Personalised cancer medicine foregrounds the experiences CUNNINGHAM-BURLEY SWALLOW ROSS, CHEKAR, KERR, of cancer patients, carers and practitioners in the United Kingdom. The authors trace the promise and possibilities of new genomic approaches to cancer as they unfold through everyday encounters with novel research, tests and treatments in the cancer clinic and beyond. Contrasting powerful claims of transformation and benefit with the difficult and painstaking work involved in making sense of novel AND data, results and predictions, they show the different futures crafted across policy, practice and personal accounts. Representing the first book to investigate how personalised cancer medicine is reshaping the futures of cancer patients, carers and professionals in uneven and partial ways, this MEDICINE CANCER book makes an essential contribution to our knowledge of cancer medicine and society. PERSONALISED Anne Kerr is Professor of Sociology at the University of Glasgow PERSONALISED Choon Key Chekar is a Senior Research Associate at the University of Lancaster CANCER MEDICINE Emily Ross is a Research Fellow at the University of Edinburgh Julia Swallow is a Wellcome Trust Senior Research Fellow in Future crafting in the genomic era Humanities and Social Sciences at the University of Edinburgh Sarah Cunningham-Burley is Professor of Medical and Family ANNE KERR, CHOON KEY CHEKAR, Sociology at the University of Edinburgh EMILY ROSS, JULIA SWALLOW AND SARAH CUNNINGHAM-BURLEY ISBN-13: 978-1-5261-4102-6 INSCRIPTIONS www.manchesteruniversitypress.co.uk Personalised cancer medicine INSCRIPTIONS Series editors Des Fitzgerald and Amy Hinterberger Editorial advisory board Vivette García Deister, National Autonomous University of Mexico John Gardner, Monash University, Australia Maja Horst, Technical University of Denmark Robert Kirk, Manchester, UK Stéphanie Loyd, Laval University, Canada Alice Mah, Warwick University, UK Deboleena Roy, Emory University, USA Hallam Stevens, Nanyang Technological University, Singapore Niki Vermeulen, Edinburgh, UK Megan Warin, Adelaide University, Australia Malte Ziewitz, Cornell University, USA Since the very earliest studies of scientific communities, we have known that texts and worlds are bound together. One of the most important ways to stabilise, organise and grow a laboratory, a group of scholars, even an entire intellectual community, is to write things down. As for science, so for the social studies of science: Inscriptions is a space for writing, recording and inscribing the most exciting current work in sociological and anthro- pological – and any related – studies of science. The series foregrounds theoretically innovative and empirically rich inter- disciplinary work that is emerging in the UK and internationally. It is self-consciously hospitable in terms of its approach to discipline (all areas of social sciences are considered), topic (we are interested in all scientific objects, including biomedical objects) and scale (books will include both fine-grained case studies and broad accounts of scientific cultures). For readers, the series signals a new generation of scholarship captured in monograph form – tracking and analysing how science moves through our societies, cultures and lives. Employing innovative methodologies for investigating changing worlds, Inscriptions is home to compelling new accounts of how science, technology, biomedicine and the environment translate and transform our social lives. Previously published titles Trust in the system: Research Ethics Committees and the regulation of biomedical research Adam Hedgecoe Personalised cancer medicine Future crafting in the genomic era Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow and Sarah Cunningham-Burley Manchester University Press Copyright © Manchester University Press 2021 The right of Anne Kerr, Choon Key Chekar, Emily Ross, Julia Swallow and Sarah Cunningham-Burley to be identified as the authors of this work has been asserted by them in accordance with the Copyright, Designs and Patents Act 1988. This electronic version has been made freely available under a Creative Commons (CC-BY-NC-ND) licence, thanks to the support of The Wellcome Trust, which permits non-commercial use, distribution and reproduction provided the editor(s), chapter author(s) and Manchester University Press are fully cited and no modifications or adaptations are made. Details of the licence can be viewed at https://creativecommons.org/licenses/by-nc-nd/4.0/ Published by Manchester University Press Altrincham Street, Manchester M1 7JA www.manchesteruniversitypress.co.uk British Library Cataloguing-in-Publication Data A catalogue record for this book is available from the British Library ISBN 978 1 5261 4102 6 hardback ISBN 978 