Genome editing and human reproduction Previous Nuffield Council publications Non-invasive prenatal testing: ethical issues Genetic screening: a supplement to the 1993 report Published March 2017 by the Nuffield Council on Bioethics Published July 2006 Genome editing: an ethical review Published September 2016 The ethics of research involving animals Published May 2005 Children and clinical research: ethical issues Published May 2015 The ethics of research relating to healthcare in developing countries: a follow-up Discussion Paper The collection, linking and use of data in biomedical Published March 2005 research and health care: ethical issues Published February 2015 The use of genetically modified crops in developing countries: a follow-up discussion paper The findings of a series of engagement activities Published December 2003 exploring the culture of scientific research in the UK Published December 2014 Pharmacogenetics: ethical issues Published September 2003 Novel neurotechnologies: intervening in the brain Published June 2013 Genetics and human behaviour: the ethical context Published October 2002 Donor conception: ethical aspects of information sharing The ethics of patenting DNA: a discussion paper Published April 2013 Published July 2002 Emerging biotechnologies: technology, choice and The ethics of research related to healthcare in the public good developing countries Published December 2012 Published April 2002 Novel techniques for the prevention of mitochondrial Stem cell therapy: the ethical issues – a discussion DNA disorders: an ethical review paper Published June 2012 Published April 2000 Human bodies: donation for medicine and research The ethics of clinical research in developing countries: Published October 2011 a discussion paper Genome editing and Published October 1999 Biofuels: ethical issues Published April 2011 Genetically modified crops: the ethical and social human reproduction issues Medical profiling and online medicine: the ethics of Published May 1999 ‘personalised healthcare’ in a consumer age Published October 2010 Mental disorders and genetics: the ethical context Published September 1998 Dementia: ethical issues Published October 2009 Animal-to-human transplants: the ethics of xenotransplantation Public health: ethical issues Published March 1996 Published November 2007 Human tissue: ethical and legal issues The forensic use of bioinformation: ethical issues Published April 1995 Published September 2007 Genetic screening: ethical issues Critical care decisions in fetal and neonatal medicine: Published December 1993 Council on Bioethics Nuffield ethical issues Published November 2006 Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Printed in the UK © Nuffield Council on Bioethics 2017 ISBN: 978-1-904384-33-5 Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Telephone: 020 7681 9619 Email: [email protected] Website: http://www.nuffieldbioethics.org ISBN: 978-1-904384-34-2 July 2018 To order a printed copy, please contact the Nuffield Council on Bioethics or visit the website. £10 per report (where sold) Developing countries: free © Nuffield Council on Bioethics 2018 All rights reserved. Apart from fair dealing for the purpose of private study, research, criticism or review, no part of the publication may be produced, stored in a retrieval system or transmitted in any form, or by any means, without prior permission of the copyright owners. Web references throughout this report were accessed June 2018. Printed in the UK ESP Colour Ltd. Elgin Drive Swindon Wiltshire SN2 8XU http://www.espcolour.com Suggested citation: Nuffield Council on Bioethics (2018) Genome Editing and Human Reproduction: social and ethical issues (London: Nuffield Council on Bioethics) Genome editing and human reproduction: social and ethical issues Nuffield Council on Bioethics Professor David Archard (Chair) Professor Simon Caney Dr Tara Clancy Professor Ann Gallagher Dr Andy Greenfield Professor Erica Haimes Professor Julian Hughes (Deputy Chair) Sir Roland Jackson Dr David Lawrence Professor Michael Parker* Professor Shaun Pattinson Professor Tom Shakespeare Professor Mona Siddiqui Professor Christine Watson Professor Robin A. Weiss Professor Heather Widdows Mr Adam Wishart Professor Karen Yeung** Dr Paquita de Zulueta * Co-opted member of the Council while chairing the working party on research in global health emergencies. ** Co-opted member of the Council while chairing the working party on genome editing and human reproduction. iii Executive Hugh Whittall (Director) Kate Harvey Catherine Joynson Ranveig Svenning Berg Dr Peter Mills Dr Anna Wilkinson Katharine Wright Jade Rawling (maternity cover) Carol Perkins Sophia Griffiths Sarah Walker-Robson The Nuffield Council’s