Genetic screening: ethical issues - Nuffield Council on Bioethics

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98 CHAPTER 6 1. Haldane J Heredity and Politics. Allen and Unwin, London, 1938, p 179, as cited in Murray T H, “The Human Genome Project and <strong>Genetic</strong> Testing: Ethical Implications” in The Genome, Ethics and the Law (American Association for the Advancement of Science, Washington DC, 1992) p 62. 2. Murray T, ibid, p63. 3. Congress of the United States Office of Technology Assessment (1983). The role of genetic testing in the prevention of occupational disease. US Government Printing Office, Washington DC. 4. Congress of the United States Office of Technology Assessment (1990). <strong>Genetic</strong> monitoring and <strong>screening</strong> in the workplace. US Government Printing Office, Washington DC. 5. Disabled Persons (Employment) Act 1944. 6. Health and Safety at Work etc Act 1974, ss 10-14. 7. The Danish <strong>Council</strong> of Ethics (1993) Ethics and the mapping of the human genome. p 85. 8. Robertson J, “Legal Issues in <strong>Genetic</strong> Testing” in The Genome, Ethics and the Law, pp 96-97 (see Note 1 above). CHAPTER 7 1. Fisher R (1935) Linkage studies and the prognosis of hereditary ailments. International Congress on Life Assurance Medicine. London, pp 1-3. 2. Association of British Insurers. Submission to Working Party on <strong>Genetic</strong> Screening. 11 June 1992, pp 1-2. 3. US Congress Office of Technology Assessment. <strong>Genetic</strong> tests and health insurance : results of a survey. Washington DC. US Government Printing Office, 1992. CHAPTER 8 1. Department of Health (1993) Population needs and genetic services. Circulated under cover of PL/CMO(93)5 and PL/CNO(93)4. Available from Department of Health Store, Health Publications Unit, No 2 Site, Manchester Road, Heywood, Lancashire OL10 2PZ. 2. Watson E et al (1992) Psychological and social consequences of community carrier <strong>screening</strong> for cystic fibrosis. Lancet 1992;340:217-20. 3. Burn J (1993) Screening for cystic fibrosis in primary care. BMJ 1993;306:1558-9.
Submissions received (1992) 99 Association of British Insurers British Medical Association Cancer Research Campaign CARE (Christian Action Research and Education) Christian Medical Fellowship Church of England General Synod Cystic Fibrosis Trust Ehlers-Danlos Support Group Faculty of Public Health Medicine Fragile X Society <strong>Genetic</strong>s Forum Medical Research <strong>Council</strong> MENCAP Muscular Dystrophy Group Unilever UK Thalassaemia Society
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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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Genetic screening: ethical issues - Nuffield Council on Bioethics

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