Frequently Asked Questions

What are the risks for insurance and employment discrimination related to genetic testing?

If a genetic alteration is found that increases the risk for developing cancer, it could affect the status of a person's health, life, and disability insurance. The person may be unable to qualify for new insurance, premium payments may increase, or the amount of coverage may decrease. Some insurance companies view the individual as a potential cancer patient whose medical treatment would be costly to the company.

The Americans with Disabilities Act (ADA) offers some protection against discrimination by employers. The Equal Employment Opportunity Commission (EEOC) expanded the definition of "disabled" to include those who carry altered genes that put them at higher risk for genetic diseases.

Insurance companies and employers may ask for genetic test results. If the individual does not provide truthful information, it is considered fraud and may result in loss of coverage or employment. Efforts are being made to prevent such discrimination. The degree of protection can differ from state to state so it is important to remember that decisions made while living in one state may have a negative effect after moving to another state.

NCI, Genetic Testing for Breast Cancer Risk: It's Your Choice, 1997.