genetics and human behaviour the ethical context - nuffield council

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genetics and human behaviour the ethical context - nuffield council

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Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Telephone: 020 7681 9619 Fax: 020 7637 1712 Internet: www.nuffieldbioethics.org Genetic screening: ethical issues Published December 1993 Human tissue: ethical and legal issues Published April 1995 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 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 Nuffield Council on Bioethics Genetics and human behaviour the ethical context Cover final A/W13657 19/9/02 11:52 am Page 1 Published by Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Telephone: 020 7681 9619 Fax: 020 7637 1712 Email: bioethics@nuffieldfoundation.org Website: http://www.nuffieldbioethics.org ISBN 1 904384 03 X October 2002 Price £3.00 inc p + p (both national and international) Please send cheque in sterling with order payable to Nuffield Foundation © Nuffield Council on Bioethics 2002 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. Designed by dsprint/redesign 7 Jute Lane Brimsdown Enfield EN3 7JL Printed by Latimer Trend & Company Ltd Estover Road Plymouth PL6 7PL Cover final A/W13657 19/9/02 11:52 am Page 2 Genetics and human behaviour: the ethical context PRELIMS 13657 17/9/02 9:20 am Page i ii PRELIMS 13657 17/9/02 9:20 am Page ii iii Nuffield Council on Bioethics Professor Sir Ian Kennedy (Chairman) Professor Martin Bobrow CBE (Deputy Chairman) Professor Tom Baldwin Ms Rebecca Burke CBE Professor Sir Kenneth Calman KCB FRSE The Rt Rev Richard Harries DD FKC FRSL Professor Bob Hepple QC Professor John Ledingham Professor Catherine Peckham CBE Professor Martin Raff Mr Nick Ross Professor Herbert Sewell Professor Dame Marilyn Strathern FBA Professor Albert Weale FBA Dr Alan Williamson FRSE Secretariat Dr Sandy Thomas (Director) Ms Tor Lezemore Ms Susan Bull (until April 2002) Mr Harald Schmidt (from May 2002) Mrs Julia Fox Ms Yvonne Melia (until April 2002) Ms Natalie Bartle (from June 2002) Ms Nicola Perrin Ms Elaine Talaat-Abdalla Ms Maria Gonzalez-Nogal The terms of reference are as follows: 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 PRELIMS 13657 17/9/02 9:20 am Page iii iv PRELIMS 13657 17/9/02 9:20 am Page iv v Preface I was apprehensive when asked by the Nuffield Council on Bioethics to chair the Working Party which has produced this Report. First, because the subject has an ugly history: within living memory perverted science was put at the service of ideologies that led to the subjugation and even extermination of people judged to be genetically ‘inferior’. Secondly, because modern behavioural genetics is rich in promise but, as yet, poor in hard verifiable evidence. Thirdly, because it seemed unlikely that one would be able to reach any agreed recommendations in this highly complex and controversial field. All these fears have been dispelled over the past two years in which the Working Party has met eleven times, held six fact-finding sessions with more than twenty experts, commissioned reviews of the scientific evidence, and undertaken a public consultation. It became clear that this investigation, believed to be the first of its kind, is necessary if we want to avoid the mistakes of the past, make an impartial assessment of the emerging scientific evidence, and reach valid moral and legal conclusions about the potential applications of the research. The agreed recommendations are important, but perhaps even more significant are the careful explanation that we have attempted to give of the methods of research in this area, the assessment of the current evidence for genetic influences on behaviour, and the balanced discussion of the ethical and legal choices that lie ahead. Our expectation is that this Report will help non-specialists to understand what behavioural genetics aspires to achieve, what has thus far been achieved and equally importantly, how much has not yet been achieved. We hope that it will promote an informed debate between scientists, policy makers, and the lay public about the ethical and legal implications. I should like to thank the members of the Working Party for their hard work and dedication; working with them was an enjoyable and stimulating experience. We are all grateful to Dr Sandy Thomas, Director of the Nuffield Council on Bioethics, for her guidance and sound judgment. Tor Lezemore made a truly outstanding contribution