Genomics and the ReimaGininG of PeRsonalized medicine This page has been left blank intentionally Genomics and the Reimagining of Personalized Medicine RichaRd tutton Lancaster University, UK © Richard tutton 2014 all rights reserved. no part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise without the prior permission of the publisher. Richard tutton has asserted his right under the copyright, designs and Patents act, 1988, to be identifed as the author of this work. Published by ashgate Publishing limited ashgate Publishing company Wey court east 110 cherry street union Road suite 3-1 farnham Burlington, Vt 05401-3818 surrey, Gu9 7Pt usa england www.ashgate.com British Library Cataloguing in Publication Data A catalogue record for this book is available from the British Library The Library of Congress has cataloged the printed edition as follows: tutton, Richard, 1972– Genomics and the reimagining of personalized medicine / by Richard tutton. pages cm includes bibliographical references and index. ISBN 978-1-4724-2256-9 (hardback) -- ISBN 978-1-4724-2257-6 (ebook) -- ISBN 978-1-4724-2258-3 (epub) 1. Genomics--Social aspects. 2. Personalized medicine. 3. social medicine. i. title. Qh438.7.t87 2014 572.8’6--dc23 2014015819 ISBN 9781472422569 (hbk) ISBN 9781472422576 (ebk – PDF) ISBN 9781472422583 (ebk – ePUB) II Contents List of Figures and Table vii Acknowledgements ix Introduction 1 1 Biomedicine and the Unmaking and Remaking of Individuality 19 2 From ‘Pharmacological Individuality’ to Personalized Medicines 45 3 Developing and Marketing Personalized Medicines 71 4 Health and Care in an ‘Era of Personalized Medicine’ 91 5 Individualizing Prediction and Prevention: From Personalized Medicines to Personal Genomes 113 6 Personal Genomics and its Contestations 133 7 The Personalized Medicine Imaginary and Beyond 151 References 169 Index 199 This page has been left blank intentionally List of Figures and Table Figures 3.1 Zelboraf ad campaign. Image courtesy of F. Hoffmann-La Roche Ltd and VCCP Health Ltd 72 5.1 The 23andMe Saliva Collection Kit 125 Table 3.1 Combined FDA and PharmKGB data on pgx drug labels (as of January 2013) 88 This page has been left blank intentionally Acknowledgements This book began life when I was working in the ESRC (Economic and Social Research Council) Centre for Economic and Social Aspects of Genomics (Cesagen), a collaboration between Lancaster and Cardiff universities. Cesagen was funded as part of the ESRC Genomics Network. I was privileged to be a part of Cesagen; its resources allowed me to attend some major international scientifc meetings that helped with my thinking in relation to this book. At Cesagen, I would like to acknowledge the support of the Director Ruth Chadwick and Associate Director Adam Hedgecoe; Christopher Groves, with whom I worked on a Cesagen project on ‘Expectations and Personal Genomics’; Adrian Mackenzie, for countless conversations about genomics and data over coffee and lunch; Paul Oldham, for sharing my pain when it came to the diffculties of interpreting FDA drug data; Tish Brown, who provided assistance in the form of interview transcription; and, fnally, Kate Wright for her support throughout my time in Cesagen as I took on an administrative role that was often demanding. While this book started in Cesagen, most of it was written once I had joined the Department of Sociology at Lancaster University. I would like to thank the Department for granting me sabbatical leave in 2012–13, which enabled me to continue this project. I would like to thank Departmental colleagues for their polite inquiries as to my progress and words of encouragement, in particular Rebecca Coleman (now at Goldsmith’s College, University of London), Anne Cronin, Hannah Morgan, David Tyfeld (now at the Lancaster Environment Centre), and Imogen Tyler. John Urry provided advice on the writing and publishing process. Amy Calvert also provided a few much needed breaks from the writing desk. Beyond my department, thanks are also due to Stuart Hogarth (Department of Social Science, Health and Medicine at King’s College), Paolo Palladino (Department of History at Lancaster University), Aaron Panofksy (Institute of Genetics and Society at University of California Los Angeles), and Tamar Sharon (Centre for Science, Technology and Society at Maastricht University) for many useful conversations and insights. For reading and commenting on different parts of the book at various stages, I would like to thank Rina Bliss (Department of Sociology at University of California San Francisco), Nik Brown (Department of Sociology at University of York), Courtney Davis (Department of Social Science, Health and Medicine at King’s College London), Paul Martin (Department of Sociology at Sheffeld