From Bench to Bedside, to Track & Field The Context of Enhancement and its Ethical Relevance Perspectives in Medical Humanities Perspectives in Medical Humanities publishes peer reviewed scholarship produced or reviewed under the auspices of the University of California Medical Humanities Consortium, a multi-campus collaborative of faculty, students, and trainees in the humanities, medicine, and health sciences. Our series invites scholars from the humanities and health care professions to share narratives and analysis on health, healing, and the contexts of our beliefs and practices that impact biomedical inquiry. 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From Bench to Bedside, to Track & Field The Context of Enhancement and its Ethical Relevance Silvia Camporesi First published in 2014 by University of California Medical Humanities Press in partnership with eScholarship | University of California © 2014 by Silvia Camporesi University of California Medical Humanities Consortium 3333 California Street, Suite 485 San Francisco, CA 94143-0850 Cover image used with permission: Vladimir Veličković, Belgrado, 1935. Depart (Figura di Atleta Nudo in Partenza) 1973 Acrilico tecnica mista su tela, 146x198 cm. Inv n. 1783 Palazzo Romagnoli Forlì, Collezioni del Novecento Book design by Virtuoso Press. Library of Congress Control Number: 2014934965 ISBN: 978-0-9889865-4-1 Printed in USA Table of Contents Acknowledgments vii Foreword by Professor Søren Holm ix Introduction 1 Chapter 1: Framing the ethical debate on enhancement technologies 4 1.1 What we talk about when we talk about “enhancement” 4 1.2 On the therapy versus enhancement distinction 10 1.3 Absolute versus positional goods 15 1.4 Arguments in favour and against enhancement 18 Chapter 2: From bench to bedside: Genetic technologies to choose children’s traits 26 2.1 Genetic enhancements and the ghost of eugenics 26 2.2 Eugenics and “Eligogenics”: past and present objections 39 2.3 Procreative liberty, and self-determination 48 2.4 Choosing deafness with preimplantation genetic diagnosis: an ethical way to carry on a cultural bloodline? 50 2.5 Disabilities, or just differences? An analysis of the expressivist objection 61 Chapter 3: From bench to track & field: Genetic technologies to enhance athletic performance 67 3.1 Gene transfer, gene enhancement and gene doping: infringing the spirit of sport? 67 3.2 Gene transfer for pain: A tool to cope with the intractable, or an unethical endurance-enhancing technology? 81 3.3 Genetic technologies to scout out children’s precocious talents 93 3.4 Direct-to-consumer genetic tests to “measure” athletic potential 96 3.5 Performance enhancement and anti-doping governance: towards doping under medical context? 107 Chapter 4: Shifting the debate on enhancements from the ethical to the political level 111 4.1 A proposal to alter the payoff matrix in professional sports: shifting the burden of proof of doping to sponsors 111 4.2 What can high-performance sports learn from the field of environmental sustainability? 115 4.3 The case for research on enhancements 123 4.4 A deliberative democracy approach to deal with moral disagreement in the bioethical debate 128 “Partially examined” conclusions 137 Bibliography 139 Index 165 Acknowledgments This book builds to a large extent on my PhD dissertation in Philosophy of Medicine for King’s College London, in particular chapters 1-3, which have been revised and elaborated since the viva in October 2013. Chapter 4 includes new material, while part of the content that was in my PhD thesis has been left out to improve readability of this work. I am deeply grateful to my supervisor, Dr Matteo Mameli, Reader in Philosophy at King’s College London, for supporting and mentoring me, and allowing me a wide degree of freedom in pursuing my research interests during my PhD. I would also like to acknowledge the Wellcome Trust for funding my PhD, and Professor Richard Ashcroft from Queen Mary University and Søren Holm from the University of Manchester for being my PhD examiners and helping me substantially improve this work through their valuable insights and feedback. From 2010 to 2013 I had the privilege of working in the intellectually stimulating atmosphere of the Wellcome Trust-funded Centre for the Humanities & Health at King’s College London. I am grateful to all my colleagues at the Centre for the engaging discussions on medical humanities and