Genetic Testing & Insurance: Understanding HIPAA Protections

The research advances of the late 20th century made genetic testing available to assess the likelihood of expressing many specific diseases. This also made it possible for insurance companies to use this information to modify or deny health coverage to individuals. In response to consumer fears, the United States sought to regulate the use of this information.

HIPAA

• The Health Insurance Portability and Accountability Act of 1996 (HIPAA) prohibited the use of genetic information by health insurers to discriminate against applicants, but this only applied to group policies.

GINA

• The Genetic Information Nondiscrimination Act (GINA) was enacted in 2008. GINA prohibits the use of genetic information by health insurers to discriminate against applicants in group and private plans.

State Laws

• As neither GINA nor HIPAA prohibits genetic discrimination by other insurers, such as life or disability insurers, many states have enacted laws addressing these concerns. Information on state laws can be viewed on the genetics legislation database at the National Conference of State Legislatures website.