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Human Genetics: Ethical, Legal and Social Issues

Human Genetics: Ethical, Legal and Social Issues. The American Society of Human Genetics Dr. Joann Boughman, PhD, Executive VP. Genetics. Important to everyone All consumers/patients Your family history story Your medical history Scientists and consumers alike.

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Human Genetics: Ethical, Legal and Social Issues

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  1. Human Genetics:Ethical, Legal and Social Issues The American Society of Human Genetics Dr. Joann Boughman, PhD, Executive VP

  2. Genetics • Important to everyone • All consumers/patients • Your family history story • Your medical history • Scientists and consumers alike

  3. Characteristics of Genetic Data Genetic information is: • Personal • Permanent • Predictive • Prejudicial • Pedigree-sensitive

  4. Uses of Genetic Tests • Diagnostic (adjunctive, prognostic, treatment) • Predictive(prognostic, intervention, planning) • Screening(newborn, selected population, carrier) • Pharmacogenetic (individualized medicine)

  5. Issues Ethical Legal Social Actions Regulatory Legal Social Context

  6. Privacy Right to prevent information from disclosure Condition of limited access to a person A B

  7. Confidentiality • Right to prevent redisclosure of information developed in a confidential relationship A B C

  8. Issues: • Predictive testing • Probabilistic answers • Privacy & Confidentiality • Informed consent • Equitable access • Discrimination

  9. Insurance Employment Disability Medical care Lifestyle Family/children Insurance Obligations to employees Responsibilities of others Long-Term Effects

  10. Genetics is a Family Affair • Obligations TO relatives • Obligations OFrelatives

  11. Potential of GENETIC TESTING • Only as beneficial as the processAND the application of the information obtained.

  12. The Success of Genetic Medicine Depends on… • Accurate transmission of complex and predictive information given to individuals (and appropriate others).

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