issues (San Francisco: Ignatius Press, 2000). 13 Daniel Sulmasy, ‘A Biopsychosocial-Spiritual Model for the Care of Patients at the End of Life,’ The Gerontologist 42/3 (2002) 26. 14 Alfred Tauber, ‘The Ethical Imperative of Holism in Medicine,’ in Promises and Limits of Reductionism in the Biomedical Sciences, ed. M.H.V. Van Regenmortel and David L. Hull (Hoboken, NJ: Wiley, 2002) 270.

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15 Bill Sullivan and John Heng, ‘Bias and the Genetic Counsellor: A Problem of Self Knowledge,’ Journal of Developmental Disabilities 2/1 (1993) 1–9. 16 See James Devitt, ‘Philosophy’s Kitcher Looks to Collective Good in Determining Scientific Research Priorities,’ book review available at: http:// www.columbia.edu/cu/news/02/03/philipKitcher.html

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Index

abortion, 41–2, 137, 144, 151–2, 166 absolutes, 90, 92 academic freedom, 62 access: control of, case study, 154; to digital technologies, 150; to genetic information, 22, 64–5 accomplishment, sense of, 171 Adam, Shelin, 40n13, 56n11 Adkisson, Richard V., 75n11 Adler, Reid G., 68n22 adoption, 139 aesthetics, 97 agnosticism, 105 Allen, Garland E., 23n5, 63, 69n29 Allore, Robert, 179 Alway, Dr Richard, vii Ambrose, Christine M., 56n12 Ambrozic, Cardinal Aloysius, Archbishop of Toronto, vii amniocentesis, 150 amniotic fluid cells, chromosomal analysis of, 48 Amos, Christopher I., 40n18 Andersen, Bogi, 70n35–70n36 Andershed, Birgitta, 162n16 Andrews, Lori B., 23n8, 35, 40n11– 40n12, 40n14, 40n17, 40n19–

40n20, 67n1, 70n40; Future Perfect, 35 animal biology: beneficial applications of genetics, 141 animals: different from humans, 158; genetically modified animals, 154; Harvard mouse, 157; patenting of, 129; transgenic, 18, 22, 60 applied science vs quest to know, 79, 89–90 Aquinas, St Thomas, 145, 148–9, 161n4, 162n9–162n10; Summa theologiae, 145; ‘Treatise on Man,’ 145 Arendt, Hannah, 161n3 Aristotle, 148, 162n8 Arnason, Einar, 70n35–70n36 Ashbury, Frederick D., 39n5 assertion, propositum, 127 assessment, deliberate, 97–8 atheism, 105 athletic performance, enhancing, 150 Augustine, St, 100, 104n18–104n23; The Confessions, 100–1 Austin, Lisa, 30, 39n1–39n2 authoritative approach to determining Catholic positions, 109–11

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authoritative teaching, legitimacy of, 115 autonomy: and genetics, 136, 144; genetic testing as threat to, 37; and medical care, 147–8, 152–3; moral, 84 (see also moral); of science, 93; of theologians, 115, 117n4 (see also theologians) Avard, Denise, 39n1 Baird, Patricia, 37, 40n23–40n24 Bannink, Erna C., 40n15 Barzel, Yorum, 75n7 Baum, Andrew, 40n9 Beecher, Henri K., 67n4 Behman, Philip, 162n16 Bell, John, 39n6 Bentley, David, 155, 163n22 Bentley, S.D., 23n6 bias: and decisions, 44; general, 86; and genetic counselling, 49; group, 86, 117n7; influence of, 95–6, 112; and perspective, 85–8, 91; transcending, 114, 118 bioethics: autonomy, 147, 153; and Cartesian dualism, 145; determining Catholic positions on, 110–11; method for collaborative research on, 174; multidisciplinary research in, 173–6; stances, 7, 9–10, 11n11. See also ethics bioinformatics, 19, 31 biotechnology: advocate of progressively conservative position on, 45; beneficiaries of investment, 164n32; birth of, 16; and Canadian government, 43, 153, 160, 164n32; foundation for industry, 18; impact of patents, 73, 156; investment in, 159–60; and medi-

cal professionals, 38; positions on, 45. See also technology birth control, 113, 118 Bishop of Rome, 110. See also Pope Bloch, Maurice, 40n13, 56n11 blood, human, as commodity, 60 body: affected by genes, 49; Church as one body, 116; as commodity, 60, 128–9; distinguished from a thing, 125–6; impact of technology on, 144–5; integrity, sense of, 58; relationship with soul, 136, 140–1, 145; rising again, 152; as sacred, 59, 66; teaching body of Church, 109 Bovenberg, Jasper A., 69n34 Boylan, Michael, 45, 47n20 Boyle, Joseph, 6, 167–8, 176n6, 176n8–176n9, 179 BRACAnalysis® test, 155 BRCA1 & BRCA2: case study, 52–3; genes, 123; overestimation of risk, 35 breast cancer: case study, 169–70; genes (see BRCA1 & BRCA2). breeding for limited social function, 140 Breg, W.R., 48 British Columbia, province of, 155 Brown, Barry F., 6, 132n1, 166, 169, 179 Brown, Kevin E., 45, 47n20 Burgess, Michael M., 64, 67n6, 69n31 Burke, Wiley, 40n21–40n22 Butler, Declan, 23n4 Bynum, William, 69n27 Cahill, Lisa Sowle, 70n43 Cameron, Cathy, 39n5 Canadian Bioethics Society, viii

