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. Context Issues Ethical Legal Social Actions  Regulatory  Legal  Social

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

7. Confidentiality Right to prevent redisclosure of information developed in a confidential relationship AB C

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

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

10. Genetics is a Family Affair Obligations TO relatives Obligations OF relatives

11. Potential of GENETIC TESTING Only as beneficial as the process AND 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).