Socio-Economics of Personalized Medicine in Asia
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Socio-economics of Personalized Medicine in Asia The second decade of the twenty-first century has witnessed a surging interest in personalized medicine with the concomitant promise to enable more precise diagnosis and treatment of disease and illness, based upon an individual’s unique genetic makeup. In this book, my goal is to contribute to a growing body of literature on per- sonalized medicine by tracing and analyzing how this field has blossomed in Asia. In so doing, I aim to illustrate how various social and economic forces shape the co-production of science and social order in global contexts. This book shows that there are inextricable transnational linkages between developing and devel- oped countries and also provides a theoretically guided and empirically grounded understanding of the formation and usage of particular racial and ethnic human taxonomies in local, national and transnational settings. Shirley Sun is an Associate Professor of Sociology at Nanyang Technological University (NTU), Singapore. Her main research interests are population stud- ies, social inequalities, citizenship and immigration, economic development and social reproduction, and science, technology, and society. Routledge Studies in the Sociology of Health and Illness Available titles include: Bodily Exchanges, Bioethics and Border Crossing Perspectives on Giving, Selling and Sharing Bodies Edited by Erik Malmqvist and Kristin Zeiler Institutionalizing Assisted Reproductive Technologies The Role of Science, Professionalism and Regulatory Control Alexander Styhre and Rebecka Arman Assisted Reproductive Technologies in the Global South and North Issues, Challenges and the Future Edited by Virginie Rozée and Sayeed Unisa Socio-economics of Personalized Medicine in Asia Shirley Sun Forthcoming titles: Vaginal Examination in Labour Challenging contemporary practice Mary Stewart Transnationalising Reproduction Third Party Conception in a Globalised World Edited by Roisin Ryan Flood and Jenny Gunnarsson Payne The Social Determinants of Male Health John MacDonald Fathering Children with Autism Needs, Practices and Service Use Carol Potter Socio-economics of Personalized Medicine in Asia Shirley Sun First published 2017 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 711 Third Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2017 Shirley Sun The right of Shirley Sun to be identified as author of this work has been asserted by her in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-in-Publication Data Names: Sun, Shirley, author. Title: Socio-economics of personalized medicine in Asia / by Shirley Sun. Description: New York : Routledge, 2017. | Series: Routledge studies in the sociology of health and illness | Includes bibliographical references and index. Identifiers: LCCN 2016005951 Subjects: LCSH: Personalized medicine—Social aspects—Asia. | Personalized medicine—Economic aspects—Asia. | Social medicine—Asia. | Medical economics—Asia. Classification: LCC RA525. S86 2017 | DDC 362.1095—dc23 LC record available at http://lccn.loc.gov/2016005951 ISBN: 978-1-138-93383-5 (hbk) ISBN: 978-1-315-53717-7 (ebk) Typeset in Galliard by Apex CoVantage, LLC For Alexander and Troy This page intentionally left blank Contents Acknowledgments xi 1 Introduction 1 Personalized medicine and population-based research and development 1 What is a population? Race and genetics in North America 2 Personalized medicine, pharmacogenomics, and pharmacoethnicity 4 Why Asia? 6 Time, space, and the emergent other 6 Genomics in Asia and the unfolding dynamics of othering 8 Current research infrastructure and development concerning personalized medicine in Asia 10 Existing social-science studies of science and medicine performed in Asia 13 The illuminating question could be, when are you from? 14 What is at stake when populations are ethnically or racially labeled? 