Genetic screening: ethical issues - Nuffield Council on Bioethics

More documents

Recommendations

Info

32 4.10 A number of pilot <strong>screening</strong> projects for cystic fibrosis recently carried out have addressed with great thoroughness many of the problems of obtaining informed consent. We have therefore drawn extensively on their experience. The leaflet used in approaching people about <strong>screening</strong> in a London general practice (Fig B) 3 provides answers to the following questions: what is the nature of the disease? what is a carrier? what are the chances that I will be a carrier? what are the chances that I will have a child with the disease? is it important for me to tell my partner? The question “What does it mean to be a carrier?” is explained in another leaflet given to those whose test is positive. Fig B Leaflet issued in a London general practice
4.11 A question and answer sheet used in Manchester (Fig C) 4 goes into the issue of informing other family members. It also raises a question about insurance : the comforting answer, though it may be correct for cystic fibrosis and perhaps other recessively inherited disorders, does not apply to all areas of genetic <strong>screening</strong>. (The <strong>ethical</strong> <strong>issues</strong> relating to insurance are discussed in Chapter 7.) Fig C 33 Leaflet issued in Manchester and other North-West general practices
Page 1 and 2: NUFFIELD COUNCIL ON BIOETHICS GENET
Page 3: NUFFIELD COUNCIL ON BIOETHICS GENET
Page 6 and 7: ii The broad framework provided as
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
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 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
Page 58 and 59: 48 5.22 Do additional measures need
Page 60 and 61: 50 muscular dystrophy may not wish
Page 62 and 63: 52 (i) (ii) (iii) a genetic registe
Page 65 and 66: 55 Chapter 6 Employment Introductio
Page 67 and 68: 6.7 There are also foreseeable circ
Page 69 and 70: ecause of its discriminatory impact
Page 71 and 72: 61 that at the present time there i
Page 73 and 74: 63 legal regulation does not appear
Page 75 and 76: 65 Chapter 7 Insurance Introduction
Page 77 and 78: 7.7 Life insurance and health insur
Page 79 and 80: 7.17 Commercial competitiveness in
Page 81 and 82: 7.25 According to the ABI’s posit
Page 83 and 84: 7.34 If insurance companies are to
Page 85 and 86: 75 Chapter 8 Genetic</stron
Page 87 and 88: 77 What are the dangers of stigmati
Page 89 and 90: 79 easier to accept and deal with o
Page 91: 8.22 As it becomes feasible to test
Page 94 and 95:
84 9.3 We emphasise that there shou
Page 97 and 98:
87 Chapter 10 Conclusions 10.1 We s
Page 99 and 100:
counsellors) in particular among th
Page 101 and 102:
91 (iii) the condition is one for w
Page 103:
10.20 We recommend that the Departm
Page 106 and 107:
96 References CHAPTER 1 1. Mennie M
Page 108 and 109:
98 CHAPTER 6 1. Haldane J Heredity
Page 110 and 111:
100 Official legislative and profes
Page 112 and 113:
102 France: Comité Consultatif Nat
Page 114 and 115:
104 Scientific terms Only those ter
Page 116 and 117:
106 Recessive The form of inheritan
Page 118 and 119:
108 Congenital hypothyroidism Mode
Page 120 and 121:
110 but to a lesser degree : about
Page 122 and 123:
112 Hypertrophic cardiomyopathy Mod
Page 124 and 125:
114 Tay-Sachs disease Mode of inher
Page 126 and 127:
116
Page 130:
Nuffield C
show all

Genetic screening: ethical issues - Nuffield Council on Bioethics

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?