Genetic screening: ethical issues - Nuffield Council on Bioethics

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ii The broad framework provided as a safeguard against potential eugenic abuse. Better public understanding of, and education about, genetics are essential. So too are the recommendations proposed on informed consent, confidentiality and the central coordination and monitoring of genetic <strong>screening</strong> programmes. The report could not hope to identify exhaustively, let alone answer, all the <strong>ethical</strong> questions which may confront individuals, families and professionals. But it does outline <strong>ethical</strong> policies and procedures which should help people to answer the questions and make the decisions which are important for them. The report is not a consultation document, but the <strong>Council</strong> will welcome and consider views and comments. It intends to publish next year a shorter popular version. This will assist the public discussions of the report which the <strong>Council</strong> plans to arrange in London and elsewhere. Rt Hon Sir Patrick Nairne GCB MC Chairman <strong>Nuffield</strong> <strong>Council</strong> on Bioethics <strong>Nuffield</strong> <strong>Council</strong> on Bioethics Rt Hon Sir Patrick Nairne GCB MC Chairman Mrs Beverly Anderson Miss Margaret Auld Professor Canon Gordon Dunstan CBE Professor John Gurdon Professor Eve Johnstone Professor Ian Kennedy Dr Anne McLaren DBE Mrs Caroline Miles Dr Brian Newbould Dr Onora O’Neill Miss Jane Reed Professor Dame Margaret Turner-Warwick DBE Professor Sir David Weatherall Professor Sir David Williams
iii Working Party on <strong>Genetic</strong> Screening Professor Dame June Lloyd DBE Chairman formerly <strong>Nuffield</strong> Professor of Child Health in the University of London Dr Elizabeth Anionwu Lecturer in Community <strong>Genetic</strong> Counselling at the Institute of Child Health, London Professor Keith Ewing Professor of Public Law, King’s College, London Mrs Lesley Greene Director of Support Services, Research Trust for Metabolic Diseases in Children Professor Peter Harper Professor of Medical <strong>Genetic</strong>s at the University of Wales College of Medicine, Cardiff Dame Anne McLaren DBE Principal Research Associate at the Wellcome/ CRC Institute of Cancer and Developmental Biology, Cambridge Mrs Caroline Miles Ian Ramsey Fellow, St Cross College, Oxford and formerly Chairman of Oxfordshire Health Authority Dr Bernadette Modell Consultant in Perinatal Medicine, University College and Middlesex Medical School, London Secretariat Mr David Shapiro Mr Harry Parker (February - October 1993) Mrs Jill Batty
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Page 8 and 9: Terms of reference iv The terms of
Page 10 and 11: vi Page Chapter 7 : INSURANCE 65 Li
Page 12 and 13: 2 the ways in which groups have bee
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Page 18 and 19: 8 In addition to the genetic contri
Page 20 and 21: 10 Chromosomal disorders 2.6 Chromo
Page 22 and 23: 12 2.13 Major scientific advances h
Page 25 and 26: 15 Chapter 3 Genetic</stron
Page 27 and 28: 17 if it develops. It is therefore
Page 29 and 30: any major ethical
Page 31 and 32: 21 Tay-Sachs concluded that “stud
Page 33 and 34: an X-linked disorder or if either p
Page 35 and 36: 25 children born to younger women (
Page 37: 27 CURRENT GENETIC SCREENING PROGRA
Page 40 and 41: 30 relatively small numbers of peop
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Page 46 and 47: 36 Counselling and consent 4.17 In
Page 48 and 49: 38 4.22 Although the training and s
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46 interest may be outweighed by so
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48 5.22 Do additional measures need
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50 muscular dystrophy may not wish
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52 (i) (ii) (iii) a genetic registe
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55 Chapter 6 Employment Introductio
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6.7 There are also foreseeable circ
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ecause of its discriminatory impact
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61 that at the present time there i
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63 legal regulation does not appear
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65 Chapter 7 Insurance Introduction
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7.7 Life insurance and health insur
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7.17 Commercial competitiveness in
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7.25 According to the ABI’s posit
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7.34 If insurance companies are to
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75 Chapter 8 Genetic</stron
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77 What are the dangers of stigmati
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79 easier to accept and deal with o
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8.22 As it becomes feasible to test
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84 9.3 We emphasise that there shou
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87 Chapter 10 Conclusions 10.1 We s
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counsellors) in particular among th
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91 (iii) the condition is one for w
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10.20 We recommend that the Departm
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96 References CHAPTER 1 1. Mennie M
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98 CHAPTER 6 1. Haldane J Heredity
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100 Official legislative and profes
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102 France: Comité Consultatif Nat
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104 Scientific terms Only those ter
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106 Recessive The form of inheritan
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108 Congenital hypothyroidism Mode
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110 but to a lesser degree : about
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112 Hypertrophic cardiomyopathy Mod
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114 Tay-Sachs disease Mode of inher
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Nuffield C
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