What are the legal protections?
The Genetic Information Nondiscrimination Act (GINA) is a long-awaited piece of federal legislation prohibiting the use of genetic information in health insurance coverage decisions or employment. This legislation prohibits insurance companies from determining health insurance eligibility or premiums based on genetic test results or family history. In addition, GINA prohibits employers from using genetic information in decisions regarding employment, compensation, conditions or privileges of employment. For more information, see Hudson et al. New England Journal of Medicine 358: 2661-63, 2008.
In August 1996, HIPAA was signed into law, expressly stating that people who are covered by a group health insurance policy of 50 or more individuals by their employer may not be denied a similar policy due to genetic information or other pre-existing conditions when they change jobs. This law was a first step in providing federal protection against genetic status discrimination. However, it does not protect self-employed individuals or those working for small employers, so the more comprehensive GINA was later passed.
At the state level, California law prohibits prepaid health care plans, self-funded/self-insured employer/employee welfare benefit plans, nonprofit hospital service plans, and life and disability income insurance companies from discrimination based on genetic characteristics to persons unaffected by a genetic-related disorder. Genetic characteristics are defined as a family history of genetic disorders or gene alterations causing or increasing the risk of a disease or disorder.