Index Canadian Catholic Bioethics Institute, vii–viii, 3 Canadian Collaborative Study of Predictive Testing for HD, 51 Canadian government, 43, 153, 160, 164n32. See also government Caplan, Arthur L., 70n38 Cardinal, Geneviève, 69n33–69n34 Carlson, Elof, 22n1 carrier screening: definition of, 29; genetic testing for, 30; and life decisions, 51–2, 55; purpose of, 20; and reproductive planning, 25, 46n6, 149–53, 166 Carter, Ronald F., 57n13 case studies: access to treatment, 154; autonomy and medical care, 147– 8; BRCA1 & BRCA2, 52–3; breast cancer, 169–70; disease vs normal, 26; genetic determinism, 55; genetic discrimination, 54–5; genetic testing, 24; perfectionism, 150–1; reductionism, 147 casuistry: gene patenting, 128–30 catastrophic illness, decreased resistance to, 63 Catholic: belief as humanistic, 141; Canadian Catholic Bioethics Institute, 3; Catechism of the Catholic Church (CCC), 110, 119; college of bishops, 110; ethical issues, 108–16, 145; positions on ethics, 118–19; positivism, 110–12; teachings and genetic perfectionism, 151; theology, mainstream, 110 (See also theology) Catholic Health Association of Ontario, viii Caulfield, Timothy A., 67n9, 69n23– 69n24, 71n44

181

causality, 91 cell lines, ownership of, 59, 154, 157 Cerdenõ-Tarraga, A.M., 23n6 change, moral value as direction of, 79–81 Chater, K.F., 23n6 Childress, James F., 164n33 China, 16 Cho, Mildred K., 70n38 choice: birth control, 113, 118; case study, 147–9; consumer’s, 63–4; informed vs informed consent, 38; life, 32, 34; medical, 22, 152; moral, 79–84, 87, 166–7 chorionic villi sampling, 150–1 Christ, Jesus, 117, 119–20 Christian: anthropology of, 135–6; moral principles of, 90 (see also moral); positivism, 116n4; relationship to ultimate meaning, 106; tenets of, 107–8; world view, 134. See also Catholic Christie, Ronald J., 162n14 chromosomes, 48–9, 125 Church: community, broader, 112; doctrine of, 102, 110–11, 116n4; early, 117n5; as one body, 116; philosophical tradition of, 146; teaching body of, 109; teachings of, 108, 113–14, 119, 134, 157, 168; traditional position on marriage, 158 civil libertarians, 84, 166–7 Clifford, Catherine, 104n12 clinical genetics: applications of research, 28–39; decision-making in, 38, 169–70; Pius XII on, 134; public trust in practitioners, 62–3; traditional process of geneticist, 18, 49–50; unique perspective of, 17 cloning, 18, 71, 156, 159

182

Index

cognitional theory, 89, 94 collective good, to determine direction of science, 175 Collins, Francis, 23n9 colon cancer, MSH2 gene mutation, 24 colour blindness gene, discovery of, 48 commercial contracts, 60 commercializing life, 58–9 Commission on the Future of Health Care in Canada, 159 commodification of human gametes and embryos, 158 community: discernment process of, 111; of faith, 94, 111–12, 116; human, 21–2; integrity of, 71; of investigators, 6, 10; and judgments, 5, 54, 167–8; need for, 45, 146–9; of shared meanings, 96; sharing of information with, 163n21; war vs, 161 compound patent protections, 129 compulsory licensing, 74, 157 conception: decision to avoid, 42; right to life from point of, 138. See also carrier screening Conner, James Michael, 56n2, 56n7 conscience: freedom of, 111, 117n5; and individual actions, 119, 168; role of, 109–15, 117–19, 120n1, 167 consensus of the faithful, 112–13 consent, 38, 51, 64–5, 71, 144 conservational value, 127 consumer right to choose, 79 context, factor in arriving at norms, 90 contraception, 118, 137 contraceptive sterilization, Catholic position on, 118

contract theory of intellectual property, 125 conversion, 99–103, 114–15, 118–19, 167–8; psychic, 99–100, 102–3; religious, 99–103, 114–15, 118, 167–8; three-fold, 118–19; transformative, 102. See also moral conversion Cook-Deegan, Robert Mullan, 67n11 Copley, Tobin T., 56n11 Coulehan, Jack, 69n28 counselling, genetic: counsellors, 174; Down Syndrome, 41; increased demand for, 22; need for, 20; need to include family and partners, 34; non-directive, 151; as non-directive, 49–50, 151; process of, 35–6 court, to review patents, 157 Cox, Susan M., 41n28 creation, goodness of, 99 creative tension, preservation of, 98 Creator, love for, 99. See also God Crick, Francis H.C., 18, 48, 56n4, 126, 165 critical evaluation, 97–9 Crysdale, Cynthia, 89–92, 97, 166–7, 170, 176n2, 179 cultural: backdrop, and psychological difficulties, 38; conditions for progress or decline, 166; controls, 97; goods, 171 culture of choice, 79 Curie, Marie, 129 Curie, Pierre, 129 cystic fibrosis, 151 Darwin, Charles: work on heritable traits, 15; The Origin of Species, 15 Daschle, Tom, 69n33 databanks, genetic, 64–5, 70n34, 70n37, 71

