What is Genetics? : Frequent Questions & Answers

If a genetic test shows I am at risk for a disease, can I be denied health insurance?

Thanks to recently developed legislation, many fears can be reduced about the use of genetic information for insurance or employment eligibility. A new legislative act called the Genetic Information Non-Discrimination Act (GINA), aims to protect your genetic information from such misuse. The Act prohibits the use of genetic information including family health history to determine a person’s premiums or eligibility for individual plan or group health insurance. The new protections also prohibit the use of genetic information, including family health history, by employers in decisions such as hiring, firing, or promotions. Additionally, the Act makes it illegal for employers or health insurance companies to require a person or their family members to have a genetic test to determine their eligibility. Tests covered by the new legislation are predictive tests, meaning those genetic tests that determine a person’s risk of developing a specific disease, not those that diagnose a genetic disease in a person with symptoms. Often, people who get this testing are at increased risk of having a genetic change that causes the disease due to their family history or ethnicity. Examples of genetic tests covered by the Act include the following: Carrier screening for recessive conditions such as cystic fibrosis (CF); Tay-Sachs or sickle cell anemia; predictive BRCA1/2 testing or hereditary forms of colon cancer; testing of cancer tumors for management decisions; and predictive testing for adult onset diseases (Huntington disease).

The Genetic Information Non-Discrimination Act also has limitations to its protection. It does not prevent insurance or employment discrimination based on a current or diagnosed condition, even if it is genetic. For example, if a woman who has breast cancer has a genetic test that reveal she has had a genetic change that caused the breast cancer, the woman’s test result is treated as any other medical test result, and does not fall under the new special protections. Insurance companies can use the diagnosis of breast cancer in decisions about rates and eligibility. This is different than someone who has a genetic test that reveals they have a very high risk for breast cancer, but the person does not yet have breast cancer (a predictive test); the Act protects that information from being used in employment or insurance decisions. Also the new protections do not apply to life insurance, disability insurance or long-term care insurance. Members of the military are not covered by the Act, as well as employees of businesses that have less than 15 employees.

If you want to learn more about the coverage and limitations of the Genetic Information Non-Discrimination Act, please visit the Genetics & Public Policy Center.