Genetic screening: ethical issues - Nuffield Council on Bioethics

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Terms of reference iv The terms of reference were as follows:- (1) to survey and report on recent and prospective advances in genetic <strong>screening</strong> and its applications; (2) to review experience to date of current and potential benefits and difficulties of genetic <strong>screening</strong> and associated counselling; (3) to identify, define and discuss the <strong>ethical</strong> <strong>issues</strong> affecting both individuals and society which arise, or may arise in future from genetic <strong>screening</strong>, including such matters as:- (a) (b) (c) (d) (e) (f) the general risk of stigma attaching or being attached to those perceived as genetically disadvantaged; the handling and holding of information; consent to being screened; confidentiality in all its aspects; the implications for employment and insurance; the storage and use of genetic information for legal purposes.
v Table of Contents Page Chapter 1 : INTRODUCTION 1 Chapter 2 : SCIENTIFIC BASIS 7 What genes are 7 The scientific basis of genetic <strong>screening</strong> : types of disorder 7 Types of genetic tests 10 The importance of genetic variation 13 Chapter 3 : GENETIC SCREENING : CURRENT PROGRAMMES 15 Principles of genetic <strong>screening</strong> programmes 17 Existing <strong>screening</strong> programmes 18 Table of current genetic <strong>screening</strong> programmes in the UK 27 Chapter 4 : PROVIDING INFORMATION AND OBTAINING CONSENT 29 Information 30 Counselling and consent 36 Persons requiring special safeguards 38 Conclusions and Recommendations 40 Chapter 5 : THE RESULTS OF GENETIC SCREENING AND CONFIDENTIALITY 41 Disclosure to the individual 41 Disclosure to family members 42 The importance of confidentiality 44 Legal protection of genetic information 45 Professional codes of conduct 47 Disclosure of genetic information 48 The <strong>ethical</strong> dilemmas 48 <strong>Genetic</strong> registers 51 Conclusions and Recommendations 53 Chapter 6 : EMPLOYMENT 55 Possible reasons for genetic testing in employment 56 The legal framework 58 The practice of genetic <strong>screening</strong> in employment 59 Ethical <strong>issues</strong> 61 A need for further legal provision? 62 Conclusions and Recommendations 64
Page 1 and 2: NUFFIELD COUNCIL ON BIOETHICS GENET
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Page 6 and 7: ii The broad framework provided as
Page 10 and 11: vi Page Chapter 7 : INSURANCE 65 Li
Page 12 and 13: 2 the ways in which groups have bee
Page 14 and 15: 4 Both programmes identify potentia
Page 16 and 17: 6 the size of that risk depends on
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
Page 42 and 43: 32 4.10 A number of pilot s
Page 44 and 45: 34 4.12 Two of the cystic fibrosis
Page 46 and 47: 36 Counselling and consent 4.17 In
Page 48 and 49: 38 4.22 Although the training and s
Page 50 and 51: 40 Conclusions and recommendations
Page 52 and 53: 42 future decisions about having ch
Page 54 and 55: 44 The importance of confidentialit
Page 56 and 57: 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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116
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Nuffield C
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Genetic screening: ethical issues - Nuffield Council on Bioethics

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