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Ethical Issues Nuffield Bioinfo CD and web covers.qxd 30/8/07 15:04 Page 1 The forensic use The forensic use of bioinformation: The forensic Genetic screening: ethical issues Published December 1993 of bioinformation: Human tissue: ethical and legal issues Published April 1995 ethical issues Animal-to-human transplants: the ethics of xenotransplantation Published March 1996 Mental disorders and genetics: the ethical context Published September 1998 Genetically modified crops: the ethical and social issues Published May 1999 The ethics of clinical research in developing countries: a discussion paper ethical issues Published October 1999 Stem cell therapy: the ethical issues – a discussion paper Published April 2000 The ethics of research related to healthcare in developing countries Published April 2002 The ethics of patenting DNA: a discussion paper Published July 2002 Genetics and human behaviour: the ethical context Published October 2002 Pharmacogenetics: ethical issues Published September 2003 The use of genetically modified crops in developing countries: a follow-up Discussion Paper Published December 2003 The ethics of research related to healthcare in developing countries: a follow-up Discussion Paper Published March 2005 The ethics of research involving animals Published May 2005 Genetic Screening: a Supplement to the 1993 Report by the Nuffield Council on Bioethics Published July 2006 Critical care decisions in fetal and neonatal medicine: ethical issues Published November 2006 Council on Bioethics Nuffield Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Telephone: +44 (0)20 7681 9619 Fax: +44 (0)20 7637 1712 Internet: www.nuffieldbioethics.org Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Telephone: 020 7681 9619 Fax: 020 7637 1712 Email: [email protected] Website: http://www.nuffieldbioethics.org ISBN 978-1-904384-16-8 September 2007 To order a printed copy please contact the Nuffield Council on Bioethics or visit the website. European countries (EU and non EU): £10 per report (where sold) Countries outside Europe: £15 per report (where sold) Developing countries (single copies): Free CD-ROMs: Free © Nuffield Council on Bioethics 2007 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. Produced by: Cambridge Publishers Ltd 275 Newmarket Road Cambridge CB5 8JE www.cpl.biz Printed in the UK The forensic use of bioinformation: ethical issues Nuffield Council on Bioethics Professor Sir Bob Hepple QC FBA (Chairman) Professor Peter Smith CBE FMedSci (Deputy Chairman) Professor Roger Brownsword Professor Sir Kenneth Calman KCB FRSE Professor Sian Harding FAHA Professor Peter Harper The Rt Revd Lord Harries of Pentregarth DD FKC FRSL FMedSci Professor Ray Hill FMedSci Professor Søren Holm Mr Anatole Kaletsky Dr Rhona Knight FRCGP Lord Krebs Kt FRS FMedSci* Professor Peter Lipton FMedSci Professor Alison Murdoch FRCOG Dr Bronwyn Parry Professor Hugh Perry FMedSci Lord Plant of Highfield Professor Nikolas Rose * co-opted member of the Council while chairing the Working Party on Public health: ethical issues Secretariat Hugh Whittall (Director) Professor Sandy Thomas (Director until November 2006) Dr Carole McCartney (Project Manager) Dr Catherine Moody (until March 2007) Harald Schmidt Katharine Wright Carol Perkins Catherine Joynson Caroline Rogers Julia Trusler Audrey Kelly-Gardner Kate Harvey The terms of reference of the Council are: 1 to identify and define ethical questions raised by recent advances in biological and medical research in order to respond to, and to anticipate, public concern; 2 to make arrangements for examining and reporting on such questions with a view to promoting public understanding and discussion; this may lead, where needed, to the formulation of new guidelines by the appropriate regulatory or other body; 3 in the light of the outcome of its work, to publish reports; and to make representations, as the Council may judge appropriate. The Nuffield Council on Bioethics is funded jointly by the Medical Research Council, the Nuffield Foundation and the Wellcome Trust iii Foreword This Report deals with some discrete issues at the cusp of current controversies about the proper balance between police powers and individual rights to liberty, autonomy and privacy. In what circumstances should the police be permitted to take fingerprints and DNA samples, and for how long should they be able to retain them and the resulting DNA profiles? How should DNA and fingerprint evidence be used in criminal trials? When is it ethically acceptable to use the National DNA Database (NDNAD) for familial searching, inferring ethnicity and non-operational research