The Freedom of Scientific Research CONTEMPORARY ISSUES in BIOETHICS, LAW and MEDICAL HUMANITIES
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The freedom of scientific research CONTEMPORARY ISSUES IN BIOETHICS, LAW AND MEDICAL HUMANITIES Contemporary Issues in Bioethics, Law and Medical Humanities, edited by Rebecca Bennett and Simona Giordano, of the University of Manchester, was established to publish internationally respected book-length works – primarily monographs and edited collections, but also specialist textbooks – in contemporary issues in bioethics, law and the medical humanities and as such welcomes proposals from this range of academic approaches to pertinent issues in this area. The series focuses on the strong foundations and reputation of the University of Manchester’s world-leading scholars in bioethics and law, and its internationally respected Centre for Social Ethics and Policy. Works from across the humanities, brought to bear on contem- porary, historical and indeed future bioethical questions of the highest social and moral concern and interest, will find a perfect home within this series. FROM REASON TO PRACTICE IN BIOETHICS An anthology dedicated to the works of John Harris Edited by John Coggon, Sarah Chan, Søren Holm and Thomasine Kushner Medicine, patients and the law: Sixth edition Margaret Brazier and Emma Cave Edited by Simona Giordano in collaboration with John Harris and Lucio Piccirillo The freedom of scientific research Bridging the gap between science and society Manchester University Press Copyright © Manchester University Press 2019 This electronic version has been made freely available under a Creative Commons (CC-BY-NC- ND) licence, which permits non-commercial use, distribution and reproduction provided the 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 2767 9 hardback First published 2019 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 Toppan Best-set Premedia Limited to Nico Contents List of figures page ix List of tables x Notes on contributors xi Series editor’s foreword xvii Preface by John Harris xix Acknowledgements xxvi Part I – Freedom of science: promises and hazards Introduction to Part I 3 Simona Giordano 1 The influence of infection on society 19 Peter Lachmann 2 Scientific progress and longevity: curse or blessing? 32 Simona Giordano 3 Reproductive technologies and the family in the twenty-first century 57 Daniela Cutas and Anna Smajdor 4 New frontiers in surgery: the case of uterus and penis transplantation 71 Gennaro Selvaggi and Sean Aas 5 Freedom, law, politics, genes: the case of mitochondrial transfer 92 Iain Brassington 6 Scientific freedom and responsibility in a biosecurity context 105 Catherine Rhodes viii Contents 7 Robotic intelligence: philosophical and ethical challenges 121 David Lawrence 8 Big science and small science: reflections on the relationship between science and society from the perspective of physics 133 Lucio Piccirillo Part II – Freedom of science and the need for regulation Introduction to Part II 143 Simona Giordano 9 Advocating a radical change in policies and new models to secure freedom and efficiency in funding and communication of science 150 Andrea Ballabeni and Davide Danovi 10 Freedom of research and the right to science: from theory to advocacy 162 Andrea Boggio and Cesare P. R. Romano 11 The donation of embryos for research: maintaining trust 6 17 Heidi Mertes 12 From Galileo to embryos and narcotic drugs: the quest for the right to science 185 Marco Cappato 13 Science, self-control and human freedom: a naturalistic approach 201 Gilberto Corbellini and Elisabetta Sirgiovanni 14 Evidence-based policy and the precautionary principle: friends or foes? 212 Roberto Baldoli and Claudio M. Radaelli 15 Let freedom ring for science: an American perspective 220 Mary Woolley Conclusion 225 Simona Giordano Index 231 List of figures 1.1 A history of mortality page 21 4.1 Penile reconstruction with radial forearm flap 74 4.2 Donor-area morbidity (scarring) following the harvesting of a radial forearm flap for penile reconstruction 75 List of tables 1.1 Examples of human infectious diseases of animal origin page 20 1.2 The effectiveness of vaccines 23 Contributors Sean Aas is Senior Research Scholar at the Kennedy Institute of Ethics and Assistant Professor in the Philosophy Department at Georgetown University. His primary areas of research are bioethics, metaethics, and social and political philosophy, with a significant focus on issues of disability: disability as social construct, disability