Politics, Piety, and Biomedicine: The Malaysian Transplant Venture 9783839437025

Table of contents :
Cover. Politics, Piety, and Biomedicine
Table of Contents
List of Figures, List of Tables, List of web-based Appendices
List of Figures
List of Tables
List of web-based Appendices
Abbreviations
Glossary
Acknowledgements
Preliminary Remarks
Preface
Abstract / Zusammenfassung
1. Introduction
1.1 Objective of the Study
1.2 Ethnicity, Culture, and Religion
1.3 Medical Pluralism
1.4 Bioavailability of Organs
1.5 Anthropological Problems
1.6 Overview of Healthcare Research concerning the Attitude of Malaysians towards Organ Donation
1.7 Fieldwork
1.7.1 Qualitative in-depth Interviews with Medical and Religious Experts
1.7.2 Quantitative Survey among the Rural Malay and Chinese Communities
1.8 Structure of the Present Work
2. Politics, Piety, and Biomedicine
2.1 Political Background and Context
2.2 The Transplant Venture and the Media
2.3 From Sporadic Transplant Activity to the National Transplantation Programme
2.4 Laws, Government Policies, and Medical Guidelines Pertaining to Transplantation, Organ Donation and Brain Death
2.5 Promoting Organ Donation: From Grass-Root Initiatives to Large Scale Government Campaigning
2.6 Making the National Transplantation Programme a ‘Muslim-Friendly’ Enterprise
2.7 Normative Islamic Obligations: Their Generation and Content
2.7.1 Generating Federal Fatwas under the National Fatwa Committee
2.7.2 The Content of Federal Fatwas Concerning the Transplant Venture
2.7.3 Generating State Fatwas under the State Mufti Department
2.7.4 The Content of State Fatwas Concerning the Transplant Venture
2.7.5 IKIM, the Institute for Islamic Understanding and Their Viewpoint on Transplantation
2.8 Normative Obligation in Chinese Realms: The Generation and Content of Buddhist and Daoist Normative Obligations
3. Malaysian Lifeworlds, Medical Pluralism, and the Transplant of Organs
3.1 Malay Lifeworlds
3.2 Chinese Lifeworlds
3.3 End-stage Organ Failure between Traditional Medicine, Supernatural Healing, and Biomedicine
3.4 Local Perceptions on the Practice of Transplanting Organs
3.4.1 Experience with and Practices of Organ Donation and Transplantation
3.4.2 Knowledge about Organ Donation and Transplantation
3.4.3 Attitudes towards Transplant Practices
3.4.4 Attitudes towards Organ Donation
3.4.5 Local Perceptions on Increasing the Organ Donation Rate
3.4.6 Attitudes towards Certain Organs, the Body, and the Corpse
3.4.7 Religious Aspects on Organ Donation and Transplantation
3.4.8 The Role of the Family in Organ Donation
3.4.9 The Concept of Brain Death
4. Conclusion
Epilogue
References
Books, Book Chapters, and Journal Articles
Newspaper Articles
Statutes, Government Publications, and Publications from Medical Professional Bodies
Brief Biography
Web-based Appendices|

Citation preview

Jenny Schreiber Politics, Piety, and Biomedicine

Culture and Social Practice

Jenny Schreiber (Dr. med.) studied Cultures and Languages of Southeast Asia and Medicine in Hamburg and Sydney. Her research interests include ethical issues and decision-making processes in biomedicine. She is currently completing her specialist training in Neurosurgery.

Jenny Schreiber

Politics, Piety, and Biomedicine The Malaysian Transplant Venture

Bibliographic information published by the Deutsche Nationalbibliothek The Deutsche Nationalbibliothek lists this publication in the Deutsche Nationalbibliografie; detailed bibliographic data are available in the Internet at http://dnb.d-nb.de © 2017 transcript Verlag, Bielefeld

All rights reserved. No part of this book may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publisher. Cover concept: Kordula Röckenhaus, Bielefeld Typeset by Mark-Sebastian Schneider, Bielefeld Printed in Germany Print-ISBN 978-3-8376-3702-1 PDF-ISBN 978-3-8394-3702-5

dedicated to Lars, and Emma, Arthur, and Charlie

Table of Contents List of Figures, List of Tables, List of web-based Appendices  | 11 List of Figures | 11 List of Tables | 11 List of web-based Appendices | 12

Abbreviations  | 13 Glossary  | 17 Acknowledgements  | 21 Preliminary Remarks  | 25 Preface  | 27 Abstract / Zusammenfassung  | 33 1. Introduction  | 37 1.1 Objective of the Study | 42 1.2 Ethnicity, Culture, and Religion | 44 1.3 Medical Pluralism | 49 1.4 Bioavailability of Organs | 52 1.5 Anthropological Problems | 57 1.6 Overview of Healthcare Research concerning the Attitude of Malaysians towards Organ Donation | 63 1.7 Fieldwork | 68 1.7.1 Qualitative in-depth Interviews with Medical and Religious Experts | 72 1.7.2 Quantitative Survey among the Rural Malay and Chinese Communities | 81 1.8 Structure of the Present Work | 87

2. Politics, Piety, and Biomedicine  | 89 2.1 Political Background and Context | 91 2.2 The Transplant Venture and the Media | 104 2.3 From Sporadic Transplant Activity to the National Transplantation Programme | 111 2.4 Laws, Government Policies, and Medical Guidelines Pertaining to Transplantation, Organ Donation and Brain Death  | 128 2.5 Promoting Organ Donation: From Grass-Root Initiatives to Large Scale Government Campaigning | 134 2.6 Making the National Transplantation Programme a ‘Muslim-Friendly’ Enterprise | 142 2.7 Normative Islamic Obligations: Their Generation and Content | 153 2.7.1 Generating Federal Fatwas under the National Fatwa Committee | 155 2.7.2 The Content of Federal Fatwas Concerning the Transplant Venture | 158 2.7.3 Generating State Fatwas under the State Mufti Department | 160 2.7.4 The Content of State Fatwas Concerning the Transplant Venture | 164 2.7.5 IKIM, the Institute for Islamic Understanding and Their Viewpoint on Transplantation | 165 2.8 Normative Obligation in Chinese Realms: The Generation and Content of Buddhist and Daoist Normative Obligations | 169

3. Malaysian Lifeworlds, Medical Pluralism, and the Transplant of Organs  | 181 3.1 Malay Lifeworlds | 184 3.2 Chinese Lifeworlds | 191 3.3 End-stage Organ Failure between Traditional Medicine, Supernatural Healing, and Biomedicine | 205 3.4 Local Perceptions on the Practice of Transplanting Organs | 219 3.4.1 Experience with and Practices of Organ Donation and Transplantation | 224 3.4.2 Knowledge about Organ Donation and Transplantation | 226 3.4.3 Attitudes towards Transplant Practices | 229 3.4.4 Attitudes towards Organ Donation | 233 3.4.5 Local Perceptions on Increasing the Organ Donation Rate | 237 3.4.6 Attitudes towards Certain Organs, the Body, and the Corpse | 240 3.4.7 Religious Aspects on Organ Donation and Transplantation | 247 3.4.8 The Role of the Family in Organ Donation | 252 3.4.9 The Concept of Brain Death | 254

4. Conclusion  | 259 Epilogue  | 271 References  | 273 Books, Book Chapters, and Journal Articles | 273 Newspaper Articles | 285 Statutes, Government Publications, and Publications from Medical Professional Bodies | 289

Brief Biography  | 293 Web-based Appendices | 295

List of Figures, List of Tables, List of web-based Appendices

L ist of F igures Figure 1 Figure 2

Recruitment process of experts for guideline-orientated interviews Recruitment for the quantitative survey of rural Malay and Chinese Malaysians in Kuala Selangor

L ist of Tables Table 1

Transcription rules

Table 2

Socio-demographic characteristics of 18 interviewees

Table 3

Socio-demographic characteristics of the study population

Table 4

Experience with and practices on organ donation and transplantation presented according to ethnic belonging

Table 5

Knowledge about organ donation and transplantation presented according to ethnic belonging

Table 6

Attitudes towards transplant practices presented according to ethnic belonging

Table 7

Attitudes towards organ donation presented according to ethnic belonging

Table 8

Perceptions on increasing the organ donation rate presented according to ethnic belonging

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Politics, Piety, and Biomedicine

Table 9

Organs or tissues that would be donated after death presented according to ethnic belonging

Table 10

Most likely donated organs and reasons to donate presented according to ethnic belonging

Table 11

Organs that would never be donated and reasons not to donate presented according to ethnic belonging

Table 12

Role of religion and faith in everyday life presented according to religious affiliation

Table 13

Religious aspects on organ donation and transplantation presented according to religious affiliation

Table 14

The role of the family in organ donation presented according to ethnic belonging

Table 15

Knowledge and attitudes towards brain death presented according to ethnic belonging

Table 16

Religious aspects on brain death presented according to religious affiliation

L ist of web - based A ppendices Web-based appendices can be reviewed under http://www.transcript-verlag. de/978-3-8376-3702-1/. Appendix 1

Transcripts of Interviews

Appendix 2

Questionnaire Malay

Appendix 3

Questionnaire English

Abbreviations

ABIM

Angkatan Belia Islam Malaysia, the Malaysian Islamic Youth Movement; ABIM is part of the dakwah movement.

DAP

Democratic Action Party; the DAP is an opposition party that mainly consists of ethnic Chinese.

HIV

Human immunodeficiency virus.

IIUM

International Islamic University; IIUM was established in 1983.

IKIM

Institut Kefahaman Islam Malaysia, Institute of Islamic Understanding Malaysia; IKIM is a UMNOrelated think tank established in 1992.

JAKIM

Jabatan Kemajuan Islam Malaysia, Department for Islamic Development; JAKIM is a federal ministry located in Putrajaya and part of the Prime Minister’s office.

KLIA

Kuala Lumpur International Airport.

KPI

Key performance indicator; KPI’s were incorporated in the public healthcare system under the 1Malaysia campaign in 2009.

MCA

Malaysian Chinese Association; the MCA is the largest party representing the Chinese and forms together with UMNO the ruling National Front coalition.

MCCBCHS

Malaysian Consultative Council of Buddhism, Christianity, Hinduism, and Sikhism; established in 1983.

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Politics, Piety, and Biomedicine

MCCBCHST

Malaysian Consultative Council of Buddhism, Christianity, Hinduism, Sikhism, and Taoism; since 2006 the successor organisation of the MCCBCHS.

MOSS

Malaysian Organ Sharing System.

MUIS

Majlis Ugama Islam Singapura, the Islamic Religious Council of Singapore.

NEP

New Economic Policy; implemented in 1971.

NTRC

National Transplant Resource Centre, an agency under the Malaysian Ministry of Health.

OIC

Organisation of Islamic Conference.

PAS

Parti Islam Se-Malaysia, Pan-Malaysian Islamic Party; PAS is the major Malay Muslim opposition party.

PERKIM

Pertubuhan Kebajikan Islam Malaysia, the Malaysian Islamic Welfare and Missionary Association; PERKIM is part of the dakwah movement.

PMR

Penilaian Menengah Rendah; equivalent to the Lower Secondary Assessment in Great Britain.

SPM

Sijil Pelajaran Malaysia, the Malaysian Certificate of Education; equivalent to O-Level in Great Britain.

SPVM

Sijil Pelajaran Vokasional Malaysia, the Malaysian Vocational Certificate of Education.

STPM

Sijil Tinggi Persekolahan Malaysia, the Malaysian Higher School Certificate; equivalent to A-Level in Great Britain.

TOP team

Tissue and Organ Procurement team who facilitate donor coordination on site.

UMNO

United Malays National Organisation, Pertubuhan Kebangsaan Melayu Bersatu; UMNO is Malaysia’s largest political party with mainly ethnic Malays. It is the founder of the ruling National Front coalition.

UTAC

Unrelated Transplant Approval Committee; established in 2003.

Abbreviations

YBAM

Young Buddhist Association of Malaysia; established in 1970.

15

Glossary

adat

Adat presents with great regional differences in Malaysia and includes Malay customs, conventions, oral traditions, rituals, and symbols that exist at least partially from pre-Islamic times.

baishen (拜神)

Baishen means to worship god, spirits, deities, or supernatural beings.

Barisan National

Barisan National (the National Front coalition) is a right-wing political party consisting of the Malaysian Chinese Association, the Malaysian Indian Congress, and multiple further small parties. Until today it is the undisputed ruling party.

bodhisattva

An enlightened being that is able to reach nirvana.

bomoh

A traditional Malay healer who uses spiritual healing and religious power to intercede in medical or personal troubles.

bu shi (布施)

The Chinese equivalent to the term dana, generosity of selfless giving.

bumiputra

Bumiputra literally means ‘son of the soil’, and refers to ethnic Malays and indigenous people who are legally defined and accorded preferential treatment under the New Economic Policy.

ceramah

Islamic religious talk, usually delivered by religious leaders.

dakwah

Islamic revivalist movement; dakwah explores the dimensions of religious outreach or mission activity in the modern Islamic world.

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Politics, Piety, and Biomedicine

dana

Dana translates as generosity of selfless giving. In Buddhist teaching it is believed that giving without seeking anything in return leads to greater spiritual wealth.

Darul Arqam

Darul Arqam is part of the dakwah movement and also known under the name Al-Arqam or Dar AlArqam. The Malaysian government banned Darul Arqam in 1994.

darurah

The Islamic principle of darurah permits the forbidden under circumstances of necessity.

fatwa (pl. fatwas)

A fatwa is an Islamic legal opinion issued by a recognised Muslim authority. In Malaysia, federal and state departments issue fatwas and state fatwas are legally binding when gazetted and may be enforced with penalties.

hadith

Written compilation or narrative of Prophet Muhammad’s sayings and instructions. It is second to the Quran as a source of Islamic law and jurisprudence.

halal

Permissible by Islamic law.

haram

Forbidden by Islamic law.

hudud code

Hudud codes are imposed for so-called offences against God, such as theft, adultery, and apostasy and include for example the amputation of limbs.

ijtihad

Islamic principal of independent judgement or individual reasoning. The term describes the process of making an autonomous legal decision in case there is no previous recognised source.

imam

Prayer leader in a mosque or undisputed leader of an Islamic community.

kampung

Malay village.

khutbah

Sermon text for Friday prayer.

mufti

A Muslim scholar who can issue Islamic legal opinions, fatwas.

mustafti

A petitioner seeking information or an Islamic legal opinion from a mufti.

Glossary

nas

Nas is an authoritative quotation from the Quran or the hadith that settles a point of Islamic law or theology.

National Fatwa Committee

Short version of Fatwa Committee of the National Council for Islamic Affairs, Jawatankuasa Fatwa Majlis Kebangsaan Bagi Hal Ehwal Ugama Islam. The National Fatwa Council can issue non-binding fatwas on a federal level.

Nirvana

Nirvana is the final goal of Buddhists. A transcendental state in which there is neither suffering, desire, nor sense of self, and the human being is released from the cycle of death and rebirth.

nyawa

Soul or life in Malay realm.

penghulu

A headman or chief of a Malay village who gives religious advice, presides at weddings, manages mosque activities and sometimes serves as a judge.

qi (氣)

Refers to vital energy or life force in Traditional Chinese Medicine. Qi pervades all living organisms and is inherited from parents and acquired through food and air.

Quran

Divine and highest reference source of Islamic law.

roh

Spirit or the breath of life in Malay realm.

semangat

The spirit of the physical life or vitality in Malay realm.

sharia

Islamic Law.

shen (神)

Shen is the ‘spiritual other’ and refers to gods, celestial or ancestor spirits, deities, or supernatural beings.

sinseh

Traditional Chinese doctor.

spiritual healing

Spiritual healing or shamanism is considered the most ancient form of healing. In Malaysia, both the bomoh and the tiaotong perform spiritual healing and are regarded as having access to, and influence in, the world of good and evil spirits. Both spiritual healers typically enter a trance state during a ritual and practice divination and heal through retrieving errant souls.

19

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Politics, Piety, and Biomedicine

sunnah

Life-style and practices of Prophet Muhammad that are supposed to be followed by Muslims.

surau

Small site for prayer, often just a room, hut, or small hall.

tiaotong (跳童, Cantonese)

A spirit medium performing spiritual healing by being possessed by shen. When in trance, the tiaotong may cure physical or mental suffering and personal troubles through retrieving errant souls.

ulama

Muslim scholars knowledgeable in Islamic theology.

umma

The wider Muslim community.

ustaz

Religious teacher.

Acknowledgements

The present study was carried out at the Asia-Africa Institute at the University of Hamburg between 2009 and 2015. The fieldwork was conducted in Malaysia in September and October 2009, in May 2010, and in June 2014. As with other research projects, this dissertation came into existence because of the commitment and contributions of various scholars, to whom I would like to express my deepest gratitude. First, I would like to express my most heartfelt gratitude to my late Doktorvater Prof. Dr. Rainer Carle who supported me since my school days and encouraged me to connect medicine with Austronesian Studies. Without his trust in my ability to work on a medical topic in Southeast Asia, this work would never have come into existence. My very special thanks and appreciation go to my Ph.D. supervisor Prof. Dr. Monika Arnez, who, when Prof. Carle retired, kindly took over supervision. I am thankful for her comments and suggestions, and her professional guidance throughout the project. Furthermore, I wish to record my gratitude to Prof. Dr. Dr. Alf Trojan, who acted as my co-supervisor and encouraged me throughout the work. For methodological support and revision of text sections throughout the project I would like to thank Dr. Stefan Nickel. Besides my official supervisors from the University of Hamburg, there were plenty of interlocutors that have greatly contributed to this thesis. First of all, the German National Academic Foundation (Studienstiftung des deutschen Volkes) supported this Ph.D. project ideologically and financially and I would like to thank Dr. Peter Antes for being a great partner to talk with. I would like to express my heartfelt gratitude to Datin Dr. Fadhilah Zowyah Lela Yasmin binti Mansor, the Chief National Transplant Procurement Manager from the National Transplant Resource Centre, for being incredibly helpful and always cheerful no matter how much work there was. Informal talks with her provided a foundation for my research and her contacts gave rise to several interviews and informal discussions on organ donation. Finally, an office space at the National Transplant Resource Centre made my time in Malaysia so very productive. Special thanks goes to Matron Jamaliah and her staff for their help

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Politics, Piety, and Biomedicine

and excellent assistance during my time at the National Transplant Resource Centre. I would like to express my thanks to Dato’ Dr. Azmi bin Shapie, the then Director of the Medical Development Division and to Dr. Hirman bin Ismail, who is the Principal Assistant Director of the Transplantation Services Unit of the Ministry of Health and Dr. Muhammed Anis bin Abdul Wahab, who used to work at the Transplantation Services Unit of the Ministry of Health and the National Transplant Resource Centre. Both supported my research through assistance and advice, and informal talks with both were extremely valuable for the project. I am grateful to Mister Munshi bin Abdullah, the Principal Assistant Director and Mister Mohd Razif bin Zakaria, the Senior Assistant Director from the Health Education Division of the Ministry of Health. They increased the quality of the public survey questionnaire and supported my research project in every aspect. I would like to thank everyone who was willing to take part in the public survey in Kuala Selangor. Special thanks for their dedicated work conducting questionnaire-based interviews goes to the interviewers themselves, namely Salmi binti Abdul Kadir, Mohammad Nazir bin Abdul Rahim, Nor Suhaimi bin Bahauddin, Chang Yee Yin, Nur Alya Zahidah binti Fadzil, Lim Kak Yi, Lim Kean Tat, Lim Mei Hui, Lim Mei Yan, Loh Chok Khoon, Nabilah binti Madzri, Abdul Rahman bin Mahmud, Aziyan binti Mohd Yunus, Pua See Chian, Musliha binti MD Saleh, and Tee Han Sheng. Furthermore I would like to thank all medical and religious experts, who took precious time for lengthy interviews and contributed to the research in sharing their knowledge, experience, and beliefs without any reservations. Due to reasons of confidentiality their names cannot be mentioned here. For performing statistical analysis of this work I would like to thank Dipl.Math. Ulrike Schulz. My deepest gratitude goes to Dr. Martina Heinschke for providing valuable literature, sharing her thoughts on the project, and meticulous revision of text segments. I particularly enjoyed extensive and indepth discussions of ideas regarding scientific research with her and Bettina David. Special thanks go to Stella Schmidt for being incredibly helpful in tedious literature search, and Heike Schmüser, who knows best how to overcome bureaucratic obstacles. For an incredible great cooperation on two successful projects on Islamic bioethics that have both shaped this work, I thank Prof. Dr. Thomas Eich and Dr. Morgan Clarke. The indispensible anthropological input from Morgan Clarke has lead to a radical change in the presentation of the initial account in the latter stages of the work, something I am especially thankful for. For English proofreading, revision and great lectorship of the present work I thank Paul Harris.

