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Name________________ GENETICS: Intervention, Control and Research The HUMAN Genome Project: mapping, identifying and sequencing all human genes Expand Knowledge and Use the knowledge for therapy Social Context: Genetic Testing and Screening Knowledge is incomplete, indications of susceptibility Possibility for Discrimination: Employment, insurance, social avoidance/stigma Social Issues Screening children for defects, for risks, for liabilities Who decides? Who informs? Case Presentations: Gene Therapy: ADA, Parkinson's, Sickle-Cell, Malignant Melanoma, Leukemia, Cystic Fibrosis , etc... Germ-Line Therapy: to eliminate heritable diseases from a family Human Stem Cells: for repair or replacement. Grow tissues, organs, nerves Huntington's Disease: Testing? Moral and social issues Genetic Intervention: gene defects, developmental defects, genetic carriers, genetic predisposition Screening: pku, Sickle-Cell Counseling Prenatal Genetic Diagnosis: amniocentesis, chorionic villus sample CVS, selective abortion DIFFICULTIES 1. Is there a right to have children who are likely to be impaired/ 2. Is society justified in requiring that people submit to genetic screening, counseling and prenatal diagnosis? 3. Do physicians have an obligation to inform their patients who are prospective parents about the kinds of genetic tests that are available? 4. Do patients have the right to be informed of all the results of a genetic test? 5. Should public funds be used to pay for genetic tests when an individual is unable to pay? Eugenics: negative- to avoid undesirable traits or conditions positive - to promote traits and conditions that are valued DIFFICULTIES Genetic Research Therapy: recombinant DNA, germ-line therapy Technology Bio Hazards DIFFICULTIES risks of new forms of life ETHICAL TRADITIONS: Utilitarian ; concern for consequences Kantian: autonomy, honesty Ross: prima facie duties Rawlsian: maxi min principles Natural Law: promote life ARTICLES: Ruth Hubbard and R. C. Lewontin: PITFALLS of GENETIC TESTING Test for conditions: treatable, non treatable, unpreventable Robert Wachbroit: DISOWNING KNOWLEDGE: Issue in Genetic Testing Against Paternalism: Do Physicians have a duty or a right to inform people of the test results? Do people have a responsibility to learn of their condition? Dena Davis: GENETIC DILEMMAS the Child's Right to an Open Future Must counselors assist couple to have a defective child? Laura Purdy: GENETICS and REPRODUCTIVE RISK: Can Having Children be Immoral? 1. there exists a duty to provide all children with a normal opportunity for a good life. 2. we don't harm possible children by not letting them exist 3. the duty to provide for (1) takes precedence over parent's right to reproduce Therefore, use prenatal screening and abortion or do not conceive Leon Kass: IMPLICATIONS of PRENATAL DIAGNOSIS for the Human Right to Life What criteria for abortion? What is "unfit" to live? Ronald Munson and Lawrence Davis: Germ-Lime Therapy and the MEDICAL IMPERATIVE There exists the imperative to promote health and so there is an obligation to pursue such therapy DECISION SCENARIOS: 1. Testing for BRCA1 2.Inform or Not? Alzheimer's Risk 3. Prenatal Diagnosis to Avoid a Dwarf being born 4. Genetic Screening for "Compatibility" 5. Prenatal screening: Result Tay-Sachs 6.Positive Eugenics Laws, incentives 7. Gene Splicing to eliminate blindness 8. Employment related Genetic Screening