Genetic counseling and genetic testing can provide useful information for families who have or may be at risk for a genetic condition. However, some families may have concerns that genetic information will be used by insurance companies or employers to deny insurance coverage or employment or to raise insurance premiums.

When people are treated differently by their insurance company or employer because of genetic test results or genetic information, this is referred to as “genetic discrimination.”

What protections are in place to prevent genetic discrimination?

The Genetic Information Non-Discrimination Act of 2008 (GINA), in combination with the protections already in place as part of the Health Insurance Portability and Accountability Act (HIPAA), protects against discrimination in health coverage and employment based on genetic information. This means that health insurance companies and employers cannot ask for genetic information about individuals or use that information to make decisions about insurance coverage or terms of employment.

It is important to note that some people may have health insurance plans or work for specific employers that are not covered by GINA. Usually, these health insurance plans or employers have their own alternative protections in place regarding access to and use of genetic information. The resources listed below provide more information about which health insurers and employers are covered by GINA.

It is also important to note that GINA’s protections do not apply to life insurance, disability insurance and long-term care insurance. Therefore, these companies may ask about and use genetic information to make decisions about coverage.

While GINA protects against discrimination based on genetic information, it does not prohibit health insurers or employers from making decisions based on the manifestation of a specific disease or medical disorder in an individual.