Index debriefing discussions, 8 deception, to obtain genetic knowledge, 144 Declaration on Euthanasia, 119 DeCode Genetics, 64 Decter, Michael B., 41n27 de Neeve, Eileen, 180 Denzingertheologie, 116n4 deontology, 81, 84, 97, 138, 166; Kantian, 66 deoxyribonucleic acid (DNA). See DNA Deschenes, Mylène, 69n33–69n34 determinism, 16, 37, 55, 144–6, 148– 9; of materialist philosophers, 148 Devitt, James, 177n16 dextrocardia, 26 diagnosis, 147, 157, 169 Diamond v. Chakrabaty, 60, 129. See also legal Dickens, Bernard M., 41n25–41n26 difference between animals and humans, 158 differences, types of, 86–7 digital divide, 150 dignity: human, 140, 145, 158, 175; intrinsic, 128, 130–1 disability, 166 disabled, unique talents of, 150 disciplines, integration of all, 98 discrimination, 36–7, 43, 54, 152, 154; need for laws against, 20; racial genetic, 54 disease: genetic component to, 17, 30; non-genetic causes of, 53; vs normal, 26; no treatment for, 174; reductionist view of, 37; social determinants to, 160; surveillance, 25, 53; use of genetic tests in diagnosis, 20

183

disenfranchisement, 152 DNA: discovery of, 165; microarray technologies, 19; recombinant DNA technology, 159; structure, description of, 48; studies of physical and chemical properties, 18; technology, potential for abuse, 23 doctrine: of Church, 110–11; comprehension of, 102; doctrinal theology, 98 (see also theology); of genetic determinism, 149; Lonergan, Bernard on, 114, 116n4 Donchin, Anne, 162n15 Donum vitae, 119 Dool, John, 106–7, 107n2, 167–8, 171, 176n7, 179 Doran, Robert M., 99–100, 103n4, 104n8–104n9, 104n16 Down Syndrome: diagnosis of, 21; discovery of, 48; frequency of, 20; prenatal testing for, 149–51; screening for, 41–2 Dozy, Andrée M., 56n8 Drucker, Harvey, 68n20, 68n22 drugs, development of new, 143 dualism, Cartesian, 145 Duchenne muscular dystrophy, 21 DudokdeWit, A.C., 40n10 Dufrasne, Suzanne, 56n11 Duivinvoorden, Hugo J., 40n10, 40n15, 40n18 Dulles, Avery, 116n3, 117n6 duodenal atresia, 149 Duyao, Mabel P., 56n12 ecological extingencies, 97 economic costs, of patent race, 73, 75n7 economic efficiency, of patents, 74 Edelstein, Wolfgang, 70n35

184

Index

education decisions, 25 egg donation, 158 ego, 171 Eisenburg, Rebecca S., 68n15, 68n18–68n19, 68n22, 75n8, 75n10 Elbashir, Sayda M., 23n7 Ells, Carolyn, 162n15 Emanuel, Ezekiel J., 70n39 embodied: perception, 97–8; sensibility, 101; spirit, 145; subject, 96; yearner, 167–8 embryo, 144, 158, 163n23, 175 employment: decisions, 25; determined by genes, 20; discrimination in, 43, 54, 154–5 (see also discrimination) end-of-life care, 153 environment, 17, 55, 159–60 epidemics, crossing species barriers, 22 equality, 150 erythropoietin, 150 eschatological perspective, 102 Estonia, 64 ethics: autonomy, 147, 153; bioethical stances, 7, 11n11; Catholic positions on, 108–16, 118–19, 145; conduct in research, 64–7, 71–3, 143– 4, 166–74; of control, 80, 87–8; and conversion, 102–3; and genetics, 36–9, 41–5, 50–6, 137–8, 144, 165– 71; and Guelph conference, 3, 6– 10; medical, 138; multidisciplinary research in, 173–6; of risk, 82; and self-deceit, 131; situational, 81 ethnic: genetic discrimination, 54 (see also discrimination); minority groups, 39 eugenics: attitudes, 26; in Commission on the Future of Health Care

in Canada, 159; fundamental tendency of, 136; in history, 144; individual choice in, 63; policies, 15– 16; Pope John Paul II, 139–40; relation to prenatal genetic testing, 37– 8 Evans, James P., 40n21–40n22 faith, 102, 105–6 false results, 31 family: history, 20, 49–50, 169–70; planning, 25, 46n6, 149–53, 166; relationships and genetic testing, 24, 32–5; and research, 17; values of, 172 Farrell, David Blake, 179 Fast, Dale, 161n5 Feasby, Colin, 67n9, 69n23–69n24, 71n44 federal government: commitment to development of biotechnology, 153; investment in biotechnology, 160. See also government Federal Transfer Policy Act, 62 feminist thought, 148 Ferguson-Smith, Malcolm Andrew, 56n2, 56n7 fetal ultrasonography, 50 Fiedler, Leslie A., 46n1 field specialization, 3 Fisher, Rory, 6 Flaman, Paul, 142n20 Flemming, Walther, 48 Fletcher, Joseph, 42, 46n7 Foot, Philippa, 133n13 for-profit mentality, 62 foundations, 94, 99, 114 Frankenstein, 158. See also Mary Shelley fraud, 144 free choice, none, 148

Index free will, 55, 113, 148–9 Friedman, Andrea L., 40n9 Fukuyama, Francis, 45, 47n19, 47n22 functional specialization, ix, 3–8, 99, 173–6 functional specialties, 12n12, 12n14 Galbraith, J.K., 45 Gallagher, John C., 107n1; ‘A Philosophy of Religion,’ 105 Gallini, Nancy T., 74n1–74n2 gametes, ownership of, 154 GATTACA (film), 144, 150, 152 Gautier, Marthe, 56n6 generalizations, 90; and moral principles, 81–2 (see also moral) genes: colour blindness, discovery of, 48; as data, 126, 129–30; and disease states, 17; equivalent to body parts, 128–9; -expression profiles, analysis of, 19; gene pool, human, 158; mapping and sequencing, 159; no independent existence, 126; not renewable resource, 129; overview of structure, 49; patenting (see patents); therapy, 18; to enhance human capacities, 149– 50; what it is, 125–6 genetic: code, as source of social benefit, 123; counselling (see counselling, genetic); determinism (see determinism); discrimination (see discrimination); diseases, 31–2, 49– 50; divide, 150; duty to avoid harm, 150; engineering, techniques of, 18; history, common, 22; information, medical use of, 21–2; intervention, 140, 166–7; knowledge, 34, 143; manipulation, 137, 139– 41, 144; markers, associated with

