bioethics - Ethical, Legal, and Social Implications of HGP...

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1 Ethical, Legal, and Social Issues raised by Human Genome Project Research Ethical, Legal, and Social Implications of HGP Research • fairness in the use of genetic information • privacy and confidentiality • psychological impact and stigmatization • genetic testing • reproductive issues • education, standards, and quality control • commercialization • conceptual and philosophical implications ELSI: Fairness and Privacy • Who should have access to one’s genetic information? • How should it be used? • Who owns and controls it? • Consider these would-be owners: – insurers, employers, courts, schools, adoption agencies, the military ELSI: Psychological Stigmatization • How does knowing one’s predisposition to disease affect an individual? • How does it affect friends’ and family’s perceptions of that individual? • How does it affect society's perceptions of that individual? ELSI: Genetic Testing • Should testing be done only when there is a family history to make informed prenatal / diagnosis decisions? • Should population screening be done? – (newborn, premarital, and occupational) • Should testing be done when no treatment is available? ELSI: Genetic Testing • Should testing be done for susceptibility genes? – role of environmental factors in disease development • Should parents have the right to have their minor children tested for adult -onset diseases? • Are current genetic tests reliable and interpretable by
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2 ELSI: Reproductive Issues • informed consent for procedures • use of genetic information in decision making • reproductive rights ELSI: Conceptual and Philosophical Implications • human responsibility • free will versus genetic determinism • concepts of disease and health ELSI: Commercialization • property rights • patents, copyrights and trade secrets • accessibility of data and materials ELSI: Clinical Issues • education of health service providers, patients, and the general public • implementation of standards and quality control measures in testing procedures Martin Needs Medical Treatment (or does he?) Martin came home from school the other day with a black eye and broken glasses. Another boy had called him a freak and punched him. Martin is albino , which means that his skin has no color. He is very pale and his hair is white. His eyes are pink and he doesn't see very well. Martin's mother loves her son very much just the way he is.
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This note was uploaded on 04/15/2011 for the course BIOL 1130 taught by Professor Roberts during the Spring '08 term at North Texas.

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bioethics - Ethical, Legal, and Social Implications of HGP...

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