15/16” Hd $29.95 “Few words have as much ethical clout these days as that of ‘choice,’ a word that can m e Personalized healthcare—or what ui be construed as the centrality of ‘me.’ Using personalized medicine as her point of gc the award-winning author Donna Dickenson departure, Donna Dickenson brilliantly works her way through a range of recent hek calls “Me Medicine”—is radically transform- se medical developments to show the damage the dominance of ‘me’ can bring. Her ing our longstanding “one-size-fits-all” model. n book can help restore the ‘us’ that has been diminished.” Technologies such as direct-to-consumer ls daniel callahan, io genetic testing, pharmacogenetically developed t m e d i c i n e cofounder and president emeritus of The Hastings Center en therapies in cancer care, private umbilical cord r and author of The Roots of Bioethics: Health, Progress, Technology, Death blood banking, and neurocognitive enhance- a ment claim to cater to an individual’s specific tm “In this timely book, Dickenson levels trenchant criticism at the poster child of the u biological character, and, in some cases, these twenty-first-century biomedical establishment: ‘personalized medicine.’ Analyzing re v s . technologies have shown powerful potential. e an impressive array of practices in the new life sciences, she makes a persuasive Yet in others they have produced negligible a argument that, as personalized medicine unfolds, market values and individualism m m e or even negative results. Whatever is behind n are trumping the ideals of public health. This book comes at a critical moment. the rise of Me Medicine, it isn’t just science. d As we reappraise the social contract of health care, this book helps better direct e So why is Me Medicine rapidly edging out We research and development towards the common good.” fd Medicine, and how has our commitment to our i david winickoff, University of California, Berkeley l collective health suffered as a result? mi In her cogent, provocative analysis, Dick- c “Recognizing that there are trade-offs in how we conceptualize medicine as either d i enson examines the economic and political o ni driven and developed for the common good or specialized for the individual, Dick- m factors fueling the Me Medicine phenomenon n m e d i c i n e enson offers an important examination of contemporary medicine and a beauti- ’s c and explores how, over time, this paradigm shift F o fully written account of what is at stake when the common good is overlooked. r e in how we approach our health might damage donna dickenson was born and educated Hands down, she is one of the most insightful contributors to law and medicine on ld our individual and collective well-being. His- in New England. After an appointment as asso- discourse, and this book is a must-read for everyone concerned about the future of ti v torically, the measures of “We Medicine,” such e w ciate in research at Yale University, she held biotechnology.” r s as vaccination and investment in public-health a professorships at several U.K. universities. She michele b. goodwin, University of Minnesota, . infrastructure, have radically extended our life r is now professor emerita of medical ethics at the editor of Baby Markets: Money and the New Politics of Creating Families spans, and Dickenson argues we’ve lost sight of University of London and research associate at sw that truth in our enthusiasm for “Me Medicine.” o the Centre for Health, Law, and Emerging Tech- “If you are wondering what to make of personalized medicine’s grand claims, let Dickenson explores how personalized medi- u nologies at the University of Oxford. Her book Dickenson be your guide. Turning her keen scientific and political intelligence to e r e c l a i m i n g b i o t e c h n o l o g y cine illustrates capitalism’s protean capacity t Body Shopping: Converting Body Parts to Profit biotech visions of individually tailored drugs, consumer gene tests, enhancement h for creating new products and markets where was called “essential reading” by The Lancet and technologies, and more, she finds tidbits of hope for improving healthcare among km f o r t h e c o m m o n g o o d none existed before—and how this, rather than “ambitious and thoughtful” by New Scientist. In scads of hype—some of it dangerous. This must-read book makes a powerful case o scientific plausibility, goes a long way toward e 2006, Dickenson was awarded the prestigious for taming market domination and ‘me-centeredness’ and for renewing our com- r explaining private umbilical cord blood banks International Spinoza Lens award for her con- mitments to public health and the common good.” ed and retail genetics. Drawing