Acknowledgements

The discussions, questions, and comments I received during teaching and when I presented my work at workshops, seminars, and conferences, helped me refine some of my arguments and were much appreciated. Here in particular I would like to thank Sue Ling Höff ken and Julia Karlina Lubis for their ideological support and friendship. Last but not least, I am especially grateful to my family. For their everlasting support for any of my projects and motivating conversations I am grateful to my parents Nati and Michel and my sister Lily. I am thankful to my partner Lars, who has greatly supported me, especially during the fieldwork when he accompanied me to Malaysia and took care of our children, while I spent an incredible amount of time researching. I thank Emma, Arthur, and Charlie for the sake of being in my life, which in itself has been motivating.

23

Preliminary Remarks

Generally, the style of my citation in the presented work is based on the Chicago Manual of Styles, 16th edition (Humanities Style), with certain adjustments according to my conveniences as medical sources and sources from the humanities are quoted more or less equally often. Internationally it is common practice to cite the family name followed by the first name, separated by a comma. It is standard practice for Chinese names to put the family name in front, followed by one, or more often two first names, without using a comma. Thus in the name Leong Hin Chin, the surname is Leong and the given name is Hin Chin. I cite Chinese names according to the Chicago Manual of Styles, separated by using a comma (e.g. Leong, Hin Chin). Malay names consist of the person’s name(s) followed by the father’s name(s), indicated by bin (son of) or binti (daughter of) in between the individual’s and the father’s name(s). Thus Siti Norhayati binti Mohamad Salleh is the name of the woman Siti Norhayati, who is the daughter of Mohamad Salleh. As this is a patronym and not a family name, anthropologists cite Malay names under their given name1. International, in particular medical references exclusively cite the patronym as the ‘surname’, and often withhold the individual’s first name. To unambiguously identify the quoted sources, I cite Malaysian Malay names under their patronym according to the Chicago Manual of Styles, separated by a comma (e.g. Mohamad Salleh, Siti Norhayati). I am, however, aware that it is rather impolite to refer to Norhayati’s work by citing her father’s name. In addition, I separate multiple authors with a semicolon to clearly identify the first name(s) of a particular author, in order to retrieve publications cited under their first name(s).2 1 | For example see Hoffstaedter, Gerhard. Modern Muslim identities: negotiating religion and ethnicity in Malaysia. Copenhagen: NIAS Press, 2011. 2 | For example Tumin, Makmor; Noh, Abdillah; Jajri, Idris; Chong, Chin-Sieng; Manikam, Rishya; Abdullah, Nawi, “Factors that hinder organ donation: religio-cultural or lack of information and trust“. In: Experimental and Clinical Transplantation 11 (2013): 207-210.

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Since this research involves Malaysians, who are predominantly not Christians, and either follow the Islamic lunar or the Chinese lunar calendar, I have used CE (common era) instead of AD (anno domini, meaning in the year of the Lord) and BCE (before common era) instead of BC (before Christ). All Malay (Bahasa Malaysia) and Chinese pinyin terms are italicised. When Chinese characters are given, they are provided as long characters because those are mainly used in the Southeast Asian region.

Preface

I was thrown into a Chinese Malaysian family when I had just turned sixteen. My keluarga angkat, my adopted family, lived in a small house in a rural area in Selangor. It was constantly hot, sticky, and humid. Chinese and Indian households shaped our neighbourhood, here and there Malay houses were scattered. It was terribly noisy everywhere – the rain forest on the other side of the street sounded weird, the ancient looking fan made a dangerous noise as if it would drop off any second. On top there were agitated clinking snatches of Chinese words – Hokkien and Hakka – as I was later to learn. Conversation – if any at all – was mainly possible through gestures and signs, only the youngest of my many siblings conversed with me in English – or better Manglish, a pidgin English that follows its own rules. Very soon I realised that no one was ever physically alone here. We constantly had visitors – the extended family came and would not leave for months, friends and acquaintances came and went, neighbours were always present. Nonetheless I often felt lonely with my thoughts, feeling as though the time stood still: I observed every single thing – the way they acted and communicated with one another, the way they did things – I meticulously noted every aspect and eventually enjoyed mimicking the way they acted. To me Malaysians were so much alike and after some months they would tell me how well I would blend in. During one of my first school days I was instructed that in fact Malaysians were not alike at all: a chocolate brown boy asked me whether I could tell if he were Malay, Chinese or Indian. In fact, at first I did not understand his question, as I thought it would be redundant to categorise someone, instead of getting to know him. He elucidated in a lengthy monologue that one could tell from the appearance which ‘race’ they belonged to, and that they – the Malays, Chinese, and Indians – would differ considerably from one another. I felt that this was such rubbish – especially because I felt so very different from the Malaysians: to me they seemed to be so similar in their mindset and actions. From my European point of view they had so many more commonalities than distinctions. The boy was obviously amused that I was not able to tell which

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Politics, Piety, and Biomedicine

‘race’ he belonged to, and proudly ended by telling me that everyone thought he was Malay, because of his appearance, but in fact was Chinese. He was obligated to comfort me by letting me know that I would soon learn how to properly categorise Malaysians according to their ‘race’. My experience shows that the Other only emerges in segregation to one self and may be perceived differently according to one’s own personal contextualisation or identity. My German identity gradually vanished and became less important. ‘Kat rumah, at home, I discovered the Chinese world, embracing the exciting social and religious life, including their spirituality – when for example kaima, mother, felt sick and went to see the tiaotong, the spirit medium, or when one of us had fever. Then the horn of a rhinoceros was slowly rubbed off in a shallow dish and taken as a remedy. While kaima, a Hokkien born in Malaysia, would often use Malay loanwords in her everyday language, father belonged to the first immigrant generation, who virtually exclusively spoke Hakka, a different Chinese dialect. On the other hand I merged into the Malay world ‘kat sekolah, in school and at a friend’s house, were I soon became anak angkat, an adopted daughter. I stayed over for long weekends in their wooden house in the deep jungle. Their social and religious life was gentle and calm. I spent hours, lepak, hanging around enjoying the kampung, village life. In short, I blended in, felt secure, and truly enjoyed my new Malaysian life. Only once in a while was I reminded of my German identity, usually when Malaysians communicated their images of Germany: great cars, crazy Nazis, excellent soccer, and impressive engineering. All of a sudden, one night my seemingly beautiful Malaysian life was interrupted: People were up and about running up and down, children were crying. I got up to take care of one of them and realised that kaima, one of my brothers and his wife were trying to get father in the car. They had called an ambulance, but no one came – this was rural Malaysia. He died in our car on his way to the nearest hospital – as we later learned due to a heart attack. Never before in my lifetime had I seen a corpse, and I cried hysterically when he was laid out in our living room for an entire three-day period. I was horrified, because someone had just simply ceased to be. Moreover, I was unsure about the appropriate behaviour, so I felt insecure. When we dressed him for the public viewing, blood ran out of his mouth when my sister and I tightened his tie. For days on end I felt like I was in a trance, the air was filled with the fragrance of burned incense sticks, leading to the burning of eyes that were unable to stop crying. We constantly prayed and burned incense paper, and other paper-made things such as houses that he would need in the afterlife. The corpse was moved into a small transporter and we, the family, accompanied him on his last journey. I was dressed in traditional mourning clothes, the patch on my right arm showed me to be his daughter-in-law, a position that made me more than just an adopted daughter, it made me part of

Preface

their family ties. We arrived at the cemetery where we once again kneeled down as a family and prayed. My face was drowned in tears. At the crematorium, we saw him slowly sliding into the furnace, my heartbeat raised to infinity, and my breath got stuck in my chest. Whereas I was reminded of my German identity – images of concentration camps with stacked emaciated dead bodies carelessly thrown onto one another – my family seemed to be alleviated by the burning of father. We picked a particularly good space for the urn at the nearby pagoda and had an appointment the next day to pick out left bones with chopsticks from the residual burning – it is said that bones that survive the crematorium stand for a strong character. Back home in the afternoon a giant rama-rama, a butterfly, sat on the altar in front of father’s photograph. You sometimes catch a glimpse of those large rama-rama when they fly in and instantly out again. This one just sat there, we would head towards it, but it would calmly stay. It seemed that everyone knew something I did not. Kaima smiled contentedly and told me that father had come back for one more time to bid farewell and wish us well. When dusk arrived, the rama-rama left and father’s soul was free. Even though my inner German voice told me that I do not believe in souls, it allowed me to let go peacefully. Many years later a lecturer at the Department for Austronesian Studies was pleased that I had had the opportunity, even the luck, to watch a traditional Chinese funeral. I was confused about this statement, as the lecturer had obviously not understood what had happened to me. I had become part of that family and the Malaysian life, and I would rather not have attended that funeral. To me this was not an interesting anthropological observation, to me this was the loss of a faithful companion. During my time in Malaysia, I experienced life in an extended family; living together in a limited space, accepting each other as we were and being sure of each other’s care when it was needed. Many friendships resulted from my life in Malaysia. Those friendships were not so much about having the same opinion or having the same Weltanschauung, worldview – which was virtually never the case – it was more about shared experiences, being engaged in one another’s lifestyle, and at the start being the Other that enriched our mutual friendships. My very special thanks with all my heart therefore go to kaima, Fong, Ah Peng, Peng Peng, and my overwhelmingly large family and to my dearest friends Soon, Hui Ching, Lea, Chee Keong and Salmi, and all of 4G and JG – without whom I would have been lost in what seemed to me to be a strange world. Retrospectively, I often felt the need to give something in return to the Malaysian people that enabled me to be part of their life while at the same time allowing me to be different. Often, material gratuity somehow did not meet my needs. After many years I feel that this piece of work may be my very own

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way to give something in return. I do this from multiple perspectives: as an ‘outsider’, a mak saleh, a Westerner, a trained physician; but also as an ‘insider’, a Malaysian anak angkat, be it in the realm of the Chinese or the Malay world, who has experienced traditional medicine, be it spiritual or herbal, and the ordinary klinik kesihatan, the rural health clinic. As my personal experience indicated and this piece of work further expounds, there are politically desired demarcation lines between Malay and Chinese Malaysians and the health sector is no exception to this. Chinese people are labelled as being attached to urban life and ‘modern’ medicine, willing to donate organs and accepting brain death. Malays on the other hand, are ascribed to being attached to their village life, viewing ‘modern’ medicine with suspicion, hence virtually never giving up their organs and are said to have not yet ‘understood’ the concept of brain death. Although it is true that Chinese Malaysians donated organs more often than Malays, the overall donation rate in Malaysia is extremely low. In the past 15 years there have been between four and forty donations from brain-dead, heart-beating donors each year and to conclude the above-portrayed picture would be overly simplistic, given the absolute, small numbers of deceased donations per year. The aim of the present study is to overcome the simplicity of this polarising dichotomy between Malay and Chinese Malaysians regarding their willingness to donate organs in presenting a more differentiated picture of why Malaysians are reluctant to donate their organs or unsure about the concept of brain death and take their concerns seriously. This new picture may not draw a demarcation line between ethnic groups but in contrary exposes that attitudes towards organ donation and brain death are strongly dependent on personal identity in this ever more complex world, which increasingly disrupts the positioning of individual identity along ethnic lines or religious affiliation. The process of this work has not only generated ‘academic outcome’ in the form of this account, but has enabled a transformation of myself from a staunchly biomedically trained physician with an interest in culture and its people into a passionate clinician appreciating the world through the anthropological lens. Not least because of this, I was confronted with what Peletz (2013: 604) has described as a “challenge, … related to our readership, [that] has to do with the fact that many of us write for, or are held accountable by, multiple audiences: professional colleagues straddling different academic disciplines; variably situated interlocutors and friends in the field; and religious [and biomedical] authorities and bureaucrats in the countries that host our research and sometimes vet our publications”. I am well aware that I cannot meet the often contradictory demands which I encountered from people in the field. Even though, I imploringly hope to contribute to entangling some of the complexity of the Malaysian ‘venture of transplantation’ with its manifold actors who frequently pursue conflicting interests by providing a fine-tuned and detailed account of the multiple told

Preface

and untold stories of transplantation, organ donation, and brain death in the Malaysian context. By writing this thesis in English rather than in German, I would like to make this piece accessible to a broader audience, including those Malaysians who are affected by this topic.

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Abstract Zusammenfassung

Transplanting organs under the premises of diagnosing brain death have become emblematic of the possible conflicts between scientific and religious, modernising and traditional, and academic and popular views on adequate medical care and death and dying. In Malaysia there is the perception that the Chinese population readily and often donate due to the positive attitude of Buddhist scholars, whereas Malays are sceptical towards post mortem organ donation and donate seldom due to a reserved Muslim clergy. This thesis aims to capture the heterogeneous and often contradictory views on transplantation, organ donation and brain death in the context of Malaysia. Therefore, I make use of the analytical construct ‘global assemblage’, a concept that grasps well the complexity of discourses and practices that biomedicine entails. Based on a total of 15 weeks of ethnographic fieldwork conducted between 2009 and 2014, this work delineates how the global assemblage of the transplant venture has played out in Malaysia. That research included informal conversations with representatives from the Malaysian Ministry of

Die Transplantation von Organen unter der Voraussetzung der Hirntoddiagnose ist symbolisch geworden für mögliche Konflikte zwischen naturwissenschaftlichen und religiösen, modernen und traditionellen sowie akademischen und populären Ansichten zu adäquater medizinischer Versorgung, Tod und Sterben. In Malaysia herrscht die Ansicht, dass die chinesische Bevölkerung aufgrund der Beeinflussung durch der Organspende gegenüber positiv gestimmte buddhistische Gelehrte gerne und oft ihre Organe spenden, wohingegen Malaien aufgrund einer reservierten muslimischen Geistlichkeit der postmortalen Organspende skeptisch gegenüberstehen und selten spenden. Ziel der vorliegenden Arbeit ist es, diese heterogenen und oftmals widersprüchlichen Ansichten zu Transplantation, Organspende und Hirntod zu erfassen und im Kontext Malaysias ethnischer und religiöser Vielfalt darzustellen. Dazu wird das analytische Konstrukt der ‚globalen Assemblage’ herangezogen, welches die Komplexität der Diskurse und Praktiken, die Biomedizin mit sich bringt, gut erfasst. Basierend auf insgesamt 15 Wochen ethnographischer Feldforschung zwischen 2009 und 2014, beschreibt diese Arbeit, wie sich die globale Assemblage des Transplantationsvorhabens in Malaysia manifestiert hat.

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Health and 19 semi-structured interviews with transplant physicians, and Muslim, Buddhist and Daoist scholars. In addition, medical policies, contemporary laws, information leaflets from government agencies, and religious edicts were consulted to further characterise the official religio-political stance on transplantation and brain death. Furthermore, structured interviews with approximately a hundred Malay Muslims and a hundred Chinese of Buddhist and Daoist faith living in a rural area of the Malaysian state of Selangor were conducted. Two semi-structured interviews, one with the district imam and one with the abbot of a local Chinese temple supplemented those insights. The work shows how the National Transplantation Programme has come into being through medical professional bodies and the National Transplant Resource Centre, an agency under the Ministry of Health and how it has developed further. The aim of the established transplantation programme is the nationwide treatment of end-stage organ failure by means of increased transplantations from brain-dead donors. To establish post mortem organ donation in Malaysia, physicians and state officials from the Ministry of Health have successfully convinced Muslim clergy from JAKIM, the federal Department for Islamic Development and from State Mufti Departments about this practice. Buddhists elites initiated the first transplants in the country themselves and have since supported the staterun transplant system. This official

Die Daten umfassen informelle Gespräche mit Repräsentanten des malaysischen Gesundheitsministeriums sowie 19 teilstrukturierte Interviews mit Transplantationsärzten und muslimischen, buddhistischen und daoistischen Gelehrten. Zusätzlich wurden medizinische Richtlinien, aktuelle Gesetzestexte, Informationsbroschüren von Regierungsbehörden und religiöse Erlasse hinzugezogen, um die offizielle religiöspolitische Haltung zu Transplantation und zum Hirntod darzustellen. Darüber hinaus wurden strukturierte Interviews mit annähernd 100 malaiischen Muslimen und 100 Chinesen buddhistischen oder daoistischen Glaubens aus einer ländlichen Region im malaysischen Bundesstaat Selangor durchgeführt. Zwei teilstrukturierte Interviews, eines mit dem Distrikt-Imam und eines mit dem Vorsteher eines lokalen chinesischen Tempels, haben diese Einblicke ergänzt. Die Arbeit zeichnet nach, wie das Nationale Transplantationsprogramm aus medizinischen Berufsverbänden und dem Nationalen Transplantationsförderzentrum, einer Behörde des Gesundheitsministeriums, entstanden ist und wie es sich entwickelt hat. Das Ziel des derzeitigen nationalen Transplantationsprogramms ist die flächendeckende Behandlung von Endorganversagen durch vermehrte Transplantationen von hirntoten Spendern. Um die postmortale Organspende in Malaysia zu etablieren, wurden muslimische Gelehrte von JAKIM, der gesamtstaatlichen Behörde für Islamische Entwicklung, und von den Mufti-Ministerien der föderalen Einzelstaaten von Ärzten und Staatsbeamten des Gesundheitsministeriums erfolgreich von dieser Praxis überzeugt. Die buddhistischen Eliten haben selbst die ersten Transplantationen des Landes initiiert und unterstützen

Abstract – Zusammenfassung

religio-political stance is in great contrast to the dismissive view towards the practice of transplanting organs from donors diagnosed as brain dead from the minority religion of Daoism and the surveyed Malay and Chinese population, who are sceptical towards this practice and express their concerns about the renegotiation of the moment of death and an institutionalised transplant system that may well lead to a coercion to donate. This work shows that the opinions of such communities, the Daoist community and the rural population, are excluded from the national discourse on transplantation, organ donation, and brain death; a discourse that to date has been dominated by the views of the medical, governmental, and religious establishments. At the same time, the preserved picture of ‘good/ laudable’ Chinese who donate and ‘bad/ungrateful’ Malays who object to donating, leads to the distortion of reality, namely that both sides are reluctant towards this practice and seldom donate their organs after death. This non-participation of Daoist scholars and the Malaysian populace on the national discourse, however, obfuscates unresolved concerns about transplanting organs and the disputed concept of brain death from a considerable part of the population and nullifies any attempt to address wider, vital issues as to the use of and extent to which biomedicine and medical technology in contemporary Malaysia actually benefits its people.

seitdem das staatlich geleitete Transplantationssystem. Diese offizielle religiös-politische Haltung steht im krassen Gegensatz zu der ablehnenden Haltung gegenüber Organtransplantation von hirntod-diagnostizierten Spendern seitens der Minoritätsreligion Daoismus sowie der untersuchten malaiischen und chinesischen Bevölkerung, die dieser Praxis ebenfalls skeptisch gegenübersteht. Ihre Sorge besteht in der Befürchtung, dass die Neuverhandlung des Todeszeitpunkts und ein institutionalisiertes Transplantationssystem den Zwang zur Organspende mit sich bringen könnten. In der vorliegenden Arbeit kann gezeigt werden, dass die Meinungen dieser Gemeinschaften, der daoistischen Gelehrten und der ländlichen Bevölkerung, vom nationalen Diskurs über Transplantation, Organspende und Hirntod ausgeschlossen werden – einem Diskurs, der bis heute von den Ansichten der medizinischen, regierenden und religiösen Eliten dominiert wird. Gleichzeitig kann deutlich gemacht werden, dass das weiterhin aufrecht erhaltene Bild von ‚guten/lobenswerten’ spendenden Chinesen und ‚schlechten/undankbaren’ nicht spendenden Malaien zu einer Verzerrung der Wirklichkeit führt – nämlich der, dass beide Seiten ungern und selten Organe nach ihrem Tod spenden. Die Nichtteilhabe von daoistischen Gelehrten und der malaysischen Bevölkerung am nationalen Diskurs verschleiert jedoch die ungelösten Sorgen über das Transplantieren von Organen und das umstrittene Konzept des Hirntodes weiter Bevölkerungsteile und macht jeglichen Versuch zunichte, weitergehende entscheidende Themen anzusprechen, etwa, welche Verwendung von Biomedizin und Medizintechnologie in welchem Ausmaß den Menschen im gegenwärtigen Malaysia tatsächlich zu Gute kommt.