185

disease, 30; material, group specific, 65; medicine, language of, 50; patents (see patents); property rights, 58; reductionism (see reductionism); research (see research); risk, 168, 174; status, patient as, 147; store, changing the, 139–40; surgery, 139–40. See also counselling, genetic; databanks, genetic; genetic testing genetically: modified animals, 154; modified humans, 157 geneticization: of health care and medical research, 165. See also reductionism genetics: classic human, 17–18; clinical (see clinical genetics); definition of, 28; vs environment, 148; historical debate in field, 15; modern era of, 165; as paradigm-setting science, 16; structures, populations with uniform, 63; studies, population, 143–4 genetic screening: distinction from genetic testing, 28; ethical issues, 36–9; influence on human procreation, 41; psychological effects, 32– 5; in public health care system, 157; types of, 29. See also carrier screening genetic testing: advances in, 50–1; case study, 24; dangers of, 52–3; and depression, 32–3; diagnostic, definition of, 30; distinction from genetic screening, 28; and distress, 32; ethical issues, 36–9; impact on health services delivery, 31; impact on planning, 25; increased demand for, 22; increasing availability, 20; life choices, 34; linkage

186

Index

technique, 51; and need for support, 34; negative consequences of, 25; of newborns, 29; psychological effects, 32–5; and survivor’s guilt, 33 threat to autonomy, 37; types of, 29– 30. See also carrier screening Genizon Biosciences, 161n1 genome: natural history of organism, 127; sequencing projects, 19. See also human genome germ-line therapy, 139–40, 142n20 Gibbons, Susan M.C., 70n37 Gill, Mike, 40n8 Gitz, Ellen R., 40n18 Glass, Kathleen Cranley, 67n8, 69n32, 70n42 GlaxoSmithKline, 161n2 God: faith in and love of, 106; falling in love with, 102; handicap, as will of, 149; love of, 115; person in image and likeness of, 145–6, 148, 150, 158, 175; united with in prayer, 101 Gold, E. Richard, 68n15, 70n43 Goldsand, Gary, 70n39 good: collective, to determine direction of science, 175; of earth, to be shared, 157; of genes, 127–8; goodness of creation, 99; knowledge, as basic human, 143; Bernard Lonergan on, 81; moral, 166; of order, 87, 167; particular, 83–5, 166–7, 170; terminal, 163n23; threefold structure of, 83; vital, 171–2; of world process, 102 government: agreements with private sector, 64–5; and biotechnology, 164n32; commitment to development of biotechnology, 153;

genetic databanks established by, 71; limits, 162n17; municipal, investment in biotechnology, 159– 60; neglect of social obligations, 72; problematic involvement in research, 66; provincial, commitment to development of biotechnology, 153; provincial, investment in biotechnology, 159–60; regulation, influence on technology use, 43 Grant, George Parkin, 45, 47n21 Gray, John, 45 group consent, for use of genetic material, 65 Guelph, Ontario, ix Guelph conference, 2002, 6–10; methodological clarifications, 8– 10; stages of, 7–8 Haboth, Jens, 23n7 handicap, as God’s will, 149 handicapped: acceptance of, 152; developmentally, 151 happiness, 171–2 Häring, Bernhard, 163n27 Harnett, Christopher J., 68n22 Harvard mouse, 157 Hayden, Michael R., 56n11 Hayek, Friedrich, 44 health: Catholic Health Association of Ontario, viii; Commission on the Future of Health Care in Canada, 159; field concept, components of, 159; holistic approach to, 172; insurance, 20, 155 health care: Canadian system, 155; costs, 59; geneticization of, 165; impact of genetic testing on, 31; impact of Human Genome Project,

Index 48; professionals as protectors of public interest, 44; public, 157; system, funding of, 159 healthy, social interests of, 138 Hegel, G.W.F., 132n3 Hegel’s theory of property, 124, 129 Heller, Michael A., 68n15, 68n18– 68n19, 75n8 Helman, Cecil, 69n28 Heng, John, 6, 177n15 heredity, 15–16, 28, 48 Hirtle, Marie, 67n8, 69n32, 70n42 historical change, 111 history, tragic incidents of, 97 Hoffmaster, C. Barry, 162n14 horizon, perspective of one’s own, 86 Horton, Brenden, 68n21 Howard, Ken, 39n7 Hudson, Kathy L., 23n8 Huggins, Marlene, 40n13, 57n13 human: aspirations to infinite, 97; biology, 159; capacities, enhancing, 149–50; condition, improving the, 139; difference from animals, 158; dignity, 140 (see also dignity); fundamental equality of all, 145; gene pool, 158; genome, 16, 155, 157 (see also genome); imperfections, 63; liberty, biological basis of, 140; person (see person); procreation, influence on, 41; rights, 138; solidarity, 144; spirit, 145; tissue, as commodity, 60; unrestricted desire to know, 167 Human Genome Diversity Project, 65 Human Genome Project (HGP): benefit of, 28; impact of, 18, 48; increase in testing, 151, 154; proprietary rights issues, 16; public domain, 153; questions about, 145

