Genetic screening: ethical issues - Nuffield Council on Bioethics

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100 Official legislative and professional texts on genetic <strong>screening</strong> considered in the drafting of the report 1 UK Cabinet Office : ACOST : Report on Medical Research and Health: Task Force on Screening, Diagnosis and Prevention (1993) Department of Health : Population Needs and <strong>Genetic</strong> Services: an outline guide (1993) Royal College of Physicians : Prenatal Diagnosis and <strong>Genetic</strong> Screening : Community and Service Implications (1989) Royal College of Physicians : Clinical <strong>Genetic</strong>s Committee - Clinical <strong>Genetic</strong> Services in 1990 and Beyond (1991) Royal College of Physicians : Clinical <strong>Genetic</strong>s Committee - The Retention of Medical Records in Relation to <strong>Genetic</strong> Diseases (1991) Royal College of Physicians : Clinical <strong>Genetic</strong>s Committee - Purchasers’ Guidelines to <strong>Genetic</strong> Services in the NHS (1991) Royal College of Physicians : Committees on Ethical Issues in Medicine and Clinical <strong>Genetic</strong>s - Ethical Issues in Clinical <strong>Genetic</strong>s (1991) 2 International bodies <strong>Council</strong> for International Organizations of Medical Sciences : <strong>Genetic</strong>s, Ethics and Human Values : Proceedings of the XXIVth CIOMS Conference (Geneva, 1991) World Medical Association : Declaration on the Human Genome Project (1992)
101 3 European community European Commission : Working Group on the Ethical, Social and Legal Aspects of Human Genome Analysis - Report of 31 December 1991 European Parliament : Committee on Energy, Research and Technology - Draft Report on the Ethical Aspects of New Biomedical Technologies, Particularly Prenatal Diagnosis (1993) 4 <strong>Council</strong> of Europe <strong>Council</strong> of Europe : Recommendation of the Committee of Ministers to Member States on <strong>Genetic</strong> Testing and Screening for Health Care Purposes (1992) <strong>Council</strong> of Europe : Recommendations on use of DNA analysis within the Criminal Justice System (1992) 5 Other countries Australia: Victoria State : Law Reform Commission - Report on <strong>Genetic</strong> Manipulation (1989) House of Representatives : Standing Committee on Industry, Science and Technology - <strong>Genetic</strong> Manipulation: The Threat or the Glory? (1992) National Health and Medical Research <strong>Council</strong> : Guidelines for the Use of <strong>Genetic</strong> Registers in Medical Research Canada: Privacy Commissioner : <strong>Genetic</strong> Testing and Privacy (1992) Science <strong>Council</strong> of Canada : <strong>Genetic</strong>s in Canadian Health Care (1991) Denmark: Danish <strong>Council</strong> of Ethics : <strong>Genetic</strong> Testing in Appointments etc (1993)
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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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Genetic screening: ethical issues - Nuffield Council on Bioethics

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