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1. Introduction (Go West) Life is peaceful there (Go West) In the open air (Go West) Where the skies are blue (Go West) This is what we’re gonna do (P et S hop B oys in ‘G o W est ’ by M orali/B elolo/W illis)

We are going through a radical contemporary change of social, cultural, and economic life around the globe, which is felt to have profound but uncertain and confusing implications for human life (Collier and Ong 2005: 3). This transformation is often loosely referred to as ‘globalisation’ and in the Muslim world many transformations are all too quickly concealed under the label of ‘Islamisation’ (Collier and Ong 2005: 3 and Peletz 2013: 626f.). Both notions discourage the recognition of the complexity of this all-encompassing societal shift. The “almost unavoidable marker” globalisation does not capture those “heterogeneous and often contradictory transformations – in economic organization, social regulation, political governance, and ethical regimes” (Collier and Ong 2005: 3). Likewise, as Peletz (2013: 627) rightfully notes, Islam is not even related to many of the transformations currently affecting the Muslim world. And yet to those transformation processes that are influenced by Islam, such as the transformation of the Malaysian sharia judiciary system, Peletz (2013: 625) denounces the generalising term Islamisation as “a woefully incomplete and otherwise misleading gloss – partly because it is so reductionist”. Even though Peletz has made clear that the term Islamisation can by no means comprehensively grasp the manifold transformations in the Malaysian sharia court system, or for that matter any other system in Malaysia, few observers would deny that over the past four decades Islamic symbols and idioms have become a much more prominent feature of social, cultural, and political relations in the country, and there are indications that biomedicine has not been excluded from this process. Ormond (2013: 71ff.) for instance describes parts of the Malaysian healthcare system as having become ‘Muslim friendly’.

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To capture the vicissitude of the Malaysian medical system, I use the notion ‘global assemblage’ in the sense of Collier and Ong (2005: 3), and in analogy to Peletz (2013: 603ff.), who regards the Malaysian sharia judiciary system as global assemblage. So, what is global about the Malaysian medical system or in this particular case, what is global about transplantation, organ donation, and brain death in the Malaysian context and why is it helpful to consider it an assemblage? Biomedicine and experimental science, both attended by the production of high-technology equipment, have emerged in Euro-America and are nowadays not only practised, produced and utilised, but even developed further in virtually every corner of the world.1 Biomedicine – be it clinical medicine or medical research – is, so to say, a global enterprise, or assemblage that plays out at a certain locality, yet it has to be viewed in its global connectivity. This ensemble of often heterogeneous elements under the umbrella of biomedicine is “articulated in specific situations – or territorialized in assemblages – they define new material, collective, and discursive relationships” (Collier and Ong 2005: 4). The machinery of biomedicine, specifically the venture of transplantation – be it in form of material technology (e.g. ventilators) or specialised scientific expertise (e.g. surgical skills) – is organised in a global space, for example through scientific publications. Academic publications regarding transplantation, organ donation, and brain death are generated from around the world, and are easily made available to an entirely different locality.2 Potentially, presuming that bodies are biologically the same everywhere, research findings regarding transplantation that emerge in a specific locality would be valid anywhere around the globe (Brotherton and Nguyen 2013: 288 and Collier and Ong 2005: 4). But the body “is inseparable from evolutionary, historical, cultural, and sociopolitical contexts”, thus there is no “standardized ‘universal’ body”, though Lock recognises that this “entity … is indispensible to medical practice today” (Lock 2013: 296, 302).3

1 | I should note that I use the term biomedicine to describe mainstream modern medicine with its basis in science and emphasis on the (physical) body. Some use the term ‘Western medicine’ or just plain ‘medicine’ as opposed to ‘traditional medicine’ to refer to biomedicine. But precisely because biomedicine is not exclusively shaped in Western societies, I avoid the disorientating term ‘Western medicine’. 2 | A multitude of biomedical articles from diverse localities have dealt with ‘transplantation’, ‘organ donation’, and ‘brain death’ and are pooled, for example, under the search engine Pubmed: www.ncbi.nlm.nih.gov/pubmed. 3 | There is in fact evidence that social events can become embodied, in that they alter the molecular makeup of the epigenome and therewith influence gene expression. This means environmental factors may well have durable and even transgenerational influence on many health issues. See for example Kuzawa and Sweet (2009) and Labonté et al. (2012).

1. Introduction

Global phenomena like biomedicine are entrenched in established historical, cultural, social, and political structures, but at the same time “they have a distinctive capacity for decontextualization and recontextualization, abstractability and movement, across diverse social and cultural situations and spheres of life” (Collier and Ong 2005: 11). They are not limited by the vagaries of a cultural field, but limited in the sense that specific technical infrastructure, administrative systems and ethical regimes have to be in place to practise biomedicine, in this case to transplant organs from one site to another (Ibid: 11, 13). Thus, biomedicine is usefully viewed as being global in the sense that it features and forges relationships to a multiplicity of global discourses and practices. Here, the global is “abstractable, mobile, and dynamic and replaces the sweeping and seemingly outworn terms ‘society’ and ‘culture’” (Ibid 2005: 4). Yet, transformations in the realm of biomedicine are contradictory and are subject to inherent tensions. While the “global implies broadly encompassing, seamless, and mobile; assemblage implies heterogeneous, contingent, unstable, partial, and situated” (Ibid: 12). This means the global assemblage of the Malaysian transplantation system is composed of certain biomedical conditions, specific systems of political administration, ethical regimes, and the laity. Biomedical conditions involve techno-scientific developments, which have made possible the availability of organs. On the political side, the Ministry of Health and its multiple sub-agencies are concerned with the venture of transplantation. The ethical regime largely consists of the religious domain, an extremely heterogeneous field in Malaysia. Non-government religious umbrella organisations and prominent individual religious scholars have long been involved in the matter of blood and organ donation, but to an increasing extent state-run religious ministries, think tanks and committees have also emerged on the scene. Perhaps most important in this ensemble and sustainably pertaining to the availability of organs is the role of Malaysian laity that comes into play on at least two, if not three occasions: as potential consumers (organ recipients) and givers (organ donors), and as a public raising a moral voice, or as Collier and Lakoff (2005: 28) put it, the “‘society’ emerges as a central ethical subject in modernity”. This public and its appreciation to current transplant practices is as important as voices from the biomedical, political, and religious domain are, because the practice of organ donation and brain death directly pertains to their body (Leib) and life. This increasingly informed public has, as we will see, its very own agenda on the matter. Within this assemblage, the producers of expertise – be them physicians, scientists, bureaucrats, religious authorities and to some extend the laity – ‘go global’, in that they are mutually linked to their peers at remote sites. As such, Malaysian transplant surgeons and nurses are sent for international transplant conferences and transplant coordination courses around the globe. Likewise Malaysian bureaucrats from the Health Ministry work in close cooperation

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with transnational administrative bodies, like the World Health Organisation, an agency that also has its own agenda on the issue (i.e. pushing the practice of transplantation in a defined regulatory framework but banning organ trade). Muslim and Buddhist clergy in Malaysia also attain a global quality in that they are sustaining strong international ties. For example, Muslim scholars sitting in national committees are in close contact to the transnational operating Islamic Fiqh Academy. Buddhist clergy, on the other hand, has intimate links to Sri Lanka, a country known to be one of the world’s largest cornea exporters. In this ensemble, not only the bearers of specialised expertise in the field of biomedicine, governance, and religion are ‘global’, but technical devices such as medical equipment or tools to deduce religiously virtuous conduct also attain a global quality. Laity, on the other hand, is global in the sense that their identity is not merely based on localised ethnic or cultural belonging, but progressively personal identity and individual religious practices are shaped by a multiplicity of global discourses, which negotiate the constitution of modern earth dwellers anew. Stivens (2013: 153), for instance, argues that family networks operate across national borders. Likewise, Hoffstaedter (2013: 273) points out that Islamic theology is part of a global discussion in that “Muslims in Malaysia today consume theology on the internet, watch lectures and sermons via Youtube [sic] and engage with these international theological debates as well as interact with the local imam (preacher) and ustad [sic] (religious teacher) and missionaries”. This sketch of the global assemblage is not self-contained nor do the actors necessarily agree on how to deal with the venture of transplantation and its entailing issues. The assemblage is united in the sense that all involved parties raise the question as to how one should handle this relatively new opportunity to receive or pledge organs upon death, but individuals and collectives are coming up with a multiplicity of suggestions, opinions, trends, and actions, which are often contradictory and pose a variety of diverse intentions and targets. This tension within the ensemble is what Collier and Ong (2005: 4) call a domain “in which the form and values of individual and collective existence are problematized or at stake, in the sense that they are subject to technological, political, and ethical reflections and intervention”. They view those assemblages as sites for the formation and reformation of anthropological problems whereas anthropological problems are best understood as problems concerning the social and biological existence of human beings rather than isolated theological or philosophical reflection on human life per se (Ibid: 4, 6). This study demonstrates that the global assemblage of the Malaysian transplantation system clearly is a site of the formation and reformation of anthropological problems, as for example the question of donating an organ in the state of brain death or opting for a human organ to treat end-stage organ failure. The concept of global assemblage helps us to comprehend features of the Malaysian transplantation system and its nascent anthropological problems.

1. Introduction

As such, it illuminates how civil servants and religious scholars have generated policies and religious obligations towards the transplantation of organs and the concept of brain death and how Malaysian laity has valued those predefined political and religious concepts. In the following, my aim is to entangle the complexity of the Malaysian venture of transplantation and illustrate the significance it has for individuals and collectivities by empirically unpacking this global assemblage in providing a detailed account of the multiple told and untold stories of organ donation and brain death in the Malaysian context. I thereby follow the tradition of Ong and Collier (2005: 15) to delineate the trajectories of change by giving a fine-tuned and thorough ethnography that addresses “the ‘big’ questions of globalisations in a careful and limited manner”. The first subchapter of the introduction outlines the objectives of the present study in detail. In the second subchapter, I argue that external labelling of ethnic and religious belonging provides little information about the actual lifeworld of a Malaysian individual. Therefore, to make an assumption about the influence of ethnicity and religion towards the attitude of organ donation and brain death, it is necessary to take personal identity and actual religious practices into consideration. The third subchapter describes medical pluralism in Malaysia. Here I locate organ transplantation and brain death in the biomedical system, while health beliefs of Malaysians4 are highly influenced from concepts that have emerged from locally developed traditional medicine. The subsequent part discusses how organ transplantation and brain death have historically emerged within biomedicine and experimental science in Euro-America. Here, I show that the practice of post mortem transplantation has become feasible due to certain techno-scientific developments, notably the advent of brain death. I show that the practice of transplantation and therewith diagnosing brain death have become adopted in the biomedical setting throughout the world, including Malaysia. At this point, I argue that the procurement of organs from brain-dead donors is not only controversially debated in the Euro-American context by certain people, but increasingly organ donation and its emerging anthropological issues are on everyone’s lips in Malaysia. In the fifth subchapter, I then come to delineate two underlying anthropological problems in the scope of the Malaysian transplantation system. From the government’s point of view, the main problem of the transplantation programme is the severe ‘scarcity’ of organ donors, calling the Malaysian public to come forward and donate organs upon death. The Malaysian laity on the other hand remains reluctant to donate organs upon death, indicating that they view organ donation and brain death at the least as ethically disputable 4 | The term Malaysian refers to people who possess the Malaysian citizenship, whereas the term Malay describes the ethnic belonging.

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practices. Furthermore, all involved parties associate ethnic belonging with a different willingness to donate organs. As such, Malay Malaysians are labelled to be reluctant to donate, while Chinese Malaysians are considered to readily give away their organs. Here, I argue that this assumption is impossible to maintain, given the absolute and extremely low numbers of organ donation upon death each year. The sixth subchapter then summarises current research publications regarding the attitude towards organ donation and brain death among Malaysians. Here I show that previous studies have unilaterally focused on cultural and religious beliefs and ‘misunderstandings’ as the major barrier to an increase in the post mortem organ donation rate in Malaysia. Thereby previous studies have sidelined the forces of the ‘biomedical battery’, government agencies, and religious authorities in the venture of transplantation. Furthermore, underlying religious perceptions and practices that have been held responsible for the reluctance to donate organs were not investigated in all their breadth and depth. This is especially true for followers of the syncretic religion of Shenism, a blend of Buddhism, Daoism, Confucian ethics, and folk beliefs, but to a lesser extent also applies to Malaysians who view themselves as Buddhists or Muslims. Another shortcoming of previous studies is the negligence of how Malaysians assess and value the concept of brain death against the background of ‘conventional’ death and the practice of organ donation. This is of specific importance as knowledge about brain death and its validity greatly influences the attitude towards donation upon death. The seventh subchapter addresses the fieldwork in a reflective manner and delineates the qualitative and quantitative approach to capture the complexity of the Malaysian transplantation system. The final subchapter outlines the organisation of the present work.

1.1 O bjective of the S tudy The objective of this study is to present a thorough account of how the venture of transplantation, the flagship of biomedicine, has played out in the distinctive Malaysian setting. This means the work explores the relationship between political governance, religious administration, and biomedicine and takes into account the views of the rural Malay and Chinese communities on transplantation, organ donation, and brain death. The account delineates how organ donation became a politically and to a large extent a religiously motivated mission to be spread to all Malaysians alike and unveils motives of why certain people in Malaysia writhe in pain when asked for a donation, while others virtually fetishise organ donation as a religious deed. In the beginning, the work was based on two hypotheses: First, Malays are reluctant to donate organs

1. Introduction

due to a reserved Muslim clergy and secondly, Chinese are willing to donate organs due to a supporting Buddhist clergy. However, during the fieldwork two issues gradually became apparent: firstly, certain Muslim clergy were indeed very keen to support national efforts to build up a transplant service, and secondly the majority of Chinese turned out to be reluctant to donate organs after death, a circumstance that seemed to involve certain Daoist teaching and Confucian ethics. Therefore, the main objectives of the present work were (1) to unveil the relationship between biomedical forces, political governance, and the religious domain within the venture of transplantation, (2) to delineate attitudes regarding organ donation and brain death among a selected religious clergy, (3) to explore the lifeworld of Malay and Chinese Malaysians in order to locate end-stage organ failure in view of medical plurality, and (4) to explore attitudes towards organ donation and brain death among a selected rural Malay and Chinese community. To reach these four main objectives, the following questions will be addressed: 1. Unveiling the relationship between biomedical forces, political governance, and the religious domain in the venture of transplantation. a. What are the operating structures of the state-run organ transplantation programme? b. What is the government’s policy on transplantation, organ donation, and brain death and how is it promoted? c. How are normative religious obligations generated in the Malaysian context? d. What are enunciated Islamic, Buddhist and Daoist obligations regarding organ donation and brain death? 2. Delineating attitudes regarding organ donation and brain death among a selected religious clergy. a. What are the attitudes towards organ donation and brain death among Muslim, Buddhist and Daoist clergy and what are they based on? b. Are attitudes regarding organ donation and brain death among Muslim clergy in contrast to normative Islamic obligations? c. Are attitudes regarding organ donation and brain death among Buddhist and Daoist clergy in contrast to normative Buddhist and Daoist obligations? d. Are there different attitudes towards organ donation and brain death between local (regionally active) and high-ranking (nationally active) religious scholars?

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3. Exploring the lifeworld of Malay and Chinese Malaysians in order to locate end-stage organ failure in view of medical plurality. a. What beliefs and practices make up the lifeworld of Malay and Chinese Malaysians? b. Where is end-stage organ failure located within the pluralistic medical field? c. How does the therapeutic option ‘transplantation’ compete with other options from biomedicine and with treatment regimes from other medical systems? 4. Exploring attitudes towards organ donation and brain death among a selected rural Malay and Chinese community. a. What are the attitudes towards organ donation and brain death among the rural Malay and Chinese population? b. Which attitudes regarding organ donation and brain death are similar or divergent between the Malay and Chinese study population? c. Are attitudes regarding organ donation and brain death among the rural Malay study population in contrast to normative Islamic obligations? d. Are attitudes regarding organ donation and brain death among the rural Chinese study population in contrast to normative Buddhist and Daoist obligations? To answer these questions it is necessary to explain how I understand and define the terms ethnicity, culture, and religion to then approach the biomedical therapeutic option of transplanting organs for end-stage organ failure and delineate ramifications of the current transplant system.