187

Huntington’s disease, 149; case study, 55; diagnosis of, 21; non-ambiguous results of testing, 52; presymptomatic testing, 31–2; psychological effects of genetic testing, 33; testing in Canada, 51 Hurst, Lynda, 163n20 Huxley, Julian, 23n3 Ibbott, Peter, 179 Iceland, 64 identity, altered as result of genetic testing, 33–4 illness, 63, 160, 166 illuminative prayer, 98 imperfections: as unacceptable, 149; elimination of, 152; human, 63 improving the human condition, 139 inclusive value, 128, 130 independence, 171 indigenous peoples, vulnerable to exploitation, 65, 71 individual: choice in eugenics, 63; right to choose, 79; right to profit, 65; as sole decision-maker for technology use, 44; value, 128, 130 infectious diseases, treatment of, 23 infertile couples, 139 inheritance patterns for diseases, 17 insurance, 20, 154; health, national, 155 intellectual: conversion, 99–100, 102– 3, 114–15, 118, 167–8 (see also conversion); conviction, 101; functioning, patient as, 147; property, 16, 74n1, 74n5, 124 (see also property) interdisciplinary research, 135 interior awareness, 97 international agreements, 156 intersubjectivity, 96

188

Index

investigative process, 173 isolated knower, the, 80 Jackson-Thorne, Jo-Anne, 6 Jaffe, Adam B., 74n1, 74n4, 75n8– 75n9 Jamieson, Christine E., 179 Jeffords, James, 69n33 Jensen, Richard, 74n3 John 1:14, 117 John Paul II, Pope: address on genetic manipulation, 137–41; on Catechism of the Catholic Church (CCC), 119–20; referenced, 120n2, 141n2, 142n13–142n19, 142n21, 176n9 judgments, process of reaching, 4–5, 169 Kan, Yuet Wai, 48, 56n8 Kant, Immanuel, 148, 162n7 Kass, Leon R., 42, 45, 46n4, 46n18 Kaye, Jane, 70n37 Kevles, Daniel J., 22n1 Kitcher, Philip, 175; Science, Truth and Democracy, 175 Kluge, Eike-Henner W., 42, 46n3 Knoppers, Bartha Maria, 39n1, 67n8, 69n32–69n34, 70n42 knowing, 99, 169 knowledge, as basic human good, 143 Knudtson, Peter, 22n1 Kotalik, Jaro, 180 Kyoto Accord, 160 Lalonde, Marc, 164n31 Lalonde Report, 159 Lamb, Matthew, 104n17 language: barriers, 39; genes as, 52,

127; of genetic determinism, 16; of genetic medicine, 50; of multidisciplinary research, 135; popular, we are genes, 146; of war, 161 Laver, Graeme, 69n25 law: change in Canadian abortion law, 152; physical laws of nature, 148. See also legal legal: action, protections from, 156; change in Canadian abortion law, 152; Diamond v. Chakrabaty, 60, 129; disputes, 123, 132n1, 155; Madey v. Duke University, 68n15; Ontario BRCA 1 & 2 case, 129; theories of property, 124–5 legislation: reforms to patent law, 72– 3. See also legal Lejeune, Jérôme Jean, 48, 56n6 Lemmens, Trudo, 30, 39n1–39n2 Lendeckel, Winfried, 23n7 Levan, Albert, 48, 56n5 Lewy, Guenter, 161n3 liability protection, 156 libertarian: civil, 84; on genetic advantage, 65–6; moral stance, 97, 166; position on technology advances, 44; rights of individual, 148 liberty, biological basis of, 140 life: choices and genetic testing, 32, 34; commercializing, 58–9; eternal, 152; forms, ownership of, 154; forms, patenting of, 60; insurance, 20, 154–5; origins of, 140 lifestyle, 159 Linden, Mary G., 23n10 Locke, John, 132n2; theory of property, 124, 129 logos, 108, 117 Lonergan, Bernard: achievement of

Index common meaning, 116; on bias, 86, 91; cognitional theory, 89, 94; conversion, 99; cultivated patterns of experience, 95; desire to know, 94–5; discovery empowered by conversion, 115; on doctrines, 114; foundations, 94, 99; functional specialization, ix, 3, 99; good is always concrete, 81; Insight, 94; his intellectual project, 93; insights from, 109, 117; on knowing, 11n4; Method in Theology, ix; mysticism, 102; on normativity of truth, 115; particular goods and good of order, 83; referenced, 10n1, 11n5–11n7, 103n2– 103n7, 104n9–104n11, 104n13– 104n15, 116n1–116n2, 116n4, 117n7, 117n9–117n11, 132n5– 132n9, 164n34–164n35; schemes of recurrence, 80; on specialization, 10n2; terms used by, 10n3; things, bodies and conjugates, 125–6; three-fold conversion, 118–19; ‘virtually unconditioned,’ 90; ‘virtually unconditioned judgment,’ 92; work likened to Ignatian repetitions, 103n1; work likened to musical variations, 94, 100 love: of God, 102, 106, 115; unconditioned, 101 MacDonald, Chris, 162n15 MacDonald, Marci E., 56n12 Madey v. Duke University, 68n15. See also legal magisterium, 109–16, 117n8, 117–20, 167–8 Magus, David, 70n38 Manichean concept of universe, 100 markers, genetic, 30

