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
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)
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
of HIPAA provisions.
Order 13145 to Prohibit Discrimination in Federal Employment
Based on Genetic Information
Genetic Information Nondiscrimination Act (GINA)
summary of pending legislation | Full
Where can I report cases of genetic discrimination
or privacy violations?
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
and Public Policy Center
for Genetics and Society
Partnership for Women and Families