and political egalitarianism, disability and health. These interests tie to broader projects: on the nature and basis of our rights in our bodies; the grounds of egalitarian justice; and the import of diverse embodiment for healthcare ethics and health policy. Roberto Baldoli is Associate Lecturer at the University of Exeter, and a member of the Centre for European Governance. He received his PhD in politics from the University of Exeter in 2015. His main research interests revolve around theory and practice of nonviolence. In his PhD thesis, he reinterpreted nonviolence as an impure praxis, a non-systematic revolutionary approach aiming at freedom and plurality. Roberto is also interested in the European Union. He has published on different aspects of European politics, such as the European Citizens’ Initiative and the Spitzenkandidaten Procedure. Andrea Ballabeni is Clinical Program Leader at Chiesi Farmaceutici and Visiting Scientist at Harvard T. H. Chan School of Public Health. Ballabeni worked in molecular and cell biology basic research for several years, doing doctoral research at the European Institute of Oncology and postdoctoral research at the Harvard Medical School. He later shifted focus towards clinical and public health research as well as science policy. He then worked as Adjunct Assistant Professor of Natural and Applied sciences at Bentley University, teaching courses on human biology and doing research in the Center for Integration of Science and Industry. He is currently working as Clinical Program Leader at Chiesi Farmaceutici, and collaborating as a Visiting Scientist with the Harvard T. H. Chan School of Public Health (USA) on science policies to increase the quality and the output of scientific xii Contributors investigations. Ballabeni is also a science advocate and has collaborated with Associazione Luca Coscioni since 2006. He holds a PhD in molecular oncology from the Open University (UK), a master’s in public health from the Harvard T. H. Chan School of Public Health and an MSc in biology from the University of Parma (Italy). Andrea Boggio is Professor of Legal Studies at Bryant University. He is the author of Compensating Asbestos Victims. Law and the Dark Side of Industrialization (2013) and the co-editor of Health and Development: Toward a Matrix Approach (2009). He has extensively written on science policy issues. He earned a doctoral degree from Stanford University and completed his post-doc training at the University of Geneva. He taught at the Centre for Professional Ethics at Keele University (UK). Iain Brassington is a senior lecturer in the School of Law at the University of Manchester. A philosopher by training, his work covers many areas of applied ethics, with a particular focus on bioscience, and the interaction between ethics and law. His most recent book, Bioscience and the Good Life, was published in 2013; he is currently planning a book on the privacy or otherwise of genetic data. Iain is an editor of, and contributor to, the Journal of Medical Ethics blog; in 2016, he was invited to sit on the BMA’s Medical Ethics Committee. Marco Cappato is Coordinator of the World Congress for Freedom of Scientific Research, Treasurer of the Luca Coscioni Association and promoter of campaigns for the legalisation of euthanasia and illicit drugs in Italy, also through several civil disobedience actions. Cappato served as an MEP (1999–2004 and 2006–09). He has been European Parliament Rapporteur on: ‘privacy in electronic communication Directive’; ‘human rights in the world for 2007’; ‘production of opium for medical purposes in Afghanistan’; ‘public access to EU documents’. He was nominated for the Politician of the Year award organised by Wired magazine in 2003 in San Francisco and was winner of the European of the Year award organised by European Voice magazine in Brussels. Gilberto Corbellini is Full Professor of History of Medicine and Bioethics, and Director of the Museum of the History of Medicine in the Department of Molecular Medicine at Sapienza University of Rome. He has published several books, peer-reviewed and newspaper articles about the history of immunosciences, neuroscience, medical ethics and epistemology, and on science and politics. Recent books include: Perché gli scienziati non sono pericolosi (2009); Scienza quindi democrazia (2011); Scienza (2013); Tutta colpa del cervello (with E. Sirgiovanni, 2013); Bioetica per perplessi (2016). He is working with Elisabetta Sirgiovanni on a new book on the philosophy of evolutionary psychiatry.