1.2 E thnicit y, C ulture , and R eligion In print and audio media, including advertisement, in politics and during casual conversations, Malaysia is often described as a multi-ethnic, multi-cultural, and multi-religious, sometimes even as a multi-‘racial’ society. The meanings of those terms are vague and the usage is frequently inconsistent. Therefore, I make some brief comments on ‘race’, ethnicity, culture, and religion and their relationship to one another. Ethnicity is frequently confused with ‘race’ or even wrongly used interchangeably. ‘Race’ refers to a group of a species that shares distinct biological features that are presumed to be different to those of another ‘race’. Applied to human beings, the concept of ‘race’, where humans are separated into biologically distinct ‘races’, is a scientifically false notion. On the basis of current scientific knowledge, all human beings belong to the species Homo sapiens and originated from Africa (Müller, Kluge and Heinz 2013: A314). The

1. Introduction

concept of ‘race’ is most controversial for two reasons, as Eriksen (1993: 4) points out: “First, there has always been so much interbreeding between human populations that it would be meaningless to talk of fixed boundaries between races. Second, the distribution of hereditary physical traits does not follow clear boundaries”. In fact, human beings do not have different genes, as often discussed in the lay press, but populations differ regarding their frequency of gene variations, which are either called mutations, or when they occur with a frequency above 1% are referred to as polymorphisms (Müller, Kluge and Heinz 2013: A314f.). This means, “there is often greater variation within a ‘racial’ group than there is systematic variation between two groups” (Eriksen 1993: 4). Therefore there are no definitive ‘races’, but gradual gene variations between or within a population which have emerged through the migration of the Homo sapiens throughout the world (Müller, Kluge and Heinz 2013: A314). The gradual change in both, traits (phenotypic characteristics) and gene variation of a population, usually correlates with environmental or geographical transition and is referred to as clines. The term cline describes the complexity between genetic determination and physical appearance much more accurately than the former categorical classification of ‘race’ (Ibid). Ethnicity differs substantially from the term ‘race’ in that it “refers to a way of socially grouping persons on the basis of historical or territorial identity or by shared cultural patterns” (Crawley 2005: S59), although “cultural difference between two groups is not the decisive feature of ethnicity” (Eriksen 1993: 11). An ethnic group is rather “created through a process of ‘othering’ [and ethnic] identity is a product of comparison and contrast with others who are deemed to be different” (King 2008: 131). This means ethnic identity is transformed, negotiated, and reinterpreted constantly, thus it is not a static entity. In addition, it is important to note that ethnic groups are internally diverse (Ibid: 129). That, however, does not prevent the Malaysian government from recording ethnicity in official documents. This poses problems to citizens that do not fit in any precast ethnic category as for instance children from mixed marriages. In addition, once an ethnic entry has been made it is virtually impossible to change in retrospect. Hoffstaedter (2011: 31, 60) gives an example of a doctor who must have perceived the parents of a newborn baby as Muslims, and subsequently documented the newborn to be ‘Malay’, whereas the parents were actually of Indian descent. The now grown-up adolescent is still categorised as ‘Malay’ with “all the positive discrimination”, but then he is also confronted with the unpleasant interference of religious police in his life (Ibid: 60). The Malaysian Department of Statistics documents ethnic belonging in the form of a census, most recently in 2010. The total Malaysian population of 28.3 million consists of 67.4% ‘bumiputeras’5, 5 | Bumiputra literally means “son of the soil“. The Malaysian government uses this term to refer to the Malay ethnic group and indigenous people (orang asli) living in Malaysia. Bumiputra enjoy certain privileges from the government.

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mostly ‘Malays’ (63.1%), and 24.6% ‘Chinese’, 7.3% ‘Indians’, and 0,7% belong to ‘other’ ethnic groups (Malaysian Census 2010: 5). This means, according to the census, Malays make up the largest ethnic group, followed by the Chinese. Ethnicity may get confused with the term culture. “Culture refers to patterns of explanatory models, beliefs, values, and customs. These patterns can be expressed materially (as in diet, dress, or ritual practices) or nonmaterially (as in language, social or political order, or kinship systems)” (Crawley 2005: S59). Although ethnicity and culture are similar, they are distinct in their concepts. “For example, we can think of the culture of Western medicine with its own specific language, values, and practices … [But w]e do not think of medicine as having ethnicity” (Ibid). Analogue to ethnicity, there is great diversity within a cultural group and a member of any group may inhabit multiple ethnic and cultural identities (Ibid). Religion may be the term that is most difficult to capture. Religion is embraced by culture, and interwoven with society so that it can hardly be viewed as an isolated entity that exists next to culture (Schmidt 2008: 11f.). Moreover, not all beliefs and rituals that are found within a certain culture can be attributed to religion. Currently, no definition of religion is universally accepted and captures all of the depth of religion (Schmidt 2008: 22 and Eller 2007: 28). Eller gives the following broad, but encompassing description: “Every religion makes a (more or less integrated) system of claims about the “supernatural” world and its relationship with the natural, human, and societal worlds” (Eller 2007: 52). He suggests that it is more meaningful and accurate to speak about ‘religious fields’ instead of a certain religious type “recognizing that any religious field may contain some and not other elements, may elaborate some elements more than others, and may mix elements in ways that at first would seem … unlikely or incompatible” (Ibid). Moreover, “[w]hile we are accustomed to thinking of a world religion as a monolithic, homogenous entity, the truth is that it is really an assortment of more or less closely related local variations” (Ibid: 204). In the context of Malaysia, where Islamic, Buddhist, and Daoist groups are internally diverse as previously described by Lee and Ackermann (1997), talking about religious fields indeed seems more accurate.6 6 | The term ‘religious field’ based on Eller solely describes the diversity within a certain religion and has to be distinguished from the ‘religious field’ coined by Pierre Bourdieu (1991). Bourdieu’s genesis and structure of the religious field first and foremost is a sociology of Catholicism and the French Church (Dianteill 2003) and thus cannot be transferred to the Malaysian context. Furthermore, Bourdieu makes a rather strong hierarchical distinction between religious specialists and the dispossessed laity. “For Bourdieu, the authentic religious producers are the official institutional specialists who “consciously” reinterpret religion, as opposed to the “dispossessed” consumers/laity, who can merely “demand” but not “supply” religious meanings” (Dillon 2001: 414). But lay people can and do manipulate religious symbols to allow change within religious

1. Introduction

Corresponding to the allocation of Malaysians into ethnic categories, the Malaysian government defines religious categories. According to the Department of Statistics, the religious distribution is 61.3% ‘Muslims’, 19.8% ‘Buddhists’, 9.2% ‘Christians’, 6.3% ‘Hindus’, and 1.3% belong to ‘Confucianism, Daoism and Tribal/folk/other traditional Chinese religion’, while 2.1% are categorised as ‘other religion’, ‘no religion’, or their religion is ‘unknown’ (Malaysian Census 2010: 9). In Malaysia, religion is closely linked to ethnicity and Gomes (2013: 96) indeed speaks of Malaysians as being obsessed with ethnicity. The Malay individual is defined by the constitution as “a person who professes the religion Islam, habitually speaks the Malay language and conforms to Malay custom” (Hoffstaedter 2011: 17). However, according to the census from 2010, only 61.3% of the population are Muslims, whereas as many as 63.1% of the Malaysian population are categorised as Malays. In other words there are at least 500,000 Malays who are not categorised as Muslims. Moreover, a wide variety of Islamic identities among Malay Malaysians have been described previously (Hoffstaedter 2011 and Nagata 1984). Similar conditions apply to the Chinese population. Although they often label themselves as Buddhists in official documents, they are mainly followers of Shenism, a blend of Buddhism, Daoism, Confucian ethics, and folk beliefs (Ackerman and Lee 1990: 212, Kuah-Pearce 2009: 30ff. and Tan 2000b: 282, 297).7 This suggests highly that preset ethnic and religious categories of an individual provide little information on how the individual defines and conceptualises his or her ethnic identity and lives out his or her religion. Therefore, it is important to ascertain “how religions are actually practised and used by real people in their real socially structured lives” (Eller 2007: 28). What their life is all about can be captured with the term ‘lifeworld’ (Lebenswelt), which compromises more than just ‘daily life’ or ‘everyday life’. The lifeworld includes four components of social reality that are personally experienced – directly or indirectly – at a certain time, in a defined space. First, there is the ‘world of immediate consociates’, which is directly experienced in the here and now (Schütz and Luckmann 2003: 71f.).8 Thereto affiliated is the ‘world of contemporaries’ that takes place in the here and now, but at a different locality (Ibid: 72f.).9 The other two components of lifeworld are the ‘world of institutions, meaning power is rather all around than merely located on the side of religious clergy (Dillon 2001: 425). 7 | It should be noted that some cultural studies scholars use other terms to describe the religion of Chinese people in Malaysia and Singapore. Chee-Beng Tan (2000b) uses the term Chinese Religion and Jean DeBernarndi (2004) prefers the term Chinese (popular) religious culture. 8 | The ‘world of immediate consociates’ refers to the ‘Welt in aktueller Reichweite’. 9 | The ‘world of contemporaries’ refers to the ‘Welt in potentieller Reichweite’.

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predecessors’, the ‘Vorwelt’ and the ‘world of successors’, the ‘Nachwelt’ (Ibid: 133ff.). Both components lie in another time period and can only be experienced indirectly. The world of the predecessors is a kind of social memory, incorporating cultural and religious rituals and practices and family traditions. This world is completed and only accessible for the individual through narratives, tales, and stories through which religious and cultural heritage is passed on to the next generation (Ibid). The world of successors is, in principle, open and the point of contact with it is the subjective experience of generation (Ibid: 139). In a sense, this part of lifeworld opens up new vistas to the world to come and puts forward the idea of a modern way of life. At this point, I would like to mention the thoughts of Schmidt (2008: 21) regarding the importance of capturing the tension between ‘lifeworld’ and ‘normative obligations’, that is, the tension between how a person actually perceives organ donation and brain death and how that person should perceive this according to predefined medical, political or religious concepts. Those tensions directly relate to the question of “How should one live?” and Collier and Lakoff (2005: 22) refer to those tensions as ethical problems. In their sense, ethical problems “involve a certain idea of practice (“how”), a notion of the subject of ethical reflection (“one”), and questions of norms or values (“should”) related to a certain form of life in a given domain of living” (Ibid). In that way, they argue, elements of contemporary social life that feature centrally in newly evolving and potentially problematic situations can be identified (Ibid). In this particular case, the thorough examination of the practice of organ donation upon death and the diagnosis of brain death constitute the ‘how’. Religious clergy and Malaysian laity present the subject of ethical reflection, while biomedical, political and religious norms and values regarding organ donation and brain death constitute the ‘should’. Thus, how a person actually lives and how that person should be living according to predefined political or religious concepts are often in blatant contrast to each other. This is, for example, clearly apparent among the Malay population, who are the least likely to donate or pledge organs but have been given multiple religious edicts in favour of organ donation. This also applies vice versa to the Chinese population: whereas Buddhist statements encourage or even demand organ donation, only a small fraction of the Chinese population actively supports organ donation, suggesting that other religious aspects, for instance drawn from Shenism, have a more pronounced impact on the attitude towards organ donation than previously thought. This great discrepancy of divergent views regarding organ donation and brain death between normative religious obligations on the one hand, and individual clergy and laity on the other hand, is a recurrent theme throughout this thesis. While this study is not judging whether any of the mentioned ethnic identities or religions are ‘true’ or ‘correct’, it treats individual identity and religious practices as influential personal factors that impact on the attitude

1. Introduction

towards organ donation and brain death. The explanation of ethnicity, culture, and religion serves as a basis to understand the plural society10 of Malaysia, in which Malaysians seek diverse medical systems to alleviate their sufferings. The following subchapter presents those various medical systems.

1.3 M edical P lur alism This subchapter provides an introduction to medical pluralism. According to Janzen (2002: 11), anthropologists have defined the coexistence of beliefs and practices of multiple medical traditions as medical pluralism, and in Malaysia a variety of traditional health systems coexist with biomedicine (Ariff and Beng 2006: 2). Biomedicine can be defined as medical interventions that are taught at medical schools and generally provided in hospitals (Dalen 1998: 2179). In contrast, complementary and alternative therapies and traditional medicine are practices and products that are not presently considered to be part of biomedicine, are not widely taught in medical schools, and are typically not reimbursed by medical health insurance (Eisenberg et al. 1993: 246). Classifications regarding traditional, complementary, and alternative medicine are not uniformly accepted and may overlap depending on from whatever focus the classification has been undertaken.11 For the purpose of the present study, traditional medicine denotes indigenous health traditions that exist throughout the world (Bodeker and Kronenberg 2002: 1582). Strictly speaking, alternative medicine is used in place of biomedicine, whereas complementary medicine is used in addition to it (Carroll 2007: 10). Complementary or traditional practices or products, for which there is scientific evidence generated within the biomedical system, may be mainstreamed into biomedical therapeutic approaches, which are then referred to as ‘integrative medicine’ (Ibid). Biomedicine expanded from Europe all over the world during colonialism and was introduced to Malaysia during British supremacy (Pfleiderer, Greifeld and Bichmann 1995: 70). As such, it was not perceived as one of many medical systems, but was given precedence over existing local medical systems (Bandel 2004: 7). For a long time, the Malaysian healthcare system was exclusively 10 | A plural society is defined as a potpourri of peoples, who mix but do not combine. For Malaysia this means to the greatest possible extent that each group (Malay, Chinese, Indians and natives) holds their own culture, religion, and language (King 2008: 135). 11 | Acupuncture, for example, in the German context would be a typical complementary treatment, whereas in the Malaysian context acupuncture is assigned to traditional medicine. Vice versa, physiotherapy is a biomedical treatment in Germany, whereas it is categorised as a complementary treatment in Malaysia. Interestingly, homeopathy enjoys recognition as an independent medical system in both Germany and Malaysia.

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aligned to biomedicine and only very recently did the Ministry of Health start to incorporate traditional and complementary medicine into their mainstream healthcare system in order to shift traditional medicine from its marginal status to having a more significant role in the national health supply.12 To regulate traditional and complementary medicine services in Malaysia the Traditional and Complementary Medicine Act 2012 recently came into force. Traditional and complementary medicine is defined as “other than the practice of medicine or surgery by registered medical practitioners, as defined in Medical Act 1971” (Talib 2006: 446). In the Malaysian context traditional medicine refers to beliefs, practices, and experiences that are often handed down from generation to generation and are established within a specific cultural setting. Those traditional medicines include, for example, Traditional Malay and Traditional Chinese Medicine. Complementary medicine in Malaysia, on the other hand, includes manipulative based practices (e.g. chiropractic or massage), energy medicine (e.g. Bach flower or Reiki), mind, body and soul therapies (e.g. psychotherapy or meditation), and biological based practices (e.g. nutritional therapy) (Handbook on Traditional Medicine 2011: 22f.). Many of these complementary practices initially evolved concurrently to, but outside of mainstream biomedicine in Europe or in the United States of America (Bodeker and Kronenberg 2002: 1582). However, further complementary local practices have emerged all over the world and today those practices are often transformed and modified when they travel into different cultural contexts.13 According to Ariff and Beng (2006: 2), Malaysia has a remarkably wellfunctioning biomedical healthcare service in urban and rural areas. Although biomedicine is not the product of local Malaysian culture, it relishes the reputation of being modern, scientific, and advanced, and thus respected as the superior form of medicine (Bandel 2004: 9). On the other hand, Malaysians use multiple forms of traditional healthcare despite also seeking biomedical care (Ariff and Beng 2006: 2).14 About 70% of Malaysians use traditional and 12 | Inter alia because the World Health Organisation recommended the integration of traditional medicine into national healthcare systems as an important healthcare resource. 13 | One example is that of yoga, which was initially developed in India. The popularity of yoga in the West resulted in modified or even newly created yoga practices that were then re-imported to India. In Malaysia, yoga is classified as Traditional Indian Medicine. 14 | The belief in traditional medicine and the controversy it entails was particularly impressive when prominent Malay healers held a public shamanic ritual in the hall of the most modern Kuala Lumpur International Airport to track down the airplane MH370, which disappeared on 8 th March 2014. The public was divided into supporters, who wanted to try anything possible to locate the aeroplane, and opponents who saw the Malaysian nation ridiculed by those healers.

1. Introduction

complementary medicine at least once in their lifetimes either simultaneously or successively to biomedicine (Siti et al. 2009: 294). The widespread utilisation of traditional healthcare providers demonstrates the intimate link Malaysians have to their specific medical tradition. This strongly indicates that their respective medical tradition and their views regarding body and death shape their underlying explanatory patterns about illness and healing and their expectations about care. Those underlying beliefs and behaviours are not always consistent with concepts that have emerged from biomedicine. In fact, biomedical physicians who treat patients with a distinct cultural background often experience a widening gap between their own concepts and the patients’ concepts regarding health, illness and appropriate care (Crawley et al. 2002: 676). From my own experience I can add that physicians who treat patients of the same cultural background experience this widening gap too. Many physicians are deeply attached to and in a sense lost in their biomedical world – a world that is hardly accessible to outsiders, irrespective of whether the cultural background of the physician and patient is the same. In this context it is important to distinguish the terms ‘disease’ and ‘illness’ from one another. A disease is a deviation from the ‘biological norm’ and, according to biomedicine, physicians are able to objectively examine a disease (Boyd 2000: 10). To recover from a diagnosed disease, patients often seek treatment from biomedicine. Illness, on the other hand, is the personal experience of unhealthiness and perhaps the most potent trigger to seek help in any medical system if it only provides rapid relief of symptoms (Ibid). Illness is subjective and dependent on personal socialisation and cultural imprint. In Traditional Malay Medicine, for instance, the aetiology of an illness may be natural (e.g. fracture due to a fall), supernatural (e.g. God’s will or malevolent spirits), or metaphysical (e.g. seasonal change) (Ariff and Beng 2006: 2), whereas a disease always has a pathophysiological correlate within the body, even though sometimes not (yet) known. In many cases, illness accompanies disease, but the two entities may exist separately from one another. For instance, in early stages of diabetes or cancer the disease may occur without the feeling of being ill. Vice versa, illness sometimes exists where no disease can be found. In this case, patients frequently seek traditional or complementary medicine for relief. In short, one can generally assume that ‘disease’ is the biological specifically important entity within biomedicine, while ‘illness’ is the entity traditional healers pay attention to. The venture of transplantation deals with the disease ‘end-stage organ failure’. In the concept of biomedicine, patients with kidney failure have an alternative treatment in the form of dialysis, although sustainable improvement of their quality of life is only achieved through organ transplantation (Beutel et al. 2006: 1135). Likewise, for patients with other endstage organ failures, such as heart, lung, or liver failure, organ transplantation is the only, ‘life-saving’, or at least life-prolonging therapy (Ibid). This disease

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concept of ‘end-stage organ failure’ and its healing strategy may collide with traditional concepts regarding illness, appropriate treatment, and more generally with the perception towards body and death. How this biomedical option to treat ‘end-stage organ failure’ has emerged and entailed the concept of brain death due to novel technical equipment is illustrated in the following subchapter.