on the latest find- a tribution to public debate on ethics, becoming marcy darnovsky, i ings from leading scientists, social scientists, F the first and only woman to win the prize. executive director, Center for Genetics and Society rc and political analysts, she critically examines e ei four possible hypotheses driving our Me - n Medicine moment: a growing sense of threat; a jacket design: chang jae lee columbia university pres new york donna dickenson wave of patient narcissism; corporate interests cup.columbia.edu e driving new niche markets; and the dominance printed in the u.s.a. of personal choice as a cultural value. She con- cludes with insights from political theory that emphasize a conception of the commons and the steps we can take to restore its value to mod- columbia ern biotechnology. ME MEDICINE vs. WE MEDICINE ME MEDICINE vs. WE MEDICINE Reclaiming Biotechnology for the Common Good DONNA DICKENSON Columbia University Press New York Columbia University Press Publishers Since 1893 New York Chichester, West Sussex cup.columbia.edu Copyright © 2013 Donna Dickenson All rights reserved Library of Congress Cataloging-in-Publication Data Dickenson, Donna. Me medicine vs. we medicine : reclaiming biotechnology for the common good / Donna Dickenson. p. ; cm. Includes bibliographical refernces and index. ISBN 978-0-231-15974-6 (cloth : alk. paper)—ISBN 978-0-231-53441-3 (e-book) I. Title. [DNLM: 1. Individualized Medicine—ethics. 2. Biotechnology—ethics. 3. Public Health Practice—ethics. 4. Social Justice. WB 102] 174.2—dc23 2012037582 Columbia University Press books are printed on permanent and durable acid-free paper. Th is book is printed on paper with recycled content. Printed in the United States of America c 10 9 8 7 6 5 4 3 2 1 jackey design: chang jae lee References to websites (URLs) were accurate at the time of writing. Neither the author nor Columbia University Press is responsible for URLs that may have expired or changed since the manuscript was prepared. CONTENTS Preface vii 1. A Reality Check for Personalized Medicine 1 2. “Your Genetic Information Should Be Controlled by You”: Personalized Genetic Testing 30 3. Pharmacogenetics: One Patient, One Drug? 62 4. “Your Birth Day Gift ”: Banking Cord Blood 89 5. Enhancement Technologies: Feeling More Like Myself 113 6. “Th e Ancient, Useless, Dangerous, and Filthy Rite of Vaccination”: Public Health, Public Enemy? 143 7. Reclaiming Biotechnology for the Common Good 180 Notes 203 References 227 Index 263 PREFACE M y father died of Hodgkin’s disease when he was t wenty-five. I remember visiting him, encased by a frightening iron lung, in a Veterans Administration hospital near New York. (Th e next day he wrote a letter reas- suring me, with a cartoon of his feet sticking comically out of the iron lung.) Th e VA accepted responsibility for his medical treatment, and later for my college education, because he’d contracted the disease during his naval ser- vice in World War II. Of course, to me, at the age of four, a hospital was just a hospital, whether public or private—or more likely, just a strange and scary place. It was only later that I became aware that the VA hospitals where my father and grandfather underwent treatment were something to be very grateful for: a widespread and accessible example of publicly funded care, one form of what I call “We Medicine.” In this book, I examine why We Medicine has instead become increas- ingly distrusted—why public health has oft en come to be seen as a public enemy—and why its opposite number, personalized healthcare—what I call “Me Medicine”—is gaining the ascendancy. Even in the increasingly individualized American medical system, advocates of personalized medi- cine claim that healthcare isn’t individualized enough. With the additional glamour of new biotechnologies such as genetic testing behind it, Me viii PREFACE Medicine appears to its advocates as the inevitable and desirable way of the future. Despite my early experiences, I don’t automatically assume that Me Medi- cine is bad and We Medicine is good, even though the proponents of person- alized healthcare very rarely challenge their own preconception that the re- verse is true. Instead, I do my level best to give a balanced, evidence-based account. Given that the scientifi c evidence doesn’t dictate that you have to be ready to accept the supposed revolution of personalized medicine, where do we go from here? Is Me Medicine or We Medicine the way forward? Must we choose? Th e answer to this question can’t just depend on the scientifi c evidence, because moral and political choices are involved—although it is important to know what that evidence