Genetics and - Nuffield Bioethics

1 Published by Nuffield Council on Bioethics28 Bedford SquareLondon WC1B 3 JSTelephone: 020 7681 9619 Fax: 020 7637 1712 Internet: screening: ethical issuesPublished December 1993 human tissue: ethical and legal issuesPublished April 1995 Animal-to- human transplants: the ethics of xenotransplantationPublished March 1996 Mental disorders and Genetics : the ethical contextPublished September 1998 Genetically modified crops: the ethical and social issuesPublished May 1999 The ethics of clinical research in developing countries: a discussion paperPublished October 1999 Stem cell therapy: the ethical issues a discussion paperPublished April 2000 The ethics of research related to healthcare in developing countriesPublished April 2002 The ethics of patenting DNA: a discussion paperPublished July 2002 Genetics and human behaviour.

2 The ethical context Nuffield Council on BioethicsGenetics andhuman behaviourthe ethical contextCover final A/W13657 19/9/02 11:52 am Page 1 Published byNuffield Council on Bioethics28 Bedford SquareLondon WC1B 3 JSTelephone: 020 7681 9619 Fax:020 7637 1 904384 03 XOctober 2002 Price inc p + p (both national and international)Please send cheque in sterling with order payable to NuffieldFoundation Nuffield Council on Bioethics 2002 All rights reserved.

3 Apart from fair dealing for the purpose ofprivate study, research, criticism or review, no part of thepublication may be produced, stored in a retrieval system ortransmitted in any form, or by any means, without prior permissionof the copyright by dsprint/redesign7 Jute LaneBrimsdownEnfield EN3 7JL Printed byLatimer Trend & Company Ltd Estover Road Plymouth PL6 7 PLCover final A/W13657 19/9/02 11:52 am Page 2 Genetics andhumanbehaviour: theethical contextPRELIMS 13657 17/9/02 9:20 am Page iiiPRELIMS 13657 17/9/02 9.

4 20 am Page iiiiiNuffield Council on BioethicsProfessor Sir Ian Kennedy(Chairman)Professor Martin Bobrow CBE (Deputy Chairman)Professor Tom BaldwinMs Rebecca Burke CBEP rofessor Sir Kenneth Calman KCB FRSEThe Rt Rev Richard Harries DD FKC FRSLP rofessor Bob Hepple QCProfessor John LedinghamProfessor Catherine Peckham CBEP rofessor Martin RaffMr Nick RossProfessor Herbert SewellProfessor Dame Marilyn Strathern FBAP rofessor Albert Weale FBADr Alan Williamson FRSES ecretariatDr Sandy Thomas (Director)Ms Tor LezemoreMs Susan Bull (until April 2002)Mr Harald Schmidt (from May 2002)Mrs Julia FoxMs Yvonne Melia (until April 2002)Ms Natalie Bartle (from June 2002)Ms Nicola PerrinMs Elaine Talaat-AbdallaMs Maria Gonzalez-NogalThe terms of reference are as follows:1to identify and define ethical questions raised by recent advances in biological and medicalresearch in order to respond to, and to anticipate, public concern.

5 2to make arrangements for examining and reporting on such questions with a view topromoting public understanding and discussion; this may lead, where needed, to theformulation of new guidelines by the appropriate regulatory or other body;3in the light of the outcome of its work, to publish reports; and to make representations, as theCouncil may judge Nuffield Council on Bioethics is funded jointly by the Medical Research Council, the Nuffield Foundation and the Wellcome TrustPRELIMS 13657 17/9/02 9:20 am Page iiiivPRELIMS 13657 17/9/02 9:20 am Page ivvPrefaceI was apprehensive when asked by the Nuffield Council on Bioethics to chair the WorkingParty which has produced this Report.

6 First, because the subject has an ugly history: withinliving memory perverted science was put at the service of ideologies that led to thesubjugation and even extermination of people judged to be genetically inferior .Secondly, because modern behavioural Genetics is rich in promise but, as yet, poor in hardverifiable evidence. Thirdly, because it seemed unlikely that one would be able to reachany agreed recommendations in this highly complex and controversial these fears have been dispelled over the past two years in which the Working Partyhas met eleven times, held six fact-finding sessions with more than twenty experts,commissioned reviews of the scientific evidence, and undertaken a public became clear that this investigation, believed to be the first of its kind.

7 Is necessary ifwe want to avoid the mistakes of the past, make an impartial assessment of theemerging scientific evidence, and reach valid moral and legal conclusions about thepotential applications of the research. The agreed recommendations are important, butperhaps even more significant are the careful explanation that we have attempted togive of the methods of research in this area, the assessment of the current evidence forgenetic influences on behaviour, and the balanced discussion of the ethical and legalchoices that lie ahead.

8 Our expectation is that this Report will help non-specialists tounderstand what behavioural Genetics aspires to achieve, what has thus far beenachieved and equally importantly, how much has not yet been achieved. We hope thatit will promote an informed debate between scientists, policy makers, and the lay publicabout the ethical and legal should like to thank the members of the Working Party for their hard work anddedication; working with them was an enjoyable and stimulating experience.

9 We are allgrateful to Dr Sandy Thomas, Director of the Nuffield Council on Bioethics , for herguidance and sound judgment. Tor Lezemore made a truly outstanding contribution as ourinventive scribe, editor and secretary; her sparkling humour and enthusiasm kept us are also due to Julia Fox, Yvonne Melia, Susan Bull, Natalie Bartle and Nicola Perrinfor their support. Finally, since this is the last Report which will be published under Sir IanKennedy s chairmanship of the Nuffield Council on Bioethics , I should like to pay tribute tohis enormous contribution to Bioethics in general, and to his role as mentor of thisWorking Party in Hepple QCPRELIMS 13657 17/9/02 9.

10 20 am Page vviAcknowledgementsThe Working Party wishes to thank the many organisations and individuals who haveassisted its work, particularly those who attended fact-finding meetings or submittedresponses to the public consultation. The Working Party is very grateful to Professor SirRobert Hinde, Professor Erik Parens, Professor Nikolas Rose, Tim Radford and ProfessorSir Michael Rutter, who all reviewed an earlier draft of the Report. Their commentscontained constructive criticisms and suggestions for further discussion, which wereextremely helpful.