1.4 B ioavail abilit y of O rgans The possibility to replace diseased, lost, or mutilated body parts from one person to another is subject to numerous tales and legends, and dates back at least three millennia in the mythology of medicine (Bhandari and Tewari, 1997: 495). Stories of the replacement of lost tissue or organs are found throughout the ancient world including Chinese tales and Muslim lore (Hamilton 2012: 1). They narrate that the Prophet Mohammed himself replanted the eye of Qatada ibn Noman, the arm of Muawith ibn Afra and the hand of Habib ibn Yasaf after they were mutilated or amputated during the battle of Bader and Ohod in 624 CE and 625 CE (Albar 1998: 93f.). Whereas Muslim lore focuses on the replacement of limbs and eyes incurred by war, Chinese tales concentrate on organ exchange in order to restore the equilibrium of Yin and Yang. In the writings of Lieh Tzu, the physician Pien Ch’iao, who was born in 430 BCE diagnosed two soldiers with an imbalance of Yin and Yang and recommended an exchange of hearts to restore equilibrium (Kahan 1988: 11). To ensure a successful procedure he administered strong narcotic herbs, switched their hearts, and used potent drugs afterwards. This apparently righted their imbalance and three days later, so Lieh Tzu tells, they woke up, felt well and bore within them the heart of the other (Ibid). Another tale is that of the legend of Zhu-Ertan, where Judge Lu picked up a heart in the nether world to assist an illiterate man by giving him a “smarter” heart (Bhandari and Tewari, 1997: 496f.). Clearly, ancient healers had at least imagined the possibility of restoration of mutilated body parts, if not aiming at providing a ‘better’, ‘healthier’ body part to the help-seeking person. Successful organ transplantation, in the sense that a person’s life is (sustainably) prolonged after the organ transfer, is, however, a genuine therapeutic option developed within the scope of biomedicine and experimental science in Euro-America. In contrast, it remained an unfulfilled idea in other medical systems throughout the world. To practise successful organ transplantation certain prerequisites had to be fulfilled, or to use the term Cohen has coined: the ‘bioavailability’ of organs for the reincorporation into another body had to be ensured. In Cohen’s (2005: 83) words bioavailability “is to be available for the selective disaggregation of one’s cells or tissues and their reincorporation into another body”. This bioavailability of organs came into being due to three technical shifts that evolved in chronological order

1. Introduction

(Ibid). As a starting point, improved tissue and organ extraction, preservation, and grafting techniques were developed in the late 19th and early 20th centuries. Initially, tissue became an accessible resource, as experimental corneal transplantation in the early 1900s lead to the first successful cornea transplant in 1905 (Moffatt, Cartwright and Stumpf 2005: 646). Around fifty years later the first solid organ transplantation became feasible, though at that time the transfer of solid organs was only possible between two identical living bodies. Hence, the first successful kidney donation was carried out between identical twin brothers in 1954 (Tilney 1986: 381). Due to the exact genetic match, an immune response did not occur, the kidney was not rejected and the recipient lived for nine more years until he succumbed a myocardial infarction (Merrill et al. 1956: 277ff. and Tilney 1986: 383). The second technical shift was the development of ventilators in the face of polio in the 1950s (Bernat 2005: 369). As I will show further below in detail, this eventually led to the implementation of brain death, and therewith augmented the organ pool by the “almost dead” (Cohen 2005: 84). Now not only kidneys from living people, but ‘vital’ organs like lungs, livers, and hearts were accessible for transplantation from brain-dead donors, whereas accident victims and suicides became particularly bioavailable (Ibid). Cohen (2005: 85) remarks that brain death became “the primary vector of bioavailability [and] created the new moral economy of the waiting list”. Thirdly, the invention and industrial manufacture of immunosuppressive drugs paved the way for organ transplantation on a large scale. As mentioned above, with the exception of identical twins, extensive suppression of the recipient’s immune system was indispensible to avoid rejection of the transplanted organ. Here, corticosteroids, possessing an anti-inflammatory property and azathioprine, were the first drugs used to suppress the immune system in the early 1960s (Curtis 2006: 907 and Watson and Dark 2012: i30). It was, however, not until the mid-1970s that the discovery of cyclosporine provided sufficient immunosuppression to permit the lasting transfer of lung, liver, or heart from one body to another (Watson and Dark 2012: i30). As such, the first lung transplantation was carried out in 1964, with an excellent early function of the transplant, but quick deterioration of the recipient who died three weeks after the transplant due to renal failure (Ibid). At around the same time experimental liver transplantation evolved resulting in the first liver transplants, with patients surviving between seven and 23 days (Starzl et al. 1964: 757). In 1967, the first heart transplant was performed, at which the patient succumbed eighteen days after the transplantation (Watson and Dark 2012: i30). Today, a wide range of different types of immunosuppressive agents is used in combination, whereby different organs and diseases require different drug protocols (Ibid: i30ff.). This has improved graft function and patient survival for up to 10 years for certain organs and patient groups (Ibid: i36ff.). In Malaysia,

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corticosteroids and azathioprine were first used in 1975, while cyclosporin was introduced in 1987, tacrolismus in 1999, and sirolimus in 2006 (Ahmad, Lei and Wong 2009: 103). This most recent technical shift of extensive introduction of immunosuppressants vigorously expanded the bioavailability of organs among the living population and expanded transplant operations to a global enterprise as now “far more persons could serve as donors, [because] bioavailability was no longer determined solely by consanguinity or brain death” (Cohen 2005: 85). With increased possibilities of organ supply from all over the world “[c]ommon norms of regulated bioavailability became increasingly incoherent” (Ibid). As such, transplant centres and increasingly nation states began to draw up diverse paths of regulations. Lock (2002), for example, delineated how the Japanese account of brain death and therewith organ transplantation differed from the American story. In Japan the concept of brain death has been highly controversial and transplantations have mainly been carried out as living donations (Kimura 1991: 123 and Takagi 2004: 77). This goes as far as donating a part of one’s lung, a procedure almost unique to the Japanese context (Chen et al. 2013: 3004 and Hayes and Baker 2014). In contrast, the Malaysian government explicitly prefers and promotes the procurement of organs and tissue from “cadaveric donors”, while living donation is tolerated only with the strict authorisation from the Unrelated Transplant Approval Committee (Policy on Organ, Tissue and Cell Transplantation 2007: 5, 17f.). This circumstance and the fact that the implementation of brain death has sustainably changed our previous understanding of death demands a thorough look into the advent of brain death. Lock (2002: 58f.) has richly illustrated that the implementation of brain death has triggered “an intractable debate as to what exactly constitutes death” and “added an entirely new debate about whether death can be located in the brain instead of in the heart and lungs, and how best it can be determined”. Since then biomedical experts have tried to solve the task of defining the “‘moment’ of death” (Ibid: 66). With the eventual equation of brain death with death, the moment of death has been shifted to an earlier point of time within the dying process. As mentioned above, due to the development of positive-pressure ventilators in the 1950s, medical staff could for the first time artificially respirate patients suffering from apnoea (Bernat 2005: 369).15 This allowed the continuation of heartbeat, circulation, and metabolic functions, that otherwise would have rapidly ceased (Ibid). In the late 1950s clinicians referred to those patients as being coma dépassé (beyond coma), as those patients showed signs associated with living patients (e.g. heartbeat, circulation, digestion, excretion, persistent pregnancy), but also presented features associated with dead patients (e.g. loss of breathing, no movement, no reflexes) (Ibid: 369f.). In the pioneering 15 | Apnoea literally means ‘without breath’. In the biomedical context it refers to the absence of spontaneous breathing.

1. Introduction

days of the transplant venture, the ventilator of the donor was stopped in the operating theatre, and everyone waited for the donor’s heart to cease beating, meaning those organ donors were declared dead by classic cardio-respiratory criteria (Machado 2005: 1938 and DeVita, Snyder and Grenvik 1993: 118). Even though the donor for the first heart transplant was declared ‘brain dead’ by a neurosurgeon, the first heart, lung and liver transplantations were performed after cardiac death, mainly to “avoid any controversy that might arise because the public did not yet understand the new concept of “brain death”” (DeVita, Snyder and Grenvik 1993: 118). In the case of the first heart transplantation, the surgeon himself removed the ventilator from the donor in the operating theatre and twelve minutes later the heart stopped beating. After another five minutes the corpse was attached to a bypass machine to preserve the heart until explantation was accomplished (Ibid).16 Four years after the first description of coma dépassé, Guy Alexandre, a Belgian surgeon, performed the first organ transplantation from a braindead, heart-beating donor in 1963 (Machado 2005: 1938f.).17 The transplanted kidney functioned immediately after implant, though the recipient died of sepsis 87 days later. Guy Alexandre presented his criteria of ‘brain death’ at the CIBA symposium in 1966, which were (1) complete bilateral mydriasis, (2) absence of reflexes and irresponsiveness to profound pain, (3) absence of spontaneous respiration, (4) falling blood pressure, necessitating increasing amounts of vasopressive drugs, and (5) a flat electroencephalogram (Ibid: 1939).18 The symposium was packed with distinguished transplant surgeons 16 | Interestingly, today one is witnessing a resurgence of the practice of non-heart beating organ donation (NHBD) mainly to increase the organ donor pool. This practice is also known under the abbreviation DCD, which stands for donation after cardiac death or donation after circulatory death and here death is determined due to cardiorespiratory criteria. 17 | The term brain-dead, heart-beating donation is the most precise term to describe a donation that has taken place after the establishment of the diagnosis of brain death. In the interest of readability the term ‘brain-dead, heart-beating donation’, ‘deceased donation’ and ‘post mortem donation’ are used interchangeably. Some authors refer to brain-dead, heart-beating donations as cadaveric donations. Since the picture associated with a cadaver is that of a cold, rigid corpse devoid of heartbeat, I will not use the term cadaveric donation, when referring to donations from a brain-dead, heart-beating donor, whose heart is beating and skin is typically warm. The term may however be used for tissue donation, (e.g. cornea), as tissue donation is possible from non-heart beating donors, donors who have ceased to live through loss of cardiac function. 18 | Bilateral mydriasis means the dilation of both pupils. Non-physiological causes of mydriasis include disease, trauma, or drugs. Vasopressive drugs increase the blood pressure by contracting peripheral blood vessels.

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and lawyers, but at that time no one was prepared to accept Alexandre’s new neurological criteria of death (Ibid: 1941). However, the concept of brain death, back then inter alia referred to as ‘irreversible coma’, became rapidly and widely accepted in the biomedical setting, when only two years later, in 1968, the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death introduced the concept to the scientific community (Report of the Ad Hoc Committee 1968: 337ff.). The committee was composed of a lawyer, a theologian, and a historian and ten physicians from transplant surgery, anaesthesiology, neurology, and psychiatry (Lock 2002: 89). Back then, individuals whose heart continued to beat, but whose brain was irreversibly damaged were of concern for two reasons: First of all, “the burden is great on patients who suffer permanent loss of intellect, on their families, on the hospitals, and on those in need of hospital beds already occupied by these comatose patients” (Report of the Ad Hoc Committee 1968: 337). Secondly, “obsolete criteria for the definition of death can lead to controversy on obtaining organs for transplantation” (Ibid). There is strong evidence that “organ transplants were uppermost in the minds of the committee” and it was made clear during the committee’s discussions that solely a physician can determine death, either by neurological criteria or cardiac arrest (Lock 2002: 90). With that, the definition of a person’s death was solely in the hand of physicians. Philosophical, religious, or legal perspectives on when a person has ceased to be were superseded by biomedical ‘facts’ about brain death. The committee’s criteria to define irreversible coma were similar to those from Alexandre: (1) being totally unreceptive and completely unresponsive, (2) no movements or independent breathing, (3) no reflexes, and (4) a flat electroencephalographic finding (Report of the Ad Hoc Committee 1968: 337f.). A year later, Henry Beecher (1969: 1070f.), who brought together the committee in the first place, suggested that an electroencephalogram was not essential to diagnose irreversible coma. A recent biomedical survey involving 80 countries has shown that “major differences are not so much in the acceptance of the concept of brain death, but in the procedure physicians use to make the final diagnosis” (Wijdicks 2002: 25). Today there is fairly uniform agreement among the global biomedical community that brain death is a clinical diagnosis, meaning the diagnosis is established through neurological examination, although confirmatory tests using technical equipment (e.g. electroencephalogram, angiography, magnetic resonance imaging, or Doppler ultrasonography) remain optional in many countries (Ibid: 21ff.).19

19 | It should be noted that Wijdicks (2002: 20) describes a great variety of how the apnoea test is applied from one country to another. The apnoea test is part of the clinical diagnosis of brain death.

1. Introduction

Notwithstanding some sort of common agreement on the concept of brain death among the biomedical community, there is a substantial number of philosophers, anthropologists, and biomedical physicians in Euro-America who believe that brain-dead people are not dead, but dying (see for example Birnbacher 1997, Hogle 1996, Lock 2002, Sharp 2006). To those people the current concept of brain death and the procurement of organs from brain-dead donors are highly controversial. In addition, religious scholars, and a further range of biomedical physicians, and scientists from the humanities currently debate the concept of brain death and organ donation in light of Islam, Buddhism, and Daoism (see for example Bresnahan and Mahler 2010, Cai 2013, Hamdy 2013, McCormick 2013, Padela, Arozullah, and Moosa 2013, Qazi et al. 2013 and Rady and Verheijde 2013). Those mainly academic discourses about organ donation and brain death give us a hint of the dimension of emerging anthropological problems that come along with the venture of transplantation. With the global spread of biomedicine, organ transplantation and brain death have reached Malaysia with all its entailing issues. Transplantation of solid organ and tissue from brain-dead donors and thereby diagnosing brain death has been practised in the country on a small scale since the 1970s (Kassim 2005: 176 and Wijdicks 2002: 20ff.). The following subchapter is an attempt to address and localise underlying anthropological issues concerning the venture of transplantation that have accrued in the specific Malaysian context.

1.5 A nthropological P roblems For Foucault a problematic situation occurs through something prior that has introduced “uncertainty, a loss of familiarity”, whereby “that loss, that uncertainty is the result of difficulties in our previous way of understanding, acting, [and] relating” (Rabinow 2005: 43 quoting Foucault). In the modern era, humanity has experienced and continues to experience radical social and cultural change, felt to have profound, albeit uncertain, confusing, and at times contradictory implications for life itself. This especially applies to the extremely rapid progress of basic and applied clinical research, which has led to the seemingly fantastic prospects of biotechnology becoming a reality, but also to fundamental modifications in everyday medical practice. Such an enduring change in medical practice is the tempting opportunity to ‘recycle organs’ and relocating the moment of death, making this a new circumstance, a new situation one has to deal with. This new situation is not merely perceived “as ‘a given’ but equally as ‘a question’” rendering the situation into a problematization (Ibid: 44 quoting Foucault). For Rabinow (2005: 44) a “problematization … is both a kind of general historical and social situation – saturated with power relations, as are all situations, and imbued with the relational “play of truth and false”, a diacritic

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marking a subclass of situations – as well as a nexus of responses to that situation”. This domain “is constituted by and through economic conditions, scientific knowledge, political actors, and other related vectors”, such as the religious field and laity (Ibid). In the particular Malaysian case, all involved parties pose the more or less similar question as to how one should handle this relatively new opportunity to receive or pledge organs upon death, which admittedly leads to a multiplicity of proposed approaches. Naturally, “there are always several possible ways of responding to “the same ensemble of difficulties””, whereby for Foucault the primary interest is not to intervene and ‘repair’ the situation, but to understand how these various responses are simultaneously possible (Rabinow 2005: 43 quoting Foucault). Not surprisingly, within this confusing discourse, most concerned parties claim their particular path, suggestion, or ‘solution’ as the ‘right’ one. It is exactly, “this ensemble of discursive and non-discursive practices that make something enter into the play of true and false…” (Ibid). This play of true and false was very prominent during my fieldwork. Conversations about organ donation and transplantation and the exchange of personal experience with it were frequently rendered into a value discourse about organ donation being ‘good’ or ‘bad’. Moreover, many interlocutors modified the discussion into a binary, religiously motivated question, asking whether organ donation and transplantation would be ‘good’/encouraged or ‘bad’/not allowed from their religious point of view. This gives us a hint of how deeply entrenched the struggle of relational play of true and false or for that matter of ‘good’ and ‘bad’ is taking place in this religiously and politically charged domain. This study, however, does not engage in whether organ donation upon death is ‘good’ or ‘bad’. Rather, it seeks to “identify the elements – techniques, subjects, [and] norms, through which the question of ‘how to live’ is posed” in relationship to organ donation and brain death (Collier and Lakoff 2005: 23). This is what they refer to as ‘regimes of living’: “a tentative and situated configuration of normative, technical, and political elements that are brought into alignment in situations that present ethical problems – that is situations in which the question of how to live is at stake”, such as the situation to abstract organs from one context to another (Ibid). Those regimes relate to anthropological problems in “that they concern reasoning about and acting with respect to an understanding of the good; … they are involved in processes of ethical formations – that is, in the constitution of subjects, both individual and collective” (Ibid). As we unpack the global assemblage of the Malaysian venture of transplantation we are to discover that the ‘regimes’ involved (biomedicine, politics, religion, and the public) follow their specific individual practices and principles of reasoning and valuation. Those diverse approaches are more often than not in great contrast to each other. As such, a multitude of varying practices and explanatory approaches on how to cope with this new possibility

1. Introduction

to receive and donate organs upon death are emerging. They constitute the site of the formation and reformation of anthropological problems. To fully comprehend these, we need to learn more about how those dynamic processes of various regimes are invoked, reworked, explained upon and eventually “provide a possible guide to action” (Ibid). This means that the venture of transplantation is neither a problem per se nor is a certain regime path the ‘right’ one. Rather, the assemblage of the Malaysian transplantation system is a space for re-negotiating practices and values that are currently at stake, such as the exploitation of the human body and localising the moment of death. In accordance with Rabinow (2005: 50), I approach those anthropological problems “as … concrete problems, dangers, and hopes that are actual, emergent, and virtual”. As such, I delineate two underlying anthropological problems in the scope of the Malaysian venture of transplantation: the alleged scarcity of brain-dead, heart-beating donors and the ostensibly unequal willingness to donate organs between ethnic groups. Non-commercial organ transplantation systems require organ donors on a voluntary basis and, according to Chen et al. (2000: 1809) and Vathsala (2004: 1873f.), the shortage of organs remains a major obstacle to most programmes worldwide, especially to those in Asia. Kassim (2005: 173) endorses this statement by emphasizing that the major impediment in procuring organs for transplantation in Malaysia is the severe lack of brain-dead, heart-beating donors. Biomedical publications suggest, that despite intense public relations in the past twenty years, the Malaysian organ donation rate has not improved to a great extent, and is far from meeting the ‘current demands’ (Rozaidi, Sukro and Dan 2000: 484 and Tumin et al. 2013b: 207). The overall number of organ donors between 1997 and 2012 best reflects this: in this 15-year period, a total of 378 Malaysians actually donated organs or sanctioned the donation from their deceased relatives (Mansor 2013: 208).20 The pledge of organs is equally rare. In the same period, a total of about 200,000 Malaysians or in other words 0.7% of the population signed to pledge their organs (Mansor 2013: 208). The government claims that the ‘scarcity’ of donors is the limiting factor of the national transplantation programme to fully operate with a high turnover. Hence, the government strongly promotes organ donation upon death and the acceptance of brain death. In contrast, the rather suspicious Malaysian public, potentially an enormous pool of organ donors, is effectively reluctant to donate organs, as illustrated by the above figures. To the government the low organ 20 | For comparison, 3,035 organs from brain-dead, heart-beating donors were alone recorded in the year 2013 for Germany and this number is after a sharp decrease due to various transplantation scandals in 2012 and previous years. Cf. Deutsche Stiftung Organspende Jahresbericht 2013, 2013, p. 56. Available under: www.dso.de/uploads/ tx_dsodl/JB_2013_Web_c.pdf (accessed 15 th Mai 2014).