is before we can give an informed answer. Th at’s a very major chunk of what I try to do in this book: to give you the evidence about the various forms of personalized medicine, so that you can decide for yourself. But in addition to off ering a reality check for personalized medicine, I also try to do something more: to ask some big questions about the role of the communal and the individual in healthcare and in our civic life. I’m a phi- losopher by training, so I know how far back these debates go and how they go on and on. Th ey’re embodied and emblematized today in the personalized healthcare movement, but they have a much older pedigree. Part of the task of this book is to set personalized healthcare in that broader social and political context. Whatever explains the rise of Me Medicine, it isn’t just the science behind it. Likewise, the causes of popular rebellion against forms of We Medi- cine such as vaccination aren’t rooted only in medical evidence. I f the scientifi c evidence alone doesn’t explain the rise of Me Medicine and the comparative decline of We Medicine, what does? I look critically at four possible factors, some of which will turn out to be more convincing than oth- ers: threat, narcissism, corporate interests, and the dominance of autonomy and choice in our thinking. And I ask this crucial question: how did we move from what was originally presented as a communitarian vision for the new genetic biomedicine to the now-dominant personalized medicine paradigm? Th roughout the book, I’m driven by the question of how we can reclaim biotechnology for the common good. In the fi nal chapter, the concept of the commons will be a major focus. Reclaiming biotechnology for the greater good will involve resurrecting the commons. Although some attention has focused on the genome as the common property of humanity, many other PREFACE ix aspects of modern biomedicine could, and I think should, be considered a commons. For example, when enough children are vaccinated against dis- eases such as measles, the resulting population, or “herd,” immunity also benefi ts neonates, the elderly, and others too frail to be vaccinated. But when too many parents opt out of vaccination, population immunity is diminished, just as overgrazing or overfi shing subtracts from a common resource in land or fi sheries. In the extreme, the common resource is put fatally at risk. I’ve been interested in the concept of the commons in biomedicine for some time, primarily in terms of the commodifi cation of the body. Much of my work is devoted to showing how concepts from the law of property, such as the com- mons, can be applied to medicine in such a way as to protect the rights of the vulnerable. In my academic books Property, Women, and Politics (1997) and Property in the Body (2007), as well as in my popular-science book Body Shop- ping (2008), I examine the way in which the human body, particularly women’s tissue, is becoming an object of commercial exploitation, but I also off er strate- gies using property concepts to overcome that sort of exploitation. Here, in Me Medicine vs. We Medicine , I’ve expanded the focus beyond commodifi cation of the body and into such new biotechnologies as pharmacogenetics and neuro- cognitive enhancement. But as well as being tied together by property concepts such as the commons, my earlier work and this book are linked through the constant surprises thrown up by the commercialization of biomedicine and the diffi culty of regulating that unpredictability. Because I’ve always been an avid proponent of mutuality and interrelation- ship as the most important issues in bioethics, rather than the dominant con- cept of autonomy, it’s very gratifying for me to be able to acknowledge how much I’ve gained from the generosity of others in writing this book. Th anks to other members of the Worldwide Universities Network “Biocapital and Bioequity” group (particularly Nik Brown, Cathy Waldby, Danae McLeod, Andrew Webster, Sigrid Sterckx, and Julian Cockbain), I’ve been able to re- port on unexpected and oft en counterintuitive developments in Me Medi- cine—for example, the international trade in umbilical cord blood. Greg Mc- Clennan and Susan Jim of the Institute for Advanced Studies at the University of Bristol were instrumental in encouraging and hosting the Biocapital net- work. I’m very grateful to them. I owe a great debt to Dr. Amar Jesani, editor of the Indian Journal of Medi- cal Ethics, for alerting me to the human papillomavirus controversy in India and for so promptly and patiently replying to all my requests for further in- formation. Richard Moxon, emeritus professor of pediatrics at the University