189

market forces, 72 marriage: defense of, 137, 168; prevention of, 137; received teachings on, 141; right to, 137; spiritual union of, 140; traditional position of Church, 158 Maschke, Karen J., 70n37 Masood, Ehsan, 68n21 Mayrand, Albert, 67n5 Mazzoleni, Roberto, 75n6 McCormack, Stephen J., 67n11 McGee, Glenn, 44, 46n11 McKellin, William, 41n28, 56n11 McKibben, Bill, 45, 46n15 McQueen, Moira, 153, 180 meaning, 105–6; ultimate, 171 medicine: holistic in orientation, 172–3; increasing specialization in, 138, 168; for relief of suffering, 141; respect for concept of, 138; serving sick, 138 medieval period, 112 Melchin, Kenneth R., 79, 80, 89n1– 89n2; Living with Other People, 79 Mendel, Gregor, 15, 48, 56n1, 126 Merz, Jon F., 70n38 methods of medical treatment exclusion, Patent Act, 156 mice, patenting of, 129 Micklos, David, 22n1 Mill, John Stuart, 131, 133n17 modern sanitation, 160 Mokyr, Joel, 68n14 monopoly of manufacturer of test procedures, 154 Moorehead, P.S.: chromosomal analysis of blood, 48 Moraczewski, Albert, 167, 176n4, 180 moral: action, 91; analysis, questions

190

Index

to consider, 88; choices, 90; compass of society, 85; conversion, 99– 103, 114–15, 118, 167–8 (see also conversion); debates, having no resolution, 87; decision making, 113; knowledge, 80; philosophies, 84; principles and generalizations, 81–2, 90; questions, contemporary, 109; stances, 97; theology, 98, 111 (see also theology); transformation, 101; value, 89; value, character of, 166; value as direction of change, 79; values of Catholic tradition, 108 morality: traditional, 137; contemporary, and collective self-deceit, 131 MSH2 gene mutation, 24 Müllbacher, Arno, 69n25 Murashige, Kate H., 68n22 Murray, John Courtney, 117n5 Murray, Thomas H., 43, 46n8 Myers, Richard H., 56n12 Myriad Genetics Inc., 132n1, 155, 157 mysteries, interconnection of, 102 mystic, the, 96 mystical union, 101 National Fragile X Foundation, The, 161n5 nature vs nurture, 148 Nazi regime, racist extremes of, 15 negatives, false, 31 Nelkin, Dorothy, 67n1, 70n40 Nelson, Richard R., 75n6 nematode models, 155 New Reproductive Technologies, Royal Commission on, 158 Niermeijer, Martinus F., 40n18 non-therapeutic intervention, 139–40 normal, society’s understanding of, 37

normative value, 127 Normile, Denis, 23n4 noticing, acts of, 95, 97–9 November 2001 conference, ix–x Nozick, Robert, 63, 66–7, 69n30, 70n41 Obadia, Alexandra, 69n33–69n34 objectivity, genuine, 5 obstetrics, 149 Ontario, province of, 123, 132n1, 155, 160 Ontario BRCA 1 & 2 legal case, 129. See also legal organs, human, as commodities, 60 organ transplantation, provincial laws on, 157. See also legal ownership: of genes, akin to slavery, 123–4, 128; of genetic material, 154; of human beings, 158–9 oysters, patenting of, 129 Pääbo, Svante, 67n7 paclitaxel, 129–30 Paganini, Niccolò, 94 palliative care, 160 papal teaching, 134 particular goods, 83–5, 87, 166–7, 170 Patent Act, review of, 156–7 patenting: casuistry for, 128–30 patents: discouraging effect of database creation, 66; economics of, 74; of genetically engineered organisms, 129–30; for genetically modified humans, 157; of genetic information and techniques, 153; human genes, 123, 131, 155; on human genetic material, 60–1; law, 71, 156–7; for methods, 129, 132; for natural substances, 129–31;

Index need to modify system, 155–6; for new life form, 163n19; and ownership, 125, 158; patent race, economics of, 73, 75n7; of pharmacological information, 157; reforms to law, 72–3; and research, 62 patient: autonomy, 147; confidentiality, hospital policies on, 152 pediatrics, 149 Pellegrino, Edmund, 69n26, 71n45 People’s Republic of China, 16 perception, 97–100 perfectionism, 149–53 person: breeding for types of, 140; dignity of, 158 (see also dignity); embryo as, 158; in image and likeness of God, 145–6, 148, 150, 158, 175; nature of, 145; ontological unity of, 136; unacceptable, 149; unity of, 168; viewed as genetic composite, 55 perspective, 85–6, 88, 91 Peters, Tom, 44 Peterson, Susan K., 40n18 pharmaceutical companies, 143 pharmacogenetics, 143 pharmacogenomics, 19 philosophy: ancient, 148; Cartesian, 80; medieval, 148; political, 84 physical laws of nature, 148 Pius XII, Pope: address on genetics, 134–7; on human genome, 59; referenced, 141n1, 141n3–141n7, 141n9–141n12, 168 Pontifical Institute for Life, 142n20 poor, treatment accessibility for, 74 Pope: role of in discerning Catholic positions, 110. See also John Paul II; Pius XII

191

Popper, Karl, 44 Porter, Roy, 69n27 positives, false, 31 positivism, 110–12, 116n4, 125 Post, Stephen G., 42, 46n2, 162n12 Postman, Neil, 45, 46n13 Postrel, Virginia, 44–5, 46n12, 46n17 prayer, 97–8, 101 prediction, language of genetic medicine, 50 predictive genetic testing for susceptibility, 143 predictive testing, issues in, 154 predisposition, language of genetic medicine, 50 predispositions to illness, as unacceptable, 149 pre-empirical components of situation, the, 4 pregnancy, as tentative condition, 41– 2 prenatal: diagnosis, definition of, 29; screening, 149, 166; testing, troublesome aspects of, 151 presymptomatic screening, 29 presymptomatic testing, 30 pre-test counselling, 35–6 primary care physician, role in informing and advising patients, 38 privacy, of human genetic information, 130–1 private: industry and links to public institutions, 62–3, 72–3; insurance carriers, 155; sector, government agreements with, 64–5 procreative liberty, 43 Proctor, Robert, 23n2 profit, individual right to, 65 progressively conservative position on technology, 44–5