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donation rate is problematic for two reasons, as exemplarily illustrated using a kidney, the most commonly donated and transplanted organ in Malaysia. The waiting list to receive a kidney is dramatically expanding, and therewith the government fears an increase of commercial kidney transplantation. According to Hooi, Wong and Morad (2005: S70ff.), the demand for kidneys is increasing as cases of end-stage kidney failure, due to a high prevalence of diabetes mellitus and hypertension, have become more numerous among Malaysians. This again leads to the fact that more and more Malaysians are being listed for a kidney transplant. According to the Transplant Resource Centre, slightly more than 17,100 Malaysians were registered to wait for a kidney at the end of June 2013.21 Kassim (2005: 173) argues that this widening gap between organ supply and demand encourages Malaysians to commercially purchase organs, especially kidneys overseas, a notion the Malaysian government strongly rejects.22 Typically, the diasporic Chinese community travels to China for organs, while the diasporic Indian community prefers India or Sri Lanka (Cohen 2005: 81 and Kassim, 2005: 173). As such, Malaysia has emerged as a major market for Chinese and Indian kidneys. Morad and Lim (2000: 1485) followed up nearly 800 Malaysians who commercially purchased a kidney from a live or deceased donor overseas. Given that the investigation was limited to a six-year period and only included patients who were followed up in a government hospital, this may only give an account of the tip of the iceberg of commercial transplantation (Morad and Lim 2000: 1485). This was recently confirmed by state officials during a workshop. Between 2000 and 2010, more than 830 Malaysians underwent their kidney transplant overseas, mainly in China and India.23 Those who are transplanted overseas pay between 50,000 and 100,000 Singapore dollars per procedure, but increasingly often return with serious infections, mostly hepatitis (The Star, 7 th May 2012), a circumstance I witnessed myself at a Singaporean hospital. Among those who seek transplants overseas are time and again prominent politicians, just like the former Malaysian Cultural, Arts, and 21 | Cf. webpage of the National Transplant Resource Centre: www.dermaorgan.gov. my/en/organ-waiting-list (accessed 16 th April 2014). 22 | From my personal fieldwork notes, 2009: Virtually all physicians I have talked to reported on patients that inquired information on purchasing organs in countries abroad. Often the patients had already obtained first information about available organs on the market through the Internet. In contrast, bureaucrats from the Ministry of Health hastened to condemn commercial organ transplantation when this topic was brought up. 23 | Ismail, Hirman; Mohamad, Zaher; Zaki, Morad; Shaikh M. Salleh, Shaikh. M Saifuddeen; Abdul Rahman, Noor Naemah; and Shapie, Azmi, “New law on organ and tissue transplantation in Malaysia: an Islamic perspective”. Paper presented at the workshop “The Social Politics of Islamic Bioethics” held at the University of Hamburg in January 2014.

1. Introduction

Tourism minister Sabaruddin Chik who underwent kidney transplantation in China back in 1999 (The Star Online, 7th October 2007). Government officials in the transplant enterprise underlined that today politicians would stay away from commercial transplants as it is frowned upon. At present, the exploitation of body parts from the vulnerable poor or, as in the case of China from executed prisoners, is framed as a major problem by the government, and their practice of subsidising immunosuppressants after such a procedure is ambiguous. While patients cover the cost for their overseas transplants on an individual basis or through communal donation, their monthly costs for immunosuppressants after such an operation was taken care of by the government up until January 2012.24 The government has subsidised the administration of cyclosporin since 2001, and that of tacrolismus since 2008 for transplant recipients who obtained their transplant overseas (Ahmad, Lei and Wong 2009: 105). This subsidy of immunosuppressive medication for patients who have undergone their transplant surgery overseas has recently raised concerns among healthcare professionals. Thereupon the Ministry of Health reassessed this subsidy, which was thought to further encourage Malaysians to seek commercial transplants in China or India, and subsequently froze the subsidy of immunosuppressant drugs for this group of patients “to combat illegal unethical practices of organ commercialism”.25 Politicians were not keen to stop the subsidies, as this was perceived as being a ‘killer to get votes’. At the moment, immunosuppressive medication is free for patients who have undergone transplant surgery in public hospitals in Malaysia, but is temporarily limited to a few immunosuppressive applications. In contrast, patients who have had their transplant done overseas do not receive subsidised immunosuppressive medication at all. Moreover, they may be charged on the basis of the Anti-Trafficking in Persons Act 2007, in case they are involved in arranging, raising funds for, or being otherwise involved in preparing grounds for transplantation overseas. It should be noted that so far nobody has been charged under the Anti-Trafficking in Persons Act. This move of the government to freeze subsidies for patients who have received their transplants overseas, gives rise, however, to new anthropological problems, for example the question of the fair allocation of obligatory immunosuppressive medication, as a transplant without immunosuppressive coverage is futile. Another area of conflict is the politically desired demarcation line between Malay and Chinese Malaysians in virtually all spheres of Malaysian life, including the health sector. Wherever organ donation was brought up – be it in the mainstream media, during interviews with interlocutors, or in informal conversations – people were quick to point to an ‘outstanding’ difference 24 | Ibid. The government provides post transplant medical care for all Malaysian patients who have had their transplant operation performed in Malaysia. 25 | Ibid.

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between Malay and Chinese Malaysians regarding their willingness to donate organs upon death. Thereby, Malays were readily labelled as being ‘oldfashioned’, privileging traditional medicine over biomedicine, and were said to have not yet ‘understood’ the concept of brain death. In contrast, Chinese passed for being ‘modern’ and being deeply attracted to biomedicine and its potentiality, and ‘correctly accepted’ brain death as the person’s death. In short, the prevailing stereotyping was ‘bad’ Malays virtually never donate, while ‘good’ Chinese readily do so. Looking at existing data in detail, this above-portrayed picture seems overly excessive yet simplistic. The statistics read that between 1997 and 2012, out of 373 brain-dead, heartbeating donors 226 were of Chinese and 20 of Malay origin.26 This breaks down to about 25 post mortem donations each year and includes brain-dead organ donors and tissue donors who died from cardiac death. First of all, this means that Malaysians are generally reluctant to donate organs, regardless of their ethnic identity. Secondly, one can certainly not say that Chinese Malaysians are generally overly enthusiastic about donating their organs upon death, when they merely provide approximately 15 brain-dead, heart-beating donations each year. Against this background the binary categorisation of ‘ungrateful’/ reluctant Malays versus ‘laudable’/willing Chinese is highly problematic and conflict laden. This exaggerated picture of the alleged difference between Malay and Chinese Malaysians regarding their willingness to donate organs is artificially upheld and seems to instigate a competition about which ethnic group can do ‘morally better’, that is provide more organs. Hence, whereas the most essential question should be: why are Malaysians reluctant to donate organs upon death, the local media prefers to ask, “WHAT exactly hinders Malaysian Muslims from organ donation?” (Ngah 2005: 47). The common, albeit simplified answer given, is that cultural beliefs and a ‘misinterpretation’ of Islamic teaching are the main causes hindering Malays from becoming organ donors (Chen et al. 2000: 1810). That this group of people may be reluctant because they doubt this treatment option to be beneficial or perceive brain-dead people as dying is not even considered, let alone seriously interrogated. The notion that cultural beliefs and a ‘misinterpretation’ of Islamic teaching account for the relatively low organ pledge rate among Malays is especially interesting, as this is in drastic contrast to official Malaysian 26 | Cf. webpage of the National Transplant Resource Centre: www.agiftoflife.gov.my/ eng/statistics2.html (accessed 6 th March 2013). The total number of 373 consists of 226 Chinese, 93 Indians, 20 Malays, and 23 are categorised as ‘others’ and 11 are listed as ‘unknown’. The Transplant Unit of the Ministry of Health relaunched this webpage in late 2013. Unfortunately this particular statistic is no longer accessible, and other registries like the National Transplant Registry regrettably only include data up to 2010: www.mst.org.my/ntrSite/publications_7thReport2010.htm (accessed 23 rd April 2014).

1. Introduction

Islamic edicts regarding organ donation. In addition, despite the fact that Malays are considered to be reluctant to donate organs they seem quite willing to receive organs. At least statistically speaking Malays are more likely to be allocated a kidney, compared to Chinese.27 In contrast, the alleged extraordinary willingness to donate organs among Chinese is flippantly attributed to the positive effect of Buddhist teaching regarding organ donation (Wong 2010: 1442). This, however, gives rise to the question as to why Buddhist teaching is so influential when it comes to organ donation, whereby most Chinese Malaysians are followers of Shenism. Thus, Daoist and Confucian ideas concerning transplantation, organ donation, and brain death should certainly be included in a thorough investigation. Existing data proves that Malaysians donate their organs extremely seldom upon death, indicating that transplantation, organ donation, and brain death are obviously subject to controversial debate among the Malaysian public. A substantial number of biomedical publications have analysed the attitude towards organ donation and to a lesser extend towards brain death among Malaysians. The following subchapter briefly highlights the decision-making process regarding organ donation and outlines the current state of healthcare research regarding the attitude of Malaysians towards organ donation and brain death.

1.6 O vervie w of H e althcare R ese arch concerning the A t titude of M al aysians towards O rgan D onation The decision-making process to become an organ donor upon death is complex and highly influenced by the attitude one has towards organ donation (Radecki and Jaccard 1997: 183). Therefore, it is not surprising that most publications 27 | During my fieldwork I gained the impression that the majority of Malaysians who were listed for a kidney were Malays and that most post mortem kidney transplants would go to the Malay population, as informal conversations and expert interviews pointed to those circumstances. A Malay medical informant pointed out: “[T]he Malays [...] they are the first recipients to receive cadaveric kidney. If we look [at] the data of the recipients of cadaveric kidney, the majority are Malays. Partly it is because there are so many of them going to dialysis, that they form the bigger group on the transplant waiting list. Therefore, they are more likely to be offered a cadaveric organ when they are on the waiting list.” (Interview with Dr. Niksham (M2), 17th September 2009: line 164ff.). To support my assumption I tried to consult statistical documents from the National Transplant Registry, which possesses records of the kidney waiting list inter alia according to ethnicity. They thought, however, this information was too sensitive and refused to release it.

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relating to transplantation in Malaysia have focused on the position of Malaysians towards organ donation. The attitude towards organ donation is strongly based on knowledge beliefs and personal beliefs. According to Radecki and Jaccard (1997: 185) and Irving et al. (2012a: 2530), knowledge beliefs include knowledge of the donation process itself and validity of brain death. Personal beliefs on the other hand, include cultural and religious beliefs, normative beliefs, altruistic beliefs, and body integrity (Radecki and Jaccard 1997: 185 and Irving et al. 2012a: 2528ff.). Cultural beliefs are meant to be those beliefs “that derive from the broader culture inherent in one’s ethnic group membership” and “[r]eligious beliefs are those … that are relevant to organ donation [and brain death] that derive from one’s own religious background and values” (Radecki and Jaccard 1997: 184). Normative beliefs, in the words of Radecki and Jaccard (1997: 185), are “perceptions about how significant others think about and evaluate organ donation”. This primarily includes what one’s family believes about organ donation, but may also include normative biomedical, political, or religious obligations. In the particular Malaysian case several political institutions and religious authorities have adopted a specific opinion about organ donation and disseminate their stance on a large scale. As already mentioned above, religious beliefs regarding transplantation and donation may either derive from one’s own religious interpretation or from external, normative sources which may not be compatible, thus creating great tension and anthropological problems to the individual. Altruistic beliefs “derive from affective responses towards others and are widely associated … with an increased willingness to donate” (Ibid). These include the idea, for example, that death has a positive element because another person benefits from functioning organs (Ibid). Body integrity refers to “beliefs about body wholeness in death unrelated to any religious stance” (Irving et al. 2012a: 2528); though in the Malaysian context beliefs about body wholeness and funeral rites often have a religious and/or cultural overtone. It is striking that research about the attitude of Malaysians towards post mortem organ donation and brain death has recently become increasingly important in the country, with more than half of the publications having emerged since my initial fieldwork in 2009 (Abidin et al. 2013, Loch et al. 2010, Wong 2010, Wong 2011, Tumin et al. 2013a, Tumin et al. 2013b and Tumin et al. 2013c).28 All studies have focused on the attitude towards organ donation, while three of them have included the inquiry of knowledge of brain death (Abidin et al. 2013, Loch et al. 2010 and Rozaidi, Sukro and Dan 2000). Of the publications, two studies have concentrated on the attitudes of healthcare professionals (Abidin et al. 2013 and Rozaidi, Sukro and Dan 2000), while the 28 | Between 1998 and 2014 twelve studies have dealt with the attitude of Malaysians towards post mortem organ donation.

1. Introduction

rest has focused on the wider mostly urban Malaysian population. The current state of research regarding the attitude of Malaysians towards organ donation and brain death is presented in chronological order in the following. One of the earliest studies from Lim et al. (1998) evaluated the attitude towards kidney donation among parents of schoolchildren in Kuala Lumpur. Back then, nearly 80% of parents were not prepared to donate a kidney. The main reasons quoted were the rejection of missing body parts after death and religious beliefs. Differences between ethnic groups were not evaluated, since Chinese were overrepresented in the study. In the year 2000, two studies were conducted: one by Chen et al. (2000) and another one by Rozaidi, Sukro, and Dan (2000). Chen et al. (2000) investigated reasons for the refusal to consent to organ donation at the University Hospital Kuala Lumpur over an eighteen-month period. Out of nineteen potential organ donors, two were turned down for medical reasons and four died before the family could be approached for the query of organ donation. Among the remaining thirteen potential donors, four consented to organ donation, five were reluctant to consider a donation, two died prior to consent, and another two declined donation because they feared pain during the explantation surgery (Ibid: 1809). Next to other reasons, Chen et al. (2000: 1810) quoted cultural beliefs and religious misinterpretations as the major impediments to the transplantation programme. The second study in that year was concerned with Malaysian healthcare professionals in the context of organ transplantation and included the issue of brain death. Rozaidi, Sukro, and Dan (2000) investigated the attitude of healthcare professionals towards brain death and deceased organ donation in two tertiary hospitals, whereby one hospital received formal training on both issues. Although 80% of the respondents supported the transplantation programme and deceased organ donation, only less than 50% were willing to donate their organs upon death (Ibid: 482). However, the study did not address the reasons for their reluctance to donate. Interestingly, only 8.5% of the healthcare personnel rejected the concept of brain death (Ibid: 480). Here the two main reasons quoted were insufficient scientific evidence for the concept (51%) and religious beliefs (30%), whereas the hospital with the higher percentage of Malay healthcare professionals quoted religious beliefs much more often (Ibid: 480f.). However, neither did the study evaluate differences between ethnic groups regarding the attitude towards organ donation or brain death nor did it inquire whether brain death was perceived as the person’s death. In 2005 and 2006 two studies followed which focused on the Malay population. The first study from Shaikh M. Salleh, Yang, and Awang (2005) evaluated the perception and attitudes towards organ donation among urban and rural Malay Muslims and found that only half of the respondents were prepared to donate an organ after death. Fear (56.3%) was identified as the

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strongest deterrent factor for Malays to reject organ donation, while religion alone only accounted for 5.2% of the study population (Ibid: 53). However, they did not identify the objects of their fear. The second study by Zakaria (2006) tested the effectiveness of an intervention in the form of providing information on organ donation to rural Malays in Perak. Though their knowledge towards organ donation had increased after the educational intervention, results regarding an altered attitude after the intervention were ambiguous (Ibid: v). In the beginning of the 2010s, three studies were published (Wong 2010, Wong 2011 and Loch et al. 2010). The first study used focus groups according to ethnic belonging and revealed ethnic differences in the perception of organ donation and transplantation, but failed to evaluate brain death (Wong 2010). Wong (2010: 1442f.) concluded that Malay Muslims were more sceptical towards organ donation, and more likely for Chinese Buddhists to state that their religion encouraged organ donation. The impact of Shenism, in other words the impact of Daoist and Confucian beliefs on the attitude towards organ donation and brain death, remained unclear. The second study from the same researcher was conducted as a crosssectional population-based and computer-assisted telephone survey with 1174 participants (Wong 2011). It addressed knowledge, attitudes, practices, and behaviours regarding deceased organ donation and transplantation but not brain death (Ibid: E24ff.). Though it investigated differences in willingness to donate organs with regard to ethnicity, it did not explore specific cultural and religious barriers to organ donation within the evaluated ethnic groups (Ibid: E27ff.). Furthermore, the study did not analyse Daoist aspects (Ibid: E26, E29). The third study of that year by Loch et al. (2010) recruited 904 relatives of patients in the emergency department of the University of Malaya Medical Centre in Kuala Lumpur and evaluated differences between ethnic groups regarding attitudes towards organ donation and knowledge about brain death. They found that 43.6% of the respondents would donate their organs, with Malays being less willing to donate organs compared to the Chinese study population (Ibid: 238, 241). Loch et al. (2010: 236) did not compare attitudes towards organ donation between Malaysians of different religious affiliations, and, hence, they did not discuss the impact of religious beliefs, namely Islam, Buddhism, or Shenism. Good knowledge of brainstem death was seldom (10.3%), but in their study appeared not to be associated with one’s attitudes towards post mortem donation, a finding which they acknowledged to be in contrast to other studies (Ibid: 238, 241). They concluded that both culturalreligious attitudes and a lack of trust in the medical system were the main reasons to reject a donation, but recommended a qualitative study to further examine religious beliefs within each ethnic group (Ibid: 236, 242). A further publication from the research group around Loch was published in 2013. Abidin et al. (2013) investigated the role of Malaysian healthcare

1. Introduction

professionals regarding the success of the Malaysian transplantation programme and included brain death in their research. Statistically, Chinese healthcare professionals were four times more likely to donate their organs compared to Malay healthcare professionals (Ibid: 188). The majority of healthcare personnel, in particular doctors, knew the concept of brain death and in this respect there was no statistical difference between Muslim healthcare personnel and health professionals of other religious faiths (Ibid: 189). The majority of healthcare personnel felt that religion should play a role in educating the public about organ donation and transplantation, which was especially evident among Muslim healthcare professionals (Ibid: 191). The three most recent publications came from a research group around Makmor Tumin. Their first publication investigated whether incentives would increase the post mortem organ donation rate in Malaysia. Here Tumin et al. (2013a: 318) concluded, a “non-fungible financial incentive could prove to [be] an attractive policy option to increase the organ donor pool in Malaysia”. A few months later, a further study from Tumin et al. (2013b: 208f.) revealed that Malaysians with a tertiary level of education were not hindered by religious and cultural factors, but rejected organ donation for a lack of information and a lack of trust in the medical system. Loch et al. (2010: 236, 242) had already concluded three years earlier that besides cultural-religious factors the lack of trust in the medical system was a major reason to reject organ donation. Now, Tumin et al. (2013b) replicated this finding for a very well educated Malaysian subpopulation. Their study, however, only included Malaysians from the four categorical religions Islam, Christianity, Buddhism, and Hinduism and omitted Daoist and Confucian beliefs concerning organ donation (Ibid: 208). Whereas their first article recommended incentives as a good tool to increase the organ donation rate upon death, some months later the same group of researchers changed their view on this matter. They now viewed financial incentives as the last resource to increase the donation rate and instead recommended to “target … the Muslim population” (Ibid: 675). The “key to Malaysia’s success or failure to increase [the] organ donation rate lies in its ability to persuade its Muslim population (its largest population) to donate organs” (Ibid: 671). To attain this goal, Tumin et al. (2013c: 675) proposed heavily involving Muslim doctors and local religious leaders and stated that religious and cultural aspects “are not significant determinants” for Malaysian Muslims to decline organ donation and that “Malaysian Muslims exhibit the same attitude towards organ donation regardless of [their] level of education”. This is in contrast to their previous publication, which stated that only for a very well educated Malaysian subpopulation religious and cultural factors were not the main cause to refuse organ donation (Tumin et al. 2013b: 207f.). In conclusion, previous publications held two factors accountable for the low organ donation rate in Malaysia: the majority of authors acknowledged

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cultural and religious beliefs as the major barrier to increasing the post mortem organ donation rate, while more recently, the lack of information and the lack of trust in the medical system have become a more prominent motive to refuse organ donation, at least for a highly educated subpopulation. The biomedical publications reviewed here have focused in a rather one-sided manner on the mostly negative attitudes of urban Malaysians to explain the failure of the transplantation system. Those publications thereby sidelined biomedical, political, and religious forces on the venture of transplantation and their connectivity to one another. Furthermore, existing studies have not adequately addressed underlying religious perceptions and practices that may be responsible for the reluctance to donate organs, neither for Islam or Buddhism, nor for the syncretic religion of Shenism. Thus the nature of those beliefs has yet to be analysed in depth. In addition, the concept of brain death and its relation to cultural and religious beliefs in the Malaysian context has been sidelined in previous works, even against the background that knowledge about brain death and its validity greatly influences the attitude towards donation upon death (Irving et al. 2012b: 1066, 1068). This piece of work does not focus on perceptions towards organ donation and brain death among Malaysians alone, it chooses a more comprehensive approach in that the assemblage of the Malaysian transplantation system as a nexus of biomedical agency, political governance, religious regimes, and the public sphere is presented. The following subchapter thus illustrates how I came to work on this project and outlines the fieldwork approach to delineate the formation and reformation of the global assemblage of the Malaysian transplantation system and its nascent anthropological problems.