as our inventive scribe, editor and secretary; her sparkling humour and enthusiasm kept us going. Thanks are also due to Julia Fox, Yvonne Melia, Susan Bull, Natalie Bartle and Nicola Perrin for their support. Finally, since this is the last Report which will be published under Sir Ian Kennedy’s chairmanship of the Nuffield Council on Bioethics, I should like to pay tribute to his enormous contribution to bioethics in general, and to his role as mentor of this Working Party in particular. Bob Hepple QC PRELIMS 13657 17/9/02 9:20 am Page v vi Acknowledgements The Working Party wishes to thank the many organisations and individuals who have assisted its work, particularly those who attended fact-finding meetings or submitted responses to the public consultation. The Working Party is very grateful to Professor Sir Robert Hinde, Professor Erik Parens, Professor Nikolas Rose, Tim Radford and Professor Sir Michael Rutter, who all reviewed an earlier draft of the Report. Their comments contained constructive criticisms and suggestions for further discussion, which were extremely helpful. The Working Party would like to thank the following individuals from whom it commissioned papers reviewing the scientific evidence in research in behavioural genetics: Professor John Crabbe, Professor Jeffery Gray, Professor Nicholas Mackintosh and Professor Terrie Moffitt. The Working Party is also grateful to individuals who responded to requests for advice on specific parts of the Report, including Dr Jonathan Flint, Mrs Nicola Padfield and Professor Mark Rothstein. PRELIMS 13657 17/9/02 9:20 am Page vi vii Table of Contents Council membership and terms of reference iii Preface v Acknowledgements vi Working Party membership xiii Working Party terms of reference xv Summary and recommendations xix Section I: Introduction and context Chapter 1: Introduction 3 Why this Working Party is important 5 Defining the normal range of behavioural characteristics 7 The scope of research in behavioural genetics 8 The structure of the Report 8 Chapter 2: The historical context 11 The impact of eugenic thought on research into human behaviour 18 Psychology in the first half of the twentieth century 18 Psychology from the 1960s onwards 20 Individual differences 20 Evolutionary psychology 21 Processes of development 21 Conclusion 22 Section II: Scientific background Chapter 3: Research in behavioural genetics 25 Introduction 27 What is genetic variation? 29 What is meant by normal variation in human behaviour? 31 ‘A gene for X’? 32 Describing human behaviour 35 Predicting human behaviour from genetic information 35 Conclusion 36 Chapter 4: Quantitative genetics: measuring heritability 37 Introduction 39 How is population variation examined using genetic studies? 39 Genetic influences on variation 39 Genetics and human behaviour: the ethical context PRELIMS 13657 17/9/02 9:20 am Page vii viii Environmental influences on variation 41 Gene-environment correlation and interaction 41 Family, twin and adoption studies 42 Family studies 42 Studies of twins 42 Methods 42 Interpretation of twin study findings 43 Adoption studies 44 Current uses of quantitative genetic studies 45 Conclusion 46 Chapter 5: Identifying genetic factors contributing to individual differences in behaviour . 47 Introduction 49 Approaches to identifying susceptibility alleles 49 Linkage studies 50 Association studies 51 Identification of alleles that influence behaviour 52 Scaling up the analysis: new methods in genetics 52 Conclusion 53 Chapter 6: Research in behaviour genetics involving animals 55 Introduction 57 How are animal models created? 58 What are the benefits of using animals to study the genetics of human behaviour? 60 What are the problems with using animals to study the genetics of human behaviour? 61 Conclusion 63 Part III: Reviews of the evidence Chapter 7: Intelligence 67 Background 69 Trait definition and measurement 69 Current findings: quantitative genetics 71 Current findings: molecular genetics 73 Directions for future research 76 Chapter 8: Personality 79 Background 81 Trait definition and measurement 81 Current findings: quantitative genetics 83 Current findings: molecular genetics 84 Quantitative trait loci research 85 Current findings: research involving animals 85 Future directions for research 86 PRELIMS 13657 17/9/02 9:20 am Page viii [...]