Resources on Genetic Privacy and Discrimination

What is genetic discrimination?

“Genetic discrimination is defined as discrimination against an individual or against members of that individual's family solely because of real or perceived differences from the "normal" genome of that individual. Genetic discrimination is distinguished from discrimination based on disabilities caused by altered genes by excluding, from the former category, those instances of discrimination against an individual who at the time of the discriminatory act was affected by the genetic disease.”

Billings, Paul R. et al. “Discrimination as a Consequence of Genetic Testing,” American Journal of Human Genetics 50 (1992), p. 476-482.

Does existing federal law protect against genetic discrimination?

Three federal laws described below may, to a limited extent, restrict discrimination in employment and health insurance on the basis of genetic information. As the resources below make clear, however, the scope of these protections is widely debated:

Americans with Disabilities Act (ADA)

• Workrights Institute Summary, Genetic Discrimination and the ADA: An Unlikely Fit
• The U.S. Equal Employment Opportunity Commission (EEOC) Compliance Manual argues that discrimination on the basis of genetic risk factors falls under the “regarded as disabled” prong of the ADA

The Health Insurance Portability and Accountability Act (HIPAA) prohibits group health plans from denying coverage to individuals on the basis of genetic predispositions towards disease.

• U.S. National Human Genome Research Institute (NHGRI) Summary of HIPAA provisions.

Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information

Genetic Information Nondiscrimination Act (GINA)

NHGRI summary of pending legislation | Full text

Where can I report cases of genetic discrimination or privacy violations?

File a health information privacy complaint with the Office of Civil Rights of the Department of Health and Human Services
Notify the Council for Responsible Genetics

Resources on Genetics and the Law

Genetics and Public Policy Center
National Workrights Institute
Center for Genetics and Society
National Partnership for Women and Families

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