purposes? What systems of governance and regulation are necessary? Our starting point is that, while the science and technology of DNA profiling and fingerprinting are, for the most part, increasingly robust and reliable, mistakes can and do occur. We make recommendations that are designed to reduce the risks of mistaken identification and wrongful conviction which may result from the (relatively rare) cases of flawed science and the (more frequent) failure of experts to present the scientific evidence in ways that can be properly understood by legal professionals and juries. In dealing with the central questions of police powers to obtain biological evidence, to retain it, and to search DNA and fingerprint databases for various purposes, our main theme is proportionality: that the presumption in a liberal democracy in favour of individual liberty, autonomy, privacy, informed consent and equal treatment can be overcome only for other legitimate ends (such as public security), and where there is relevant and compelling empirical evidence that the means are proportionate. To ensure that this is the case, and that it is managed in a transparent fashion, effective governance and regulation are essential. In making our recommendations, we are aware that fingerprinting and DNA profiling are part of a wider range of rapidly developing biometric technologies that have the potential for being combined into multi-modal identification systems. We are also aware that these technologies have other applications, such as in public health, medical and scientific research, immigration and passport systems, and for personal and corporate use. We have confined ourselves to an old (fingerprinting) and a new (DNA) technology in the context of criminal justice, both to keep the discussion within manageable proportions, and because this is currently the area of greatest controversy, but of little informed, in- depth study. Our aim is to provide a sound, principled analysis based on the available evidence. We have been greatly assisted by responses to the public consultation (see Appendix 2), and by a series of fact-finding meetings and a workshop with key stakeholders (see Appendix 1). We benefited from discussions with colleagues on the French National Consultative Bioethics Committee for Health and Life Sciences and the German National Ethics Council. (The French Committee published an Opinion (No. 98) entitled Biometrics, identifying data and human rights in April 2007, see Appendix 5.) I would like to express my personal thanks, and those of the Council, to the members of the Working Group, who gave unstintingly of their time and energy, and who worked patiently through many drafts, in order to produce this Report. Five peer reviewers made substantial comments, which we have tried to take into account. Our Project Manager, Carole McCartney of the University of Leeds, brought to her task not only her own expertise in this field but also an infectious enthusiasm, dedication and sense of humour, which enabled us to complete a substantial report within nine months. Thanks are also due to other members of the Secretariat, in particular Hugh Whittall, Catherine Moody, Harald Schmidt, Katharine Wright and Caroline Rogers, who have worked hard to bring this to fruition. Professor Sir Bob Hepple QC FBA v Acknowledgements The Council would like to thank the members of the Working Group for their considerable expertise and commitment in producing this Report. The Council is also grateful to a number of people who reviewed an earlier version: Professor Sarah Cunningham-Burley, Professor Mark Jobling, Professor Mike Parker, Professor Paul Roberts and Professor Mark Rothstein. We thank those who attended or hosted fact-finding meetings, including: Karen Squibb-Williams, Robert Green, Mike McMullen, Dr Ric Treble, David Charlton, Simon Moore, Geoff Whitaker, Matthew Greenhalgh, David Hartshorne, Tracy Shannon and Dr Colin Kimpton. The Working Group and the Council convey appreciation and thanks to all those who responded to the consultation by providing insightful and valuable submissions (see Appendix 2). We thank staff at the National Policing Improvement Agency (NPIA), in particular Andrew Davies, for providing helpful and timely answers to all questions put to him. vi Members of the Working Group Professor Sir Bob Hepple QC FBA (Chair) Emeritus Master of Clare College and Emeritus Professor of Law, University of Cambridge; Chairman of the Nuffield Council on Bioethics Mr Graham Cooke Barrister, King’s Bench Chambers, Bournemouth Professor Søren Holm Professorial Fellow in Bioethics, University of Cardiff;
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