192

Index

property: intellectual, 16, 74n1, 74n5; rights, 58, 65, 153; theories of, 124– 5, 129 propositional value, 127 propositum, 127 proteins, overview of structure, 49 proteomics, definition of, 19 psychological impact of diagnosis, 147 psychological status, of patient, 147 public: domain, 153; funding of genetic technologies, 160; health care system, 155, 157; institutions, links to private industry, 62–3, 72– 3; morality provision, Patent Act, 156; policy and mutual co-operation, 83; trust in scientists and clinical practitioners, 62–3 Quaid, Kimberly A., 40n16 Quebec: province of, 64, 143; founder population of, 143 quest to know vs applied science, 79, 89–90 Rachmaninoff, Sergei, 94 racism, 140 radical equality, 150 radical libertarians, 148 radium, discovery of not patented, 129 Rahner, Karl, 116n4 real, the, 100 recombinant DNA technology, 159 reductionism, 52–3, 128, 144–8, 165– 66, 168–9, 172–4; warnings against, 135 relativism, prevailing cultural assumption of, 85 religion: in contemporary context,

106; integral part of human quest for meaning, 105; role and significance in contemporary context, 98; role and significance of, 93; role in moral discernment, 105; tradition, as mediator of truth, 102 Relman, A.S., 69n26 reproductive planning. See family research: academic, 62–3; on bioethics, collaborative method for, 174; directed towards profitability, 62; fetal, 144; interdisciplinary, 135; medical, geneticization of, 165; multidisciplinary, 135; pace of, effect of patents on, 73 research, genetic: allocation of funds, 64; benefits of, 143; commercialization of, 59–60, 65, 153–6; constraints on due to patents, 61; determining limits to, 144–5; embryonic stem-cell, 144; focus on single gene disorders, 30; government, problematic involvement of, 66; historical context, 48; influence on intellectual property, 16; objections to, 59–60; patents hampering, 155; role in health, 159 researchers: influence on technology use, 43–4; secrecy of, 60 resurrection, the, 152 retirement planning, 25 revelation, truth of, 102 ribonucleic acid (RNA), 18 Richards, Tessa, 40n8 Rifkin, Jeremy, 45, 46n14, 46n16 right to life from conception, 138 risk, overestimation of in families with genetic diseases, 34–5 Rist, John M., 131, 133n18 Rixon, Gordon, 167, 171, 176n3, 180

Index Robinson, Arthur, 23n10 Rolston, Holmes, 127, 130, 132n10, 133n11–133n12, 133n14, 133n16 Romanow, Roy J., 159, 163n28, 164n29–164n30 Romans 5:5, 114 Rothenberg, Karen H., 23n8 Roy, David J., 41n25–41n26 sanctity: of body’s elements, 66; of life, 66, 71, 141, 146 Sanger Institute, 155 Sawa, Russell J., 132n1, 161n6, 162n16, 169, 180 schemes of recurrence, 80 Scherer, Stephen, 39n4 scholars, study same realities, 135 science: autonomy of, 93; inhibiting progress of, 123; integrity of, 71; scientific literacy, 174; scientist, the, 95–6 screening tests: case study of, 169–70 scripture, 109, 119, 167 Scriver, Charles R., 39n3 Second Vatican Council, documents of, 119 self-determinism, 55 self-image, altered as result of genetic testing, 33 Sharpe, Neil F., 57n13 Shelley, Mary, 158. See also Frankenstein Shumacher, E.F., 45 sick, interests of, 138 Silver, Lee M., 44, 46n10 Skrzynia, Cecile, 40n21–40n22 slavery, owning genes akin to, 124, 128 social: commitment to community of peers, 98; determinants to disease,

193

160; goods, 171; intersubjectivity, 97; intolerance, 151; justice, 144, 157 societal trends, 152, 166 somatic cell therapy, genetic, 143 soul, 136, 145–6, 148, 152 Soviet Union, 16 specialization, inevitability of, 138 Special Olympics, 151 species barriers, diseases crossing, 22 sperm donation, 158 spina bifida, 149 Spirit, the, 106. See also God spiritual: impact of diagnosis, 147; nature of humanity, 145; space, 103; values of St Augustine, 100 Spitzer, Robert, 171, 176n12; Healing the Culture, 171 Spurgeon, David, 68n21 standards, need for, 45 Steel, M.W., 48 stem cells, 19, 144, 156, 163n23 sterility, handicap of, 139 sterilization, 137, 166 stigmatization, as result of genetic testing, 36–7. See also discrimination; reductionism Stokstad, Eric, 68n13 strict determinism, 148 subjectivity, authentic, 5 subject specialization, 3 suffering, as part of spiritual journey, 150 Sullivan, William F., vii, 6, 177n15, 180 Sulmasy, Daniel P., 172, 176n13, 180 Sulston, Sir John, 155, 157 Summers, Anne, 57n14–57n16, 169, 180 supermen, creation of, 139 supernatural destiny, 145–6