terms of reference: ■ To identify and define ethical questions raised by recent developments in biological and medical research that concern, or are likely to concern, the public interest; ■ To make arrangements for the independent examination of such questions with appropriate involvement of relevant stakeholders; ■ To inform and engage in policy and media debates about those ethical questions and provide informed comment on emerging issues related to or derived from its published or ongoing work; and ■ To make policy recommendations to Government or other relevant bodies and to disseminate its work through published reports, briefings and other appropriate outputs. The Nuffield Council on Bioethics is funded jointly by the Medical Research Council, the Nuffield Foundation, and Wellcome iv Acknowledgments We would like to acknowledge many of the people who helped and encouraged the working party and executive staff in the course of this project. We would especially like to acknowledge the input and encouragement of Charis Thompson, who was a member of the working party that produced the Council’s 2016 report. Charis was initially a member of the present working party but was unable, due to an appointment at University of California, Berkeley on the west coast of the United States, to continue as a full participant in the group’s deliberations. She nevertheless provided continuing advice and input, including in relation to parallel developments in the United States. We thank Rumiana Yotova for the preparation of a research report on the international regulation of genome editing and Alisa McKeon for providing her with research assistance. We also thank Achim Rosemann, Li Jiang and Xinqing Zhang for the preparation of a report on relevant law and regulation in the People’s Republic of China. We are making both of these documents available in the expectation that others will draw further benefit from them. We are grateful to George Gaskell of the London School of Economics and Political Science for reviewing and advising on our online questionnaire, and to the volunteers who tested it, as well as everyone who participated – their thoughtful responses enriched the discussions of the working party and we expect that they will repay further study. We would also like to recognise the important contributions of those whose input is acknowledged in the first two Appendices: participants in fact-finding meetings, those who made themselves available for our series of research interviews, all those who responded to our call for evidence as well as our thorough and constructive external reviewers. A number of people have assisted us at various times by providing information, intellectual engagement and opportunities to discuss our emerging thoughts in other contexts. In no particular order, our thanks go to Jonathan Montgomery, the former chair of the Nuffield Council, Katherine Littler, Sarah Rappaport and other colleagues at Wellcome, François Hirsch and Hervé Chneiweiss at INSERM, Lluis Montoliu of ARRIGE, Simon Burall at Involve, Katie Bowman, Keegan Sawyer and colleagues at the US National Academies of Sciences, Engineering and Medicine, Sheila Jasanoff and Ben Hurlbut in the US, Nuria Terribas and colleagues at The Fundació Víctor Grífols i Lucas, Laurence Lwoff at the Council of Europe, Andy Greenfield at the MRC Harwell Institute, Robin Lovell-Badge at the Francis Crick Institute and Allan Pacey of the University of Sheffield. Throughout this project, we have been kept on our mettle by the regular scrutiny of members of the Nuffield Council and, in particular, a subgroup of members who have provided more detailed feedback: Erica Haimes, Roland Jackson, Shaun Pattinson, Tom Shakespeare and Robin Weiss. Additional research assistance was provided by Ran Svenning Berg, and Jade Rawling helped to brush up the document in the final stages. We are also extremely grateful to Claudia Stocker of Vivid Biology, who worked patiently with us to produce the two diagrams contained in this report. Finally, we acknowledge the contribution of two members of the Nuffield Council staff who left the Executive before the conclusion of this project: Dr Bettina Schmietow, who provided research support in the early stages of the work, and Dr Shaun Griffin, who provided very able maternity cover in the role of Communications Manager. v Foreword The capacity to select the traits of our future children has long been a central theme in science fiction writing, often solemnly warning of the moral dangers associated with doing so, even when undertaken with the best of intentions. The discovery of DNA, the so-called ‘code of life’, pointed the way towards the scientific avenue through which deliberate intervention