1 5261 4101 9 web ISBN 978 1 5261 5653 2 ePub First published 2021 The publisher has no responsibility for the persistence or accuracy of URLs for any external or third-party internet websites referred to in this book, and does not guarantee that any content on such websites is, or will remain, accurate or appropriate. Typeset by New Best-set Typesetters Ltd Contents Acknowledgements vi Introduction: Exploring personalised cancer medicine 1 1 Personalising cancer treatment and diagnosis through genomic medicine 22 2 Genomic techniques in standard care: gene-expression profiling in early-stage breast cancer 58 3 Molecular profiling foradvanced gynaecological cancer: prolonging foreshortened futures 88 4 Optimising personalisation: adaptive trials for intractable cancers 118 5 Genomics at scale: participation to build the bioeconomy 152 6 Going private: digital culture and personalised medicine 183 7 At the limits of participation 211 Conclusion: Future-crafting 241 Bibliography 256 Index 271 Acknowledgements We owe numerous debts of gratitude to colleagues, participants, advisors, friends and family who have helped us throughout our project and authorship of this book. The Wellcome Trust has gener- ously supported our work, giving us the freedom to pursue our research ideas and involved us in a vibrant and inspiring community of academics and scholars from across the humanities and social sciences. We are particularly grateful to Dan O’Connor and Paul Woodgate for their support. Sarah would also like to thank the Rockefeller Foundation and its Bellagio Center Residency Programme which generously supported her Academic Writing Residency in the autumn of 2018. We would also like to thank colleagues and reviewers at Manchester University Press for supporting this book, particularly our commissioning editor Tom Dark. A large project like this involves numerous colleagues who have been part of the team, including supporting it ‘behind the scenes’, and we want to pay tribute to their contribution here: thank you to Kay Lindsay, Gwen Jacques, Emma Doyle, Tineke Broer, Sue Chowdhry, Vivien Smith, Seiyan Yang, Mayowa Irelewuyi, Thomas Kerboul and Steph Sinclair. Many colleagues at the universities of Leeds and Edinburgh have supported our work from its inception – thank you. Particular appreciation is due to those who provided much-welcomed advice and support throughout the project as part our Advisory Board – Debbie Beirne, David Cameron, Harry Campbell, Charlie Gourley, Graeme Laurie, Maggie Knowles, Derek Stewart, Steve Sturdy and Christopher Twelves. We are also incredibly grateful for the support of colleagues from other institutions and organisations who joined Acknowledgements vii our Advisory Board – Pascale Bourret, Mary Boulton, Alberto Cambrosio and Kathryn Scott. We have also been encouraged and supported by other ‘friends to the project’ who have guided our work, notably Tim Aitman, Julie Atkey, Karen Bell, Malcolm Dunlop, Tim Bishop, Sarah Chan, Sonja Erikainen, Margaret Frame, Gill Haddow, Geoff Hall, Peter Hall, Nina Hallowell, Denise Hancock, Ruth Holliday, Greg Hollin, Andrew Jack, Iain Macpherson, Julia Newton-Bishop, Martyn Pickersgill, Evi Theodoratou, Karen Throsby, Nick West, Andy Wilson, Gill Wilson, Allison Worth and Frances Yuille. We also thank our colleagues at the Cancer Research UK Edinburgh Centre and the Centre for Biomedicine, Self and Society, both at the University of Edinburgh, the Yorkshire Cancer Research, Leeds Cancer Centre and the School of Sociology and Social Policy at the University of Leeds for their intellectual and practical support. We have benefited from warm and insightful support from our two Patient and Public Involvement panels, who have journeyed with us over the past few years, providing encouragement and very sound advice on many aspects of our research. We can’t thank you enough for this. There is a large and, at times, quite intimidating community of scholars working on cancer patienthood, and this world does not always intersect with the fields of science and technology studies and medical sociology where we ourselves are most at ease. However, we have been grateful to colleagues who have involved us in their networks, events and projects. Particular thanks are due to Alberto and Pascale, Ignacia Arteaga, Rikke Sand Andersen, Kirstin Bell, Patrick Castel, Sophie Day, Bobbie Farsides, Cinzia Greco, Henry Llewellyn, Joanna Latimer, Anneke Lucassen, Mary McBride, Mike Parker, Jeannie Shoveller, Carsten Timmermann and William Viney. Likewise, we have had the privilege of engaging with a range of clinical and scientific networks and would like to acknowledge sincerely their receptiveness to social science and to our research. Profound and sincere thanks are also due to