194

Index

susceptibility: language of genetic medicine, 50; screening, 29; testing, 30 Suzuki, David, 22n1 Sweden, 16 Tauber, Alfred, 172, 176n14 Tay-Sachs disease, diagnosis of, 21 technology: as abstraction, 89, 153; evaluation of, 164n32; ideological positions on advance of, 44–5; influence on people, 45; limits of, 153; transfer, stimulation of, 72–3; uncontrollable march of, 43. See also biotechnology terminal illness, 160 terminal values, 83, 87, 144–5, 166–7, 171–2 Ternestedt, Britt-Marie, 162n16 theologians, 109–10, 113–15, 117, 117n4, 119–20, 167 theology, ix, 98, 110–12, 145; faculties of, 112; speculative, 98 therapeutic intervention, 139 things, as focus of data, 125 Thompson, James Scott, 162n13 Thompson, Margaret W., 162n13 Thompson, Nicholas, 68n16 Thursby, Marie, 74n3 Tibben, Aad, 40n10, 40n15, 40n18 Tijo, Joe Hin, 48 Timman, Reinier, 40n15 tolerance, virtue of, 85 Toynbee, Arnold J., 104n24 trade secrets, 60 tradition, 98, 109 traits, not health related, 26 transgenic animals, 18, 22, 60 treatment, access to, 73–4, 84, 123, 160; equality of, 84

trisomy 18 & 21, 151 Turpin, Raymond, 56n6 tyranny of the normal, 42 unconditional worth, 146 understanding, 97–9 unity of person, 168 universe, as expression of Creator’s love, 101. See also God University of St Michael’s College, vii University of Toronto, vii unnecessary products, for public consumption, 63 U.S. patent legislation, reforms to, 72–3 utilitarian: concerns, 65–7; focus of, 166; moral stance, 84, 97; on stem cells, 163n23; theory of intellectual property, 124 value of genes, kinds of, 127–8 values: contextual nature of, 87; distinct, 167; scale of, 171–2 Vanier, Jean, 42, 46n5 vegetable biology, beneficial applications of genetics, 141 Vegter-van der Vlis, Maria, 40n18 Vernon, Sally W., 40n18 Vertin, Michael, 6, 167, 169, 173, 176n1, 176n5, 176n10–176n11, 180 Vesalius, 131 virtually unconditioned norms, 90–1 vital goods, 171–2 Walkerton, 160 Walsh, Leo, 180 Walters, Leroy, 164n33 war, language of, 161 Waring, Paul, 69n25 water control, 160

Index Watson, James, 18, 48, 126, 165 Watson, James D., 56n4 Weijer, Charles, 70n39 Weil, Simone, 162n11 well off, social interests of the, 138 Weschler, Cristina, 68n15 Wesson, Melissa K., 40n16 Whyte, Patti, 57n13 Wiggins, Sandi, 40n13, 56n11, 57n13 Williams, John R., 41n25–41n26 Wilson, E.B., 48, 56n3

195

withholding treatment, 149 wonder, 94–9, 103, 167 word, the, 108, 117 World Council of Indigenous People, 65 world process, 97, 102 Yahweh, prophets of, 119 Zakowski, Sandra G., 40n9

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Contributors

Robert Allore, SJ, PhD, MDiv, medical researcher at Mount Sinai Hospital and lecturer at Regis College at the University of Toronto. Joseph Boyle, PhD, professor, Department of Philosophy, fellow and former principal of St Michael’s College, University of Toronto. Barry F. Brown, PhD, member, Joint Centre for Bioethics, associate professor, retired, St. Michael’s College and Department of Philosophy, University of Toronto, and chair, Research Ethics Board, ethica Clinical Research Inc. Cynthia Crysdale, associate professor in the School of Theology and Religious Studies, The Catholic University of America in Washington, DC. John Dool, assistant professor of Systematic Theology at St Peter’s Seminary in London, Ontario. David Blake Farrell, BA, LLB, BCL, sessional lecturer at the Faculty of Law, McGill University, and director of the Thomas More Institute for Adult Education. Peter Ibbott, PhD, associate professor of Economics at King’s University College at the University of Western Ontario. Christine E. Jamieson, PhD, LTh, theologian and ethicist, associate professor and Graduate Program director, Department of Theological Studies, Concordia University, Montreal.

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Contributors

Jaro Kotalik, MD, MA, FRCPC, clinical professor in the Department of Medicine at McMaster University, professor, Northern Ontario School of Medicine, and director of the Centre for Health Care Ethics, Lakehead University. Moira McQueen, LLB, MDiv, PhD, professor, Faculty of Theology, University of St Michael’s College in Toronto, and director, Canadian Catholic Bioethics Institute Albert Moraczewski, OP, PhD, MA, STM, president emeritus of the National Catholic Bioethics Center in Philadelphia, Pennsylvania. Eileen de Neeve, PhD, former president of the Thomas More Institute for Adult Education, and member of its Research Institute. Gordon Rixon, SJ, PhD, dean, Regis College, University of Toronto. Russell J. Sawa, MD, PhD, CCFP, FCFP, BA, associate professor in the Department of Family Medicine at the University of Calgary. William F. Sullivan, MD, CCFP, PhD, founding director of the Canadian Catholic Bioethics Institute and the International Association of Catholic Bioethicists, assistant professor, Department of Family and Community Medicine, University of Toronto, and family physician, St Michael’s Hospital and Surrey Place Centre. Daniel P. Sulmasy, OFM, MD, PhD, Sisters of Charity Chair in Ethics and attending physician, St Vincent’s Hospital-Manhattan, New York, NY, professor of medicine and director, The Bioethics Institute of New York Medical College, Valhalla, NY. Anne Summers, MD, BSc, FRCP, FCCMG, chief and medical director of the Department of Genetics at North York General Hospital (NYGH) and director of the Maternal Multiple Market Screening Programme at NYGH. Michael Vertin, professor emeritus, Philosophy, Religion, and Theology, University of St Michael’s College, University of Toronto. Leo Walsh, CSB, associate professor emeritus, St Michael’s College, Faculty of Theology, and pastor/administrator of St Paul’s parish in LaSalle, Ontario.