philosophy of medicine (among other topics!) over the past three years. In particular, thanks to Elisabetta Babini, Natalie Banner, Monika Class, Bonnie Evans, Keren Hammerschlag, Elselijn Kingma, MM McCabe, David Papineau, Anne Marie Rafferty, Maria Vaccarella, and Stefan Wagner. Thanks goes to Professor Brian Hurwitz, Director of the Centre, for being a great counselor on many fronts and several occasions, and for his great support in helping me launch my career. I now have the pleasure of working in the recently established Department of Social Science, Health & Medicine at King’s College London, and I thank Professor Nikolas Rose, Head of Department, and all my new colleagues at SSHM for welcoming me and fostering such a vibrant environment. This work is also to a good extent the result of work I conducted as a visiting PhD student at the Department of Anthropology, History and Social Medicine (DAHSM) at University of California, San Francisco in 2011/12. I am most grateful first and foremost to Professor Dorothy Porter, and then to all the members of the department, for welcoming me and giving me so many research and work opportunities during my year as a visiting scholar there. A special thanks goes to Brian Dolan, Director of UC Medical Humanities Consortium, for his encouragement and for his inestimable work as Editor of the Perspectives in Medical Humanities Series. Since 2011 Professor Mike McNamee from the University of Swansea has been an invaluable collaborator and mentor. This work incorporates one of our co-authored papers in section 3.2 and references two other co-authored papers. Many thanks go also to my co-author Paolo Maugeri for our long discussions on the Caster Semenya case, and for giving me permission to include a portion of our co-authored article in this work (section 4.4). I am very grateful to my husband James Knuckles for also granting me permission to include a portion of our paper in this work (sections 4.1 and 4.2), and in addition for his invaluable patience, support and encouragement over the writing of my PhD thesis. I gratefully acknowledge permission from Cambridge University Press, Taylor & Francis, Springer and Routledge to reproduce portions of articles in revised form in this book (sections 2.4, 3.2, 3.4., 4.1 and 4.2; publisher and co-authors also acknowledged as footnotes in the text). I also acknowledge Dr Cristina Ambrosini, Director of Art Museums in Forlì, for granting me permission to use the work “Figura di atleta nudo in partenza” by Vladimir Veličković for the cover image of this book. I would also like to acknowledge Mauro Giacca, Director of the International Centre for Genetic Engineering and Biotechnology and former mentor, and Matt Springer at UCSF, for their expert opinions on gene enhancement; and Lisa Bortolotti, Professor of Philosophy at the University of Birmingham, for her constant support and encouragement throughout the years, and for being my role model of a successful academic, woman and mother. Last but not least, my deepest thanks go to my family, whose unwavering support over the years has given me the greatest gift: the freedom to pursue my interests. Foreword Professor Søren Holm Manchester University & University of Oslo & Aalborg University The “enhancement debate,” i.e. the academic discussion of whether physical or cognitive enhancement of human beings is ethically acceptable or not, is often conducted with no real engagement between the protagonists on each side. Each side has its own set of stock arguments, counterarguments and cases (often hypothetical or highly idealised), that in most cases fail to engage in any meaningful way with the ethical concerns that motivate the other side in the debate. As a reader of the enhancement debate it is easy to become bored because the debate does not really seem to be moving, each side just reiterating its original position with ever more elaborate arguments. This book is, however, a fine example of how the debate can move forward if the protagonists were really interested in engaging with the question of whether or not a particular set of enhancements should be promoted, allowed or prohibited in a particular context. The approach taken by Silvia Camporesi is casuistic in the sense that it takes its point of departure not in some idealised philosophical question, e.g. is there a sustainable distinction between treatment and enhancement, but in concrete, specific cases.