Genetic screening: ethical issues - Nuffield Council on Bioethics

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102 France: Comité Consultatif National d’Éthique : Avis N o 25 (1991) ‘Les tests génétiques’ Avis N o 33 (1993) ‘Le recensement des glaucomateux on France’ Rapport au Premier Ministre : Aux frontières de la vie : Noëlle Lenoir (1991) Netherlands: Health <strong>Council</strong> of the Netherlands : Heredity : Science and Society (1989) USA: American Association for the Advancement of Science: The Genome, Ethics and the Law : Issues in <strong>Genetic</strong> Testing (AAAS, 1992) American <strong>Council</strong> of Life Insurance / Health Insurance Association of America : Report of the ACLI-HIAA Task Force on <strong>Genetic</strong> Testing (1991) American <strong>Council</strong> of Life Insurance : Report of the ACLI Subcommittee on Privacy Legislation to the Task Force on <strong>Genetic</strong> Testing - <strong>Genetic</strong> Test Information and Insurance: Confidentiality Concerns and Recommendations California State Assembly : Legislation concerning dis- crimination (employment, insurance and civil rights) against those suffering a genetic predisposition to disability. (1992) House of Representatives : Sixteenth Report - Designing <strong>Genetic</strong> Information Policy : The Need for an Independent Policy Review of the Ethical, Legal, and Social Implications of the Human Genome Project (1992) Office of Technology Assessment : Cystic Fibrosis and DNA Tests : Implications of Carrier Screening (1992) Office of Technology Assessment : <strong>Genetic</strong> Counseling and Cystic Fibrosis Carrier Screening: Results of a Survey (1992) Office of Technology Assessment : <strong>Genetic</strong> Monitoring and Screening in the Workplace (1990) Office of Technology Assessment : <strong>Genetic</strong> Tests and Health Insurance : Results of a Survey (1992) Task Force on <strong>Genetic</strong>s and Insurance : Working Group on Ethical, Legal and Social Issues, Human Genome Project - Interim Report (1992)
Glossary 103 Page Scientific terms 104 Diseases 107 Adrenoleukodystrophy (ALD) 107 Alpha-1-antitrypsin deficiency 107 Breast cancer 107 Congenital disorders 107 Congenital hypothyroidism 108 Cystic fibrosis (CF) 108 Down’s syndrome 108 Duchenne muscular dystrophy 108 Familial colorectal cancer 109 Familial hypercholesterolaemia 109 Fragile X syndrome 109 Glucose-6-phosphate dehydrogenase deficiency 110 Haemoglobin disorders : 110 Sickle cell disease 110 Thalassaemia 111 Haemophilia 111 Huntington’s disease 111 Hypertrophic cardiomyopathy 112 Neural tube defects : 112 Anencephaly 112 Spina bifida 112 Phenylketonuria (PKU) 112 Polycystic kidney disease 113 Rhesus haemolytic disease 113 Rubella 113 Tay-Sachs disease 114 Turner’s syndrome 114 Procedures for antenatal testing 115 Amniocentesis 115 Chorionic villus sampling (CVS) 115 Fetal blood and tissue sampling 115 Ultrasound 115
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NUFFIELD COUNCIL ON BIOETHICS GENET
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NUFFIELD COUNCIL ON BIOETHICS GENET
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ii The broad framework provided as
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Terms of reference iv The terms of
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vi Page Chapter 7 : INSURANCE 65 Li
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2 the ways in which groups have bee
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4 Both programmes identify potentia
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6 the size of that risk depends on
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8 In addition to the genetic contri
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10 Chromosomal disorders 2.6 Chromo
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12 2.13 Major scientific advances h
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15 Chapter 3 Genetic</stron
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17 if it develops. It is therefore
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any major ethical
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21 Tay-Sachs concluded that “stud
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an X-linked disorder or if either p
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25 children born to younger women (
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27 CURRENT GENETIC SCREENING PROGRA
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30 relatively small numbers of peop
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32 4.10 A number of pilot s
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34 4.12 Two of the cystic fibrosis
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36 Counselling and consent 4.17 In
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38 4.22 Although the training and s
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40 Conclusions and recommendations
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42 future decisions about having ch
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44 The importance of confidentialit
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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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Genetic screening: ethical issues - Nuffield Council on Bioethics

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