Human Genetics:Ethical, Legal and Social Issues

The American Society of Human GeneticsDr. Joann Boughman, PhD, Executive VP

Genetics

Important to everyone

All consumers/patients Your family history story Your medical history

Scientists and consumers alike

Characteristics of Genetic Data

Genetic information is:

Personal Permanent Predictive Prejudicial Pedigree-sensitive

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

RegulatoryLegalSocial

Privacy

Right to prevent information from disclosure

Condition of limited access to a person

A B

Confidentiality

Right to prevent redisclosure of information

developed in a confidential relationship

A B

C

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

Genetics is a Family Affair

Obligations TO relatives

Obligations OF relatives

Potential of GENETIC TESTING

Only as beneficial as the process AND the application of the information obtained.

The Success of Genetic Medicine Depends on…

Accurate transmission of complex and predictive information given to individuals (and appropriate others).