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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

Human Genetics:Ethical, Legal and Social Issues

The American Society of Human Genetics

Dr. Joann Boughman, PhD, Executive VP

genetics
Genetics
  • Important to everyone
  • All consumers/patients
      • Your family history story
      • Your medical history
  • Scientists and consumers alike
characteristics of genetic data
Characteristics of Genetic Data

Genetic information is:

  • Personal
  • Permanent
  • Predictive
  • Prejudicial
  • Pedigree-sensitive
uses of genetic tests
Uses of Genetic Tests
  • Diagnostic (adjunctive, prognostic, treatment)
  • Predictive(prognostic, intervention, planning)
  • Screening(newborn, selected population, carrier)
  • Pharmacogenetic (individualized medicine)
context
Issues

Ethical

Legal

Social

Actions

Regulatory

Legal

Social

Context
privacy
Privacy

Right to prevent information from disclosure

Condition of limited access to a person

A

B

confidentiality
Confidentiality
  • Right to prevent redisclosure of information

developed in a confidential relationship

A

B

C

issues
Issues:
  • Predictive testing
  • Probabilistic answers
  • Privacy & Confidentiality
  • Informed consent
  • Equitable access
  • Discrimination
long term effects
Insurance

Employment

Disability

Medical care

Lifestyle

Family/children

Insurance

Obligations to employees

Responsibilities of others

Long-Term Effects
genetics is a family affair
Genetics is a Family Affair
  • Obligations TO relatives
  • Obligations OFrelatives
potential of genetic testing
Potential of GENETIC TESTING
  • Only as beneficial as the processAND the application of the information obtained.
the success of genetic medicine depends on
The Success of Genetic Medicine Depends on…
  • Accurate transmission of complex and predictive information given to individuals (and appropriate others).
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