1.7 F ieldwork As an exchange student, I had lived in a Chinese family and went to a public high school in Kuala Selangor for one year (1994-1995). During this time I gained access to both the Malay and Chinese lifeworlds – an experience, which proved to be indispensible for this project.29 When I returned to Hamburg, I commenced my academic studies in medicine and the cultures and languages of Austronesia. Throughout my professional medical training I slowly merged into the scientific world of clinical medicine and experimental research, 29 | One might wonder why this work excludes the Indian minority as they are the second largest group to donate organs upon death. This is due to the fact that my personal experience in the Indian community is severely limited and my Tamil language skills are non-existent. Nevertheless, during my fieldwork I met a Ph.D. candidate from Australia who focused on the perception of organ donation among rural Indians in Malaysia.

1. Introduction

spending hours on wards, in operating theatres, and in laboratories. During that time I first came into contact with transplantation medicine and intensive care medicine: in Sydney I assisted with my first living kidney donation, which was carried out between a married couple that seemed to be incredibly grateful to be given this treatment opportunity. At Yale, I performed my first clinical examination to establish the diagnosis of brain death and I vividly remember the relative of the young adolescent who approached me insecurely sharing his concern about the ambiguous signs of death. As an intern at a Singaporean hospital, I then got to know a middle-aged man who was suffering from a severe chronic liver infection which had been transmitted through a contaminated liver transplant. I came to learn that he, and most other transplant patients there, had purchased their livers commercially in China. The patient seemed exhausted by his long lasting and complicated course of the disease. With mournful eyes he admitted to have spent all his savings in the belief to be able to ‘live a normal life’ after the transplant. Far from it, he went on, with a weary smile, not able to hide the severe devastation that he had paid a fortune for his new liver that eventually failed to ‘work properly’. To him commercial organ transplantation was the only way, mentioning that he would more likely win the national lottery than receive a liver through the national waiting list. Informal talks with medical health personnel in Singapore and Malaysia further revealed that only a few had an aversion to commercial organ transplantation, as most stated that there would ‘just be no other choice’ than buying an organ. Thereupon I learned that Malaysia had a remarkably wellstructured organ transplantation programme that back then started to become the centre of political and public attention with increasing support from the Malaysian Ministry of Health. This was inter alia reflected by the fact that in September 2009 the Director General of Health was readily willing to issue a general permission for me to carry out interviews with experts from the Ministry of Health and its sub-agencies concerning transplantation issues. He wrote: “It is our view that the information gathered may assist us in our efforts to promote organ donation in Malaysia”. The permission included informal talks with staff from the National Transplant Resource Centre, bureaucrats from the Ministry located in Putrajaya and interviews with physicians who worked at government hospitals. Further informal discussions with physicians, nurses, patients, and friends in Singapore and Malaysia triggered my interest in how the undertaking of transplantation played out in the Malaysian setting. I commenced my project with a two-month fieldwork in 2009 and continued the research on site for another month in 2010 and briefly in 2014. In addition, several conversations were resumed during conferences and workshops in 2012 and 2014 in Germany. The fieldwork in Malaysia took place in various contexts. My research was located in urban Kuala Lumpur and rural Kuala Selangor; I moved in the realm of the Malay and Chinese lifeworlds; I acted within the

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biomedical, political, religious and public domain; and I moved from staunchly ‘official’ settings towards absolutely informal conversations in privacy. When I arrived in 2009, the National Transplant Resource Centre had just moved from a one-room booth at the University Hospital Kuala Lumpur to a spacious office located just opposite the showpiece of the National Heart Institute in the middle of bustling Kuala Lumpur, with the luxury of multiple conference rooms and offices including a reception area. The director of the National Transplant Resource Centre supported my project sustainably and offered me a workplace at the new office and introduced me to a number of people at the Ministry of Health and several medical professionals. It was at the National Transplant Resource Centre where many informal talks about the transplantation system, organ donation, and brain death were conducted and crucial procedural aspects brought to light. Broadly speaking, the research in the urban, more ‘official’ setting was determined by never-ending car rides, scheduled appointments, an oversized administrative government machinery at Putrajaya, sterile ambiances at gargantuan hospitals, time-consuming procedures and plenty of lively discussions about the topic. Here, I mainly moved in the professional domain of the biomedical, political, and religious sphere, interviewing physicians at private and government-run hospitals, talking to bureaucrats at government agencies, and interviewing high-ranking religious authorities. My other anchor point during my fieldwork was Kuala Selangor, a rather rural but well-connected region in the State of Selangor. The district of Kuala Selangor lies behind the industrial area of the Klang Valley and many commuters in and around Kuala Lumpur originally come from this area and regularly return to their family homes on site. From my many previous stays this was a familiar place to me. Here people recognised me on the streets from my school days and most were aware of the fact that I had graduated from medical school in the meantime. It was here, where my keluarga angkat, my Malaysian family, my partner, and our two children (back then three years and 10 months) settled for the time being. Conducting this research while being together with my family greatly supported this enterprise. Being a mother and wife made me ‘the average woman from next door’ and with my partner and children being around many of the invisible cultural boundaries naturally receded. The embedment of us as a family in the local community greatly contributed to a complaisant research environment. Through the pre-existing dense social network, multiple starting points for my research opened up. Here in the rural setting, acquired information and encountered cooperation was more coincidental and ‘unofficial’ in a sense, as private life and work met constantly and merged into one another. I should note that this private network was essential in gaining access to genuine and authentic information from the rural population concerning sensitive issues like transplantation, donation, and death.

1. Introduction

To increase the participation of the local community for my study I visited my former school, talked to teachers and local civil servants about my project, held an assembly speech at a local school and conducted a Q&A session with pupils on personal development, which was initiated through a former teacher. Broadly speaking, the research in the rural, ‘unofficial’ setting was determined by unforeseen encounters at the kopitiam, the coffee shop around the corner, at a neighbour’s house or at the market place and at the local district mosque and around a number of smaller temples that I had visited previously for various occasions. Here, I mainly moved as a private person in the more ‘unprofessional’ domain of the public and religious sphere, overseeing interviews with the rural Malay and Chinese population and interviewing local religious authorities. Contacts with bureaucrats from district agencies were rare but, if needed, I was in the advantageous position to use short official channels. In this research setting interesting insights into the people’s perception towards organ donation and brain death evolved from many informal lively conversations on the topic. It was here that the fieldwork diary used to record certain dates and situations, recollect specific events and note particular thoughts was especially important. Accounts in the diary were often supplemented with information from the Internet and, as the project progressed, social media like Facebook became increasingly important in both the unofficial, rural and the urban, more professional setting. I should highlight that my relationships to the Malay and Chinese spheres were fairly separated from one another. This means that encounters with interlocutors took place either in the Malay or in the Chinese world and hardly ever overlapped. This was especially evident within the religious and the political domain. Here, in the Muslim sphere, I encountered Malay people, whereas Chinese Malaysians made up the Buddhist and Shenist field. In the political domain I exclusively encountered Malay bureaucrats and here the common language used was Malay. In contrast, the biomedical sphere was least affected by the segregation of ethnic belonging. This was especially true for governmentrun hospitals, where Malay and Chinese healthcare professionals often worked in mixed teams, thus English, the language of science, was the habitual medium to communicate. The team of the National Transplant Resource Centre, which can be considered an intersection between the biomedical and the government domain, consisted of Malay professionals with few exceptions, but language wise Malay and to a large extent English was spoken. I gained access to the different spheres of living constituting the assemblage of the Malaysian transplantation system by speaking the Malay language, bits and pieces of Chinese dialects, and being fluent in Manglish and English.30 30 | Manglish is an English-based creole informally and commonly spoken on the streets in Malaysia.

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Through my intimate experience of living in Malaysia, I had learned to behave in a culturally respectful way and was able to act appropriately in the various research settings – be it urban or rural locations, the Malay or Chinese lifeworlds, official or unofficial settings, or the different spheres of living such as the biomedical, political, religious or public domain. As with most Malaysians, I had acquired the ability to switch language and behavioural pattern depending on my counterpart’s background and sphere of life. In order to capture a more comprehensive and holistic portrayal of the Malaysian venture of transplantation, both a qualitative and a quantitative strategy was chosen, whereby the two study approaches were pursued independently of one another, but valued as equally important. Qualitative and quantitative approaches become relevant in different periods of the research process (Flick 2010: 44). In a first step, physicians in transplantation medicine were interviewed in depth about attitudes of Malaysians towards organ donation and brain death in a qualitative manner. In a second step, a sample of the rural Malay and Chinese population was interrogated about their perceptions towards organ donation and brain death using a questionnaire-based survey of quantitative nature. In addition, one local religious leader from each ethnic group was interviewed in depth to supplement the findings from the survey. Simultaneously, in-depth interviews with high-ranking religious authorities from Islam, Buddhism, and Daoism completed the qualitative part of the research. The qualitative and quantitative approaches are described consecutively.

1.7.1 Qualitative in-depth Inter views with Medical and Religious E xperts Guideline-based expert interviews are viewed as being particularly useful for the exploration of the interviewee’s own ideas regarding transplantation, organ donation and brain death (Flick 2010: 194). Experts were defined as persons with specialist knowledge about organ donation (transplant physicians) or persons with specialist knowledge in the religious field (religious leaders in Buddhism, Islam and Daoism) (Ibid: 214f.). Guideline-based interviews were conducted between September and October 2009 and in May 2010 in George Town (Penang), Kuala Lumpur, Kuala Selangor (Selangor), and Taiping (Perak). The participants decided on where they wanted to be interviewed to ensure that they felt at ease. Hence, interviews were mainly held in the offices or participants’ places of worship. All interviews were conducted in English with the exception of two interviews; one was conducted in Malay and one in Mandarin using an interpreter (Mandarin– English). Medical doctors and Chinese interlocutors preferred English over Malay, which is the reason I conducted most interviews in English. The interview guideline consisted of three parts. Part A addressed the interviewee’s career and current occupation, and the institution he or she worked

1. Introduction

for. The main purpose of these questions was to make the interviewee feel at ease and to create a confiding atmosphere, while obtaining information about the interviewee’s biography. Part B comprised questions about the interviewee’s personal experience with organ donation. During this part the interviewees were encouraged to speak freely. Part C should elicit a personal hypothesis on if and why organ donation behaviour would be different between ethnic groups. As data collection and analysis were an iterative processes (Pope, Ziebland and Mays 2000: 114), part C later on also included questions on body concepts and attitudes towards certain organs and tissues, as well as queries about brain death and death. The guideline was adapted for each group of interviewees (i.e. experts in transplantation medicine, Islam, Buddhism, and Daoism) to customise it to their special focus and ensure a more in-depth exploration. Medical doctors were seen as experts in that their profession enabled them to share their experience gained with patients in transplantation medicine, and religious scholars were a source for expertise for their embodied faith and questions about faith relating to organ donation and brain death. To protect their confidentiality all interviewees were assigned a pseudonym. Five medical doctors, namely Dr. Hafiz (M1), Dr. Niksham (M2), Dr. Leong (M3), Dr. Chong (M4) and Dr. Eng (M5), who have been active in transplantation medicine for a long time, were interviewed to explore their experience with potential organ donors, recipients, and their families. Special attention was paid to the question whether experience with Malay and Chinese patients differed, and if so, in what way. To gain knowledge about religious aspects in reaching a decision regarding organ donation, high-ranking religious scholars were interviewed apriori. The scholars with a nationwide reputation consisted of five Muslim scholars, namely Mr. Syed (I1), Mr. Zulkifli (I2), Mr. Hakim (I3), Mufti Faizal (I5), and Mrs. Suraya (I6), five Buddhist scholars, namely Ven. Asoka (B1), Mrs. Tee (B2), Ven. Lim (B3), Ven. Puah (B4), and Mr. Tong (B5), and one Daoist scholar, Mr. Chiew (D2). High-ranking religious scholars were either intentionally interviewed because they were professionally involved in organ donation (I1, I2, I6, B1, B2, B5) or were explicitly visited because they have never dealt with organ donation or transplantation prior to the interview (I3, I5, B3, B4, D2). During the course of the study a striking discrepancy between the official religious opinion and the behaviour regarding organ donation in rural areas became obvious. Therefore, local religious leaders who had never professionally dealt with organ donation or transplantation prior to the interview were explicitly visited to complete the picture of the rural community with the views of local religious leaders. The two local scholars were Imam Sharul (I4) for the Malay community and Abbot Yap (D1) who represented the Chinese community. In addition, a journalist, a transplant recipient patient, and a former transplant coordinator were interviewed in-depth to gain more detailed information on structural elements concerning the transplantation issue and

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cover the different political perspectives on the issue of organ donation and transplantation. As these people require a special level of protection, their interviews are not stated in the annex and hereinafter they are referred to as Journalist Ng (interview was held on 28th September 2009), Patient Wong, (interview from 15th September 2009) and Coordinator Saravanan (interview from 24th September 2009). Beyond viewing all interviewees as experts in their respective field, the interviewee’s private identity was relevant in that they identified themselves as Malay (M1-M2, I1-I6) or Chinese (M3-M5, B1-B5, D1-D2) Malaysians. In fact their personal identity – being Malay or Chinese – led to comments from the private sphere that contributed to the construction of certain explanatory patterns. Nohl (2009: 62) writes that experts should be seen as the ‘Gesamtperson’, the whole person, not only as someone who provides organisational and institutional context. He adds that certain explanatory patterns derive not only from the professional context, but can be constructed through comments from the private sphere (Ibid). Knowledge conveyed from an expert interview can be divided into habitual-atheoretical and communicative-theoretical knowledge (Ibid: 48ff.). Habitual-atheoretical knowledge is implicit knowledge that the informant is not necessarily aware of and becomes accessible in the interview through narratives, story telling, and descriptions. Communicative-theoretical knowledge, on the other hand, becomes accessible through reasoning and evaluation of the interviewee making motives and causes of one’s action plausible to the interviewer (Ibid: 49). In this study, communicative-theoretical knowledge was often acquired through the professional background of the interviewee, whereas habitual-atheoretical knowledge was more likely acquired through narratives from the private sphere. During the recruiting process it was stressed that the study did not attempt to evaluate the knowledge about organ donation, but rather focused on how organ donation and the concept of brain death were perceived in different social contexts. Initially, medical experts, who had published articles about organ donation in the Malaysian context in international and Malaysian medical journals, had been contacted by email. In addition, three medical societies in Malaysia (Malaysian Society of Transplantation, Malaysian Society of Nephrology, and Malaysian Liver Foundation) and the National Transplant Registry and National Transplant Resource Centre were searched via the Internet, and certain employees of the organisations were approached through email. Furthermore, doctors in hospitals with a transplant programme were contacted directly by email. My pivotal contact, one can say in retrospect, was an email reply from the director of the National Transplant Resource Centre. Later, medical experts were recruited through personal contacts through the National Transplant Resource Centre, which was in close contact to medical personnel in the field of organ transplantation as well as to some religious

1. Introduction

bodies. Interestingly, I experienced a few times that contacts to potential informants were established through both networks, private contacts that emerged in Kuala Selangor and professional contacts through the National Transplant Resource Centre. Analogous to medical experts, religious leaders were firstly searched for on the websites of institutions such as IKIM (Institut Kefahaman Islam Malaysia, Institute of Islamic Understanding Malaysia), JAKIM (Jabatan Kemajuan Islam Malaysia, Department of Islamic Development Malaysia) and YBAM (Young Buddhist Association of Malaysia). Religious experts were initially searched for at a national level, though it turned out very difficult to find any Daoist official who could give an interview on organ donation. As the discrepancy between high-ranking religious authorities and the rural community became apparent, local religious leader were interviewed during the second phase of the fieldwork. Religious experts were mainly recruited through personal contacts and those obtained through the National Transplant Resource Centre. Later during the fieldwork, contacts were also made through middlemen. The entire recruitment process of medical physicians and religious leaders is outlined in Figure 1.

Figure 1: Recruitment process of experts for guideline-orientated interviews31

31 | Experts in transplantation medicine (M1-M5) were mainly recruited through the National Transplant Resource Centre (NTRC); one was recruited by email. Experts in

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Informants were approached with the request to give an interview about the attitude of Malaysians towards organ donation and provide information on different perceptions between Malay and Chinese Malaysians with regard to organ donation. Once participants had agreed to be interviewed, permission to conduct the interview was obtained in writing from the employer of each interviewee.32 General information about the study was provided to the interviewee by email or post. One interviewee requested to see the questions prior to the interview. Written informed consent, assuring the anonymity of the respondent in the collection, analysis, and presentation of the study was based on the ethics code of the German Sociological Association (Deutsche Gesellschaft für Soziologie) and the Professional Association of German Sociologists (Berufsverband Deutscher Soziologen) and obtained from all participants prior to the interview. Guideline-based interviews took between 30 and 85 minutes, with an average duration of 45 minutes, and were recorded and transcribed verbatim in digital form in English (for detailed transcription rules see table 1).33 The Malay interview was transcribed verbatim in Malay and subsequently translated into English. Transcripts were sent to the interviewees as a procedure to improve reliability of the study. Only a few of them made use of adding further information. Notes taken by me during the interview supplemented the recording, gleaning further details from the interview. A recollection protocol recorded details relating to the interviewee and the interview situation (i.e. the manner in which each interview was realised, description of the concrete marginal conditions, the atmosphere during the interview, comments on the course of the conversation and a note on the conversation prior to and after the actual interview) and was completed immediately after the interview.