15 Chapter outline 16 2 Regionalism and the study of human genetic variation in a transnational context: Asianism, nationalism, and the racialization of ethnicity 25 Introduction 25 The fundamental question of, when are you from? 26 Once upon a time: the unfolding character of the “Japanese” category 27 Effects of Japanese colonialism and regional integration on the notion of “Japanese” 28 viii Contents Resisting being “othered”: scientists in Asia define “Asian” genome diversity 31 Ethnicity as a proxy for genetic diversity and the molecularization of ethnicities in Asia 35 Conclusion 41 3 Capitalizing on being “othered”: precision medicine and race in the context of a globalized pharmaceutical industry 47 Introduction 47 Saving IRESSA 52 The larger significance of the story of IRESSA 55 Racializing clinical trials as a routine phenomenon 58 Local transformations 59 Pharmacogenomics, race, and post-marketing clinical trials 61 Conclusion 69 4 Managing otherness: genomics and public health policy in Singapore 74 Introduction 74 Population aggregate data, ethnicity, and post-market drug vigilance 74 Irinotecan and UGT1A1 genotyping 75 Carbamazepine and HLA-B*1502 genotyping 77 Analysis of the prevailing practices noted above 80 The historical emergence of “Malay” as a group during the precolonial era 81 “Malayness” during the colonial era 82 “Malayness” in the Malay Peninsula in the postcolonial era 90 The case of the Malay in Singapore 92 Conclusion 94 5 Cancer genomics in clinics 98 Introduction 98 Using ethnicity or race as a basis of clinical decision-making 98 Personalized medicine in clinical practice: drug efficacy 105 Personalized medicine in clinical practice: drug toxicities 110 Personalized medicine in clinical practice: preventive medicine 113 Conclusion 118 Contents ix 6 Socio-economic factors and ethical dilemmas in personalized medicine provision 120 Introduction 120 Genome-based personalized medicine is effective but not curative; moreover, it can be prohibitively expensive 120 Should the cost of a cancer drug be part of the treatment decisions? 122 Who should be expected to interpret genetic tests when cancer is a “context-dependent manifestation”? 130 Privacy concerns and the potential for genetic discrimination at the level of the individual and the group 135 Should genome-based pharmaceuticals be the primary approach to treating cancer? 139 Conclusion 142 7 Conclusion: personalized medicine and population-based genetic/genomic studies 146 The definition of population in population-based genetic studies is context-dependent 148 The definition of a population is not only context-dependent but also fluid and arbitrary 151 The regional racialization of genetics/genomics and the molecularization of ethnicity in Asia 156 The specter of ethnic medicine 158 Cancer genomics in the clinic 159 Bioethics in practicing personalized medicine 160 Upstream engagement and regulatory guidance 163 Appendices 171 Appendix A. A brief socio-history of ten societies in Asia 171 Appendix B. Key characteristics of the scientists and clinician scientists interviewed 172 Appendix C. Eugenic policies and practices in selected countries in Asia 173 Appendix D. Is IRESSA available and subsidized in the ten societies that participated in the HUGO PASNP? 179 Appendix E. Review of the Singapore Ministry of Health Standard Drug List (SDL) 187 Index 191 This page intentionally left blank Acknowledgments I owe many people my deepest appreciation. The following paragraphs gratefully acknowledge just some of those colleagues and friends. I thank the anonymous reviewers of the manuscript and my colleagues in Singapore, Hong Liu, Francis Khek Gee Lim, Alex Law, Hallam Stevens, Lisa Onaga, Sulfikar Amir, Hyung-Wook Park, Lyle Fearnly, Wei Peng Seeto, and Tiow Yong Lee in particular, for their insightful, thoughtful and always helpful feedback and encouragement. Additionally, I would like to thank Ruha Benjamin, Catherine Bliss, Lundy Braun, Duana Fullwiley, Joan Fujimura, Joseph Graves, Amy Hinterberger, Ying-Yi Hong, Jay Kaufman, Michael Montoya, Ann Morn- ing, Dorothy Roberts, Keith Wailoo, and Ken Weiss for their knowledgeable and challenging comments on issues related to social diversity, genetics, and society. Portions of this book were presented at numerous conferences and seminars, and I am grateful for the questions and comments I received at each. Partial drafts of Chapter 2 were presented at the workshop “The Interface of Humanities and Genomics,” organized by Yasuko Takezawa and held at Kyoto University in Japan (January 2011), as well as at the “Reconsidering Race: Cross-Disciplinary and Interdisciplinary Approaches,” co-organized by Kazuko Suzuki and Diego von Vacano and held at Texas A&M University in the USA (May 2013). Par- tial drafts of Chapter 3 were presented at the workshop “Biology, Medicine and Race beyond the Genome,” co-organized with Hallam Stevens and held at