Can the results of a genetic test be used to deny insurance coverage?

Although most states (47) have laws in place prohibiting the use of genetic information in denying health insurance coverage, these laws do not generally apply to self-insured people or to companies with fewer than 50 employees. On the other side of the picture—insurance coverage of genetic testing—state laws focus primarily on state-mandated testing of newborns. According to Alissa Johnson of the National Conference of State Legislatures, “no state requires health insurance coverage of genetic testing for adult onset disorders, such as breast cancer, which may cost more than a thousand dollars.”

She suggests that legislators investigate the benefits of genetic screening and the potential benefit to individuals or families being tested. Addressing the inequalities in ability to pay for genetic testing, she states that “affordable access to these services may still be in the distant future.”

Aetna Chairman and CEO John W. Rowe, M.D., in a speech several years ago, recommended that the health insurance industry support legislation and consider adopting guidelines for access to genetic counseling and genetic testing. He suggested the following approaches:  

• Cover genetic testing in individuals shown to be at risk where results may affect the course of treatment of the insured.
• Cover genetic testing for a family member where the family member is not otherwise insured, and results may affect the course of treatment of an at-risk insured.
• Cover consultation with qualified counselors and physicians, and facilitate the appropriate interpretation of genetic testing results.
• Support physician education in the appropriate interpretation and use of genetic tests, including guidance in selection of medication (pharmacogenetics).

Sources: http://www.ncsl.org/programs/health/genetics/geneticshins2004.htm and http://www.aetna.com/news/2002/pr_20020617.htm

Marie Godfrey, PhD