Islam (I1-I6) were selected through the NTRC, through personal contact, and through email. Two of the interviews were the results of multiple contacts (I5 and I6). Experts in Buddhism (B1-B5) were recruited through the NTRC only. Experts in Daoism (D1-D2) were recruited through the NTRC and personal contacts. 32 | General permission to carry out interviews from the Ministry of Health only included the Ministry of Health and its sub-agencies. For all other interviews individual permission from the respective employer was acquired prior to the interview, including, for example, private hospitals or publishing companies. 33 | For complete interview transcripts please refer to the web-based appendices under http://www.transcript-verlag.de/978-3-8376-3702-1/.

1. Introduction Transcription rules

Examples

Interviewer

I

Interviewees

Medical doctors

M1, M2, M3, M4, M5

Islamic scholars

I1, I2, I3, I4, I5, I6

Buddhist scholars

B1, B2, B3, B4, B5

Daoist scholars

D1, D2

When more than one interviewee was present interviewees were consecutively identified with small letters. The translator was indentified with the letter “t”. Abbreviations were spelled out the first time they appeared in each interview. When strong emphasis was made on a word or phrase it was underlined. Obtrusive laughter was indicated with @. Incomprehensible wording was indicated with a question mark in square brackets. Language other than English (i.e. Malay, Chinese, and German) was put in italics. Translation or further explanation of non-English wording was put in square brackets. Supplementary non-verbal information was put in italics in brackets. Pause Premature termination of sentences was indicated with a hyphen. Deleted parts to preserve anonymity were indicated with three points in square brackets. Anonymised parts were put in square brackets.

I4, I4b, I4c B3t IPR (Institut Perubatan Respiratori, Institute of Respiratory Medicine) They have to ask for consent. @ I also don’t know yet. It includes haemodialysis, [?] transplantation. kuthbah jumaat kuthbah jumaat [Friday prayer] (Interrupted by colleague) … Around ten years ago- after the campaign […] [Australian City 1]

Table 1: Transcription rules All informants knew that I was a medical doctor and were informally given the information that I had lived and received schooling in Malaysia for one year when I was a teenager. With medical experts an empathetic relationship was quickly established, in particular because the interviewee and I spoke the same ‘medical language’. With religious scholars establishing an empathetic working relationship was somewhat more challenging. Here a positive binding was more likely established by gently and implicitly showing cultural sensitivity (adhering

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to correct forms of etiquette, bringing my own local knowledge into the conversation, being accompanied by a chaperone or wearing a headscarf to name just a few). As a result, the most productive interview segments emerged slowly during the later course of the interview. Especially religious leaders saw me as a Western medical doctor who – in their view without doubt – would support organ donation. Building trust between the interviewee and reassuring them that I was not judgemental about a certain opinion but instead interested in why a particular notion was supported, slowly enabled the interviewees to speak their view and begin to narrate freely. Having said this, it is essential to point out that informants do not narrate reality, but always their experience (Nohl 2009: 48). For a qualitative data analysis, the transcripts were imported into the MAXQDA programme (Version 10 for Windows). This programme was used to organise and analyse data and to select the most representative verbatim statements. The qualitative data analysis was guided by the methods described by Udo Kuckartz (2010). Interviews were read and reread several times to identify index themes. In a first explorative and inductive attempt thematic entities that emerged from the data were identified. These entities presented broad units, for which interim categories were created. For each unit two to six terms were identified and searched for with the lexical search function (i.e. terms searched for death were: death, dying, die, pass away, dead body and corpse as well as mati and meninggal). During this process new categories were created and a constant comparison in which each text fragment was checked or compared with the rest of the data established the interim categories. In this first step, multiple categories were added to reflect as many of the nuances in the data as possible, which created a large number of rather diffuse categories. In a second step, iterative revision of the text further refined and reduced the categories in number by grouping them together and/or creating subcategories. By developing subcategories the characteristics of each category were carved out. All text fragments of the same category were compared and text segments were allocated into subcategories. During this process analytical and theoretical ideas were developed, and while few new categories were added, many were omitted. In a third step, the transcripts were looked through line by line, in order not to miss statements that were not found with the lexical search function during the first step. By this time, I had gained an intimate knowledge of the data, which led to a novel arrangement of categories and subcategories and data was eventually re-organised into ten superior categories: (1) cultural identity, (2) socio-demographic factors, (3) Muslim, Buddhist and Daoist beliefs, (4) the role of the family, (5) therapeutic options for end-stage organ failure, (6) attitudes towards certain organs, (7) attitudes towards the dead body, (8) emotional issues, (9) awareness of organ donation and measures to increase the organ donation rate, and (10) brain death. Further subcategories were added to all superior categories, in particular to examine certain statements in view of

1. Introduction

being in favour of or being against organ donation. In a final step all allocated text fragments were checked whether they truly belonged to the allocated category. Through contrasting comparisons of text fragments similarities and differences for the following broader themes were worked out: Malay versus Chinese lifeworld; Islam versus Buddhism versus Daoism; local public discourse versus official religio-political discourse; biomedical view versus religio-political view versus public view. Under these themes, peculiarities of single cases and relevant commonalities of themes were developed. Due to the limited manpower of this study, the analysis of the data was performed by the author only. However, the outcome (categories, subcategories) was discussed continuously with colleagues who had either a medical or cultural studies background. The categories, on the one hand, include what was told and on the other hand cover how a specific topic was told – meaning in what way a reported story was constructed or against what framework a problem was dealt with. The presentation of the interview material runs like a common theme through all the chapters. At this point I will briefly present the sociodemographic characteristics of 18 interviewees, whereby the details of Journalist Ng, Patient Wong, and Coordinator Saravanan will be withheld for reasons of confidentiality. The interviewees were between 34 and 64 years old (average age 49.8), of whom 16 were male and two were female (Table 2). The ethnic distribution of the participants was eight Malays, nine Chinese, and one Sinhalese (Table 2).34 The religious affiliation was self-ascribed, i.e. interviewees were asked to state their religion according to what they most felt they belong to, regardless of the religious entry in their identity card. All Malay participants stated to be adherents of Islam (Table 2). Chinese participants were adherents of Buddhism (7), Daoism (1), and Christianity (1), and the Sinhalese interviewee was a Buddhist (Table 2). One scholar claimed to belong to Buddhism and Daoism and if religious affiliation here is determined through external ascription, then this scholar would be described as a Shenist (Table 2). The current occupation of participants was as follows: Medical experts were consultant physicians in government-run or private hospitals (Table 2). Religious experts were either professional or lay religious scholars and when they acted as lay religious authorities they frequently had a second occupation. They were, for example, religious authorities at a mosque or temple and at the same time worked as an insurance agent. As the religious profession was of primary interest and in order to protect the interviewee’s identity, only their religious occupation or position was recorded (Table 2). Muslim scholars worked at Islamic institutions, either managed by the government or run by non-government organisations (Table 2). Buddhist and Daoist scholars worked 34 | The Sinhalese people are the majority population of Sri Lanka and are predominantly Theravada Buddhists.

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at non-government Buddhist or Daoist associations and temples, while one Buddhist expert had worked for the government in the past (Table 2). Socio-demographic characteristics of the interviewees

Age in 2010

Gender

Ethnicity

Self-ascribed religious affiliation

Religious occupation or position

Dr. Hafiz (M1)

50

male

Malay

Islam

Consultant physician

Dr. Niksham (M2)

60

male

Malay

Islam

Consultant physician

Dr. Leong (M3)

51

male

Chinese

Buddhism

Consultant physician

Dr. Chong (M4)

48

male

Chinese

Buddhism

Consultant physician

Dr. Eng (M5)

45

male

Chinese

Christianity

Consultant physician

Mr. Syed (I1)

34

male

Malay

Islam

Executive director

Mr. Zulkifli (I2)

45

male

Malay

Islam

Fellow researcher

Mr. Hakim (I3)

57

male

Malay

Islam

Associate professor

Imam Sharul (I4)

41

male

Malay

Islam

Former district Imam

Mufti Faizal (I5)

59

male

Malay

Islam

State Mufti

Mrs. Suraya (I6)

42

female

Malay

Islam

Associate professor

Ven. Asoka (B1)

57

male

Sinhalese

Buddhism

Chief High Priest

Mrs. Tee (B2)

34

female

Chinese

Buddhism

Deputy secretary general

Buddhist Ven. Lim (B3) experts

55

male

Chinese

Buddhism

Buddhist consultant

Ven. Puah (B4)

54

male

Chinese

Buddhism

Chief abbot

Mr. Tong (B5)

64

male

Chinese

Buddhism

Chairman

Abbot Yap (D1)

54

male

Chinese

Daoism and Buddhism

Committee member of a district temple

Mr. Chiew (D2)

47

male

Chinese

Daoism

Chief executive director

Medical experts

Islam experts

Daoist experts

Table 2: Socio-demographic characteristics of 18 interviewees

1. Introduction

1.7.2 Quantitative Sur vey among the Rural Malay and Chinese Communities The questionnaire for the quantitative survey was developed in 2009 in cooperation with the Department of Medical Sociology and Health Economics of the University Medical Centre Hamburg-Eppendorf. Previous studies that identified attitudes towards organ donation in Germany, Austria, Switzerland, and the United Kingdom were employed as a guideline to develop the particular questionnaire for the Malaysian population (Jindal, Joseph and Baines 2003 and Strenge et al. 2000). The first version was designed in German and pretested on 15 people, all of whom had either considerable cultural knowledge about Malaysia or had experience in developing questionnaires. Subsequently the questionnaire was translated into English and Malay and further revised locally in cooperation with the National Transplant Resource Centre in Kuala Lumpur and the Health Education Division of the Ministry of Health in Putrajaya. Thereafter the English and Malay version of the questionnaire was pretested on 20 Malay and 23 Chinese Malaysians. Participants were recruited through two local companies in Kuala Lumpur and the Klang Valley. All Malay participants chose Malay questionnaires, whereas only 10 Chinese participants chose the Malay version and 13 decided to complete the English version. The average completion time was 30 minutes and the respondents commented that the questions were easily understood. The questionnaire consisted of 39 structured questions and five open-ended questions, and was divided into eight parts. The first part comprised sociodemographic details (6 items), the second part investigated the respondent’s experience with and practices on organ donation and transplantation (6 items), while the third part addressed knowledge about organ donation and transplantation in Malaysia and legal conditions relating to these (6 items). The fourth part treated personal attitudes towards organ donation and transplantation (10 items), the fifth part investigated attitudes towards certain organs, the body, and the corpse (5 items), and the sixth part addressed religious aspects on organ donation and transplantation (5 items). The seventh part focused on the role of the family in the organ donation process (2 items), and the last part treated knowledge, attitude, and religious aspects on brain death (4 items). Participants were included through an electronic property registry (Senarai Nilaian Harta Tetap) from the District Council (Majlis Daerah) of Kuala Selangor in 2009. The property registry comprised 8,823 entries in the district of Kuala Selangor. Because the registry provided no information on ethnic background, ethnicity was assessed on the basis of names. 403 Malay and 403 Chinese names with their corresponding addresses were randomly chosen out of the list. Entries that stated no name at all, a company’s name, or an incomplete address were discarded.

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To influence participants least and due to restricted resources, a postal survey was initially favoured as the best approach to obtain data. The questionnaire was sent out by post to the chosen 806 households (403 Malay and 403 Chinese) in October 2009. Within each household one person above 18 years was invited to complete the questionnaire. To ensure participants were randomly selected within the household, the last-birthday method was applied where the person who had his or her birthday most recently was asked to complete the questionnaire (Bortz and Döring 2006: 242). A clearly laid out instruction on how to complete the questionnaire, a stamped reply envelope as well as a voucher for a hot drink in a nearby coffee shop was enclosed to reassure a high return rate. However, after five months the return rate was particularly low (33 completed questionnaires), so that the method on how to collect data for a quantitative evaluation had to be revised. In an elaborate discussion with members of the National Transplant Resource Centre, the Health Education Division of the Ministry of Health and the District Council of Kuala Selangor a more personal approach was seen to gain a higher response rate in this particular setting. After having consulted the Department of Languages and Cultures of Southeast Asia, University of Hamburg, and the Department of Medical Sociology and Health Economics of the University Medical Centre Hamburg-Eppendorf, face-to-face interviews were considered the most effective approach that could be implemented given the limited financial and personal resources of this project. Therefore, in March 2010 a follow-up letter to 785 (392 Malay and 393 Chinese) households was sent asking the potential participants to return the questionnaire by post and, at the same time, informing them that we would like to carry out face-to-face interviews at their homes. Contact details were provided in the letter to give the opportunity to decline our visit. One person declined the visit; two individuals participated by posting their completed questionnaires back. For face-to-face interviews, the questionnaire was slightly changed in its layout, and three coloured papers were used as illustrative material to support selected questions. 206 (89 Malay and 126 Chinese) face-to-face interviews were conducted in May 2010 from households that had been contacted twice before (through postal survey and follow-up letter). For face-to-face interviews a team of 16 multi-ethnic native interviewers were recruited through personal contacts in Kuala Selangor. Interviewers were Malay or Chinese (Mandarin or Hokkien) native speakers who spoke reasonable English. Most importantly all interviewers were local people from Kuala Selangor. The fact that the interviewers were part of the population under investigation assured a high participation within the community through personal connections to the neighbourhood, extended families, and friends. In addition, participants received an incentive for the completion of an interview. Incentives were small souvenirs from Hamburg and local food. Interviewers were given a questionnaire set (comprising of an

1. Introduction

interviewer identity card, questionnaires, an address list as well as both letters that the potential participants had received earlier). Additionally, interviewers were given detailed instructions on how to carry out the interviews. This instruction was especially designed for this particular context and based on the book from Noelle-Neumann and Petersen (2005). As the quality of the results is very much dependent on the interviewer, interview training was crucial. Interviewers were trained in groups of two to four people. General information about the study and more detailed knowledge about conducting an interview were given to the interviewers. The questionnaire was explained accurately, and different ways on how one can inadvertently bias the results were highlighted. Care was taken to elucidate the importance of the sampling process. To practise, all interviewers took part in at least one roleplaying interview. The interview process was rehearsed and interviewers were closely followed up, i.e. interviewers were talked to on a daily basis to discuss difficulties or arising problems. In rare cases, especially at the beginning, I attended interviews myself.35 Interviewers were paid 20 RM$ per completed questionnaire and could choose their preferred area to obtain interviews, as address lists were sorted by sub-districts.36 In most cases, interviewers chose sub-districts where they themselves or most of their family members lived. The interviews were conducted at the interviewee’s home. Initially, interviewers applied the last-birthday method, so that participants were randomly selected within the household. However, soon all interviewers stated that it was too difficult to ask for a specific person to be interviewed within the household: The first reason stated was that it was challenging to identify who of the encountered at a particular household was a permanent resident and who was a temporary visitor. Malaysian family members frequently live temporarily in varying households of the extended family. Secondly interviewers stated that they appreciated to have been let in and felt that asking for a specific person to conduct the interview was taking advantage of the interviewee’s hospitality. Hence, interviewers were asked to assess the situation themselves and were allowed to decide themselves whether or not to apply the birthday method. Each interviewer was assigned to interview respondents of the same ethnic group as themselves to reduce cultural barriers and to enable participants 35 | At the beginning of the face-to-face interviews, one person was accidentally interviewed by a local interviewer and myself. That interview exemplarily demonstrated that this sensitive topic triggered socially desirable answers. The interview conducted by me revealed the interviewee as person who was more or less in favour of organ donation, while the interview conducted with the local interviewer revealed a more sceptical stance towards organ donation. This incident clearly highlighted the importance of local interviewers and high-quality interview training. 36 | At the time of the fieldwork 20 RM$ equalled about 5 €.

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to feel at ease in expressing themselves. To minimise language problems, all interviews were carried out in the interviewees’ native language (Malay, Mandarin, Hokkien or rarely Javanese). Since the questionnaire was only available in Malay or English, two Chinese interviewers translated the questionnaire into Mandarin and orally into Hokkien. The remaining Chinese interviewers adopted this translation to ensure questions were asked in the same manner. The interviewer, based on what the respondent said, completed the questionnaire. Informed consent was obtained verbally. Respondents were assured that their responses would be confidential and reminded them that their participation in the interview was voluntarily. Altogether, 206 households were approached which resulted in 157 completed questionnaires, hence a total (postal survey and face-to-face interviews) of 192 (97 Malay and 95 Chinese) completed questionnaires. The above approach ensured a high participation among the local community and at the same time met the high standards of a quantitative research project (i.e. random sampling). The entire recruitment process is presented in Figure 2.

Figure 2: Recruitment for the quantitative survey of rural Malay and Chinese Malaysians in Kuala Selangor For statistical evaluation, questionnaires from postal and face-to-face interviews were considered to be equal, hence a total of 192 questionnaires was analysed. Answers that were illegible, not clearly translated, and/or bore no relation were evaluated as invalid. In a first step, the data of the five open-ended questions was analysed in a descriptive and interpretative manner. Coding began with

1. Introduction

identifying broad conceptual themes and grouping them into major categories and subcategories while care was taken that developed categories had a logical continuation. Answers that were difficult or impossible to categorise were put in a residual category called ‘others’, which did not contain more than 5% of the answers obtained. The same data was coded at various points in time to ensure the consistency and reliability of coding. In a second step the data was evaluated statistically. Ordinally and nominally, scaled values were displayed in absolute and percent frequencies. Two of each of these values were compared in contingency tables and tested for dependence with the chi-square test. If the expected frequencies turned out to be too small, Fisher’s exact test was used. Ordinal variables were tested for dependence with the chi-squared test for linear trend. The tests were double-sided with a significance level of 5%. Statistical calculations were done with SPSS Statistics 20 (SPSS Inc. an IBM Company, Chicago, IL). Statistical analysis was performed to search for significant differences between ethnic belonging (Malay and Chinese) and where appropriate between religious affiliations (Islam, Buddhism, and Daoism). This quantitative approach is of an explorative nature in that it aims to give an overview on where significant differences between ethnicity and religious belonging can be found and assumptions on the general Malaysian population cannot be made. Data from the quantitative survey is primarily presented in chapter three. At this point, I briefly describe the socio-demographic characteristics of the study population. Altogether, 192 respondents were included in the study. Participants were between 18 and 75 years old (average age 38.5), of whom 75 (39.5%) were male, and 115 (60.5%) female (Table 3).37 The ethnic distribution of participants was 97 (50.5%) Malays and 95 (49.5%) Chinese (Table 3).38 The self-ascribed religious distribution was 50.5% Islam, 19.3% Buddhism, 28.1% Daoism, 1.0% Christianity, and 1.0% denied a religious affiliation (Table 3). Participants were asked to state their religion according to what they most felt they belonged to, independent from their official religious entry in their identity card. A highly significant association between religious affiliation and ethnicity was detected (p