... interventions as a result of them, and therefore, that there is no point in discussing the ethics of their application We take the view that these considerations do not exempt us from xxiv Summary and Rec 13657 16/9/02 6:22 pm Page xxv Genetics and human behaviour: the ethical context As the reviews of the evidence in chapters 7-1 1 indicate, fatalism about genetics is a misconception Even when behavioural traits... 9:20 am Page xv Genetics and human behaviour: the ethical context Terms of reference 1 To define and consider ethical, social and legal issues arising from the study of the genetics of variation within the normal range of behavioural characteristics.1 2 To survey the current field of research, in particular, to review: a the evidence for the relative importance of genetic influences; b the basis for... the normal range s Employees should be selected and promoted on the basis of their ability to meet the requirements of the job, and they should be monitored to ensure that their performance meets those requirements xxxii Summary and Rec 13657 16/9/02 6:22 pm Page xxxiii Genetics and human behaviour: the ethical context We note, with some concern, that the implications for education of research in behavioural... of research in genetics which falls outside the medical sphere The objectives of the Working Party established by the Council in 2000 were to define and consider the ethical, legal and social issues arising from the study of the genetics of variation within the normal range of behaviour characteristics The subject of this Report is human behaviour within the normal range, as opposed to traits that... traits xix Summary and Rec 13657 16/9/02 6:22 pm Page xx Genetics and human behaviour: the ethical context which is thought not to contain any individuals with clinical disorders or diseases There are other approaches to defining normal behaviour They include the theory that abnormal behaviour is that which results in impaired function in society for the individual, either from the individual’s own... Page xxiv Genetics and human behaviour: the ethical context s It is difficult to equate directly the richness of complex human traits such as intelligence, personality and sexual orientation with the behaviour of animals This may limit the potential value of the research s For these reasons, caution should be exerted when hypothesising that genes studied in research involving animals will have the same... the research in all the areas described and highlighted some central themes that emerge These inform our consideration of the ethical, legal, social and policy issues to which the research gives rise The central themes that emerge are: – the difficulty of defining and measuring behavioural traits; – the dangers of the misinterpretation and misapplication of heritability estimates; – the lack of replicated... influence behaviour Ethical issues arising from research in behavioural genetics Free will and human dignity We conclude there is no inherent conflict between a greater understanding of genetic contributions to behaviour and due regard for human dignity A non-reductive, rationalist, understanding of human freedom can coexist with recognition of the genetic influences on our human abilities, capacities and. .. alongside the scientific perspective employed by behaviour geneticists It is not necessary here to take a stand on this debate But any sensible understanding of human freedom and dignity must allow for some starting-point in the development of the abilities which are central to this freedom and dignity Behavioural genetics promises to elucidate this starting-point, and thereby contribute to the understanding... antisocial behaviour and sexual orientation The principal themes that emerge from the reviews of the evidence are summarised in Chapter 11 The Report has been written so that readers not wishing to digest the scientific information contained in the reviews of the evidence can refer to Chapter 11 instead, without compromising their understanding of the Report The third part of the Report examines the ethical, . xiv xv Genetics and human behaviour: the ethical context Terms of reference 1 To define and consider ethical, social and legal issues arising from the study of the genetics of variation within the. behaviour : the ethical context Nuffield Council on Bioethics Genetics and human behaviour the ethical context Cover final A/W13657 19/9/02 11:52 am Page 1 Published by Nuffield Council on Bioethics 28. 1993 Human tissue: ethical and legal issues Published April 1995 Animal-to -human transplants: the ethics of xenotransplantation Published March 1996 Mental disorders and genetics: the ethical context Published

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