Fear of genetic discrimination is one of the most common reasons high-risk individuals decline genetic testing. However, the evidence remains unclear as to whether genetic discrimination actually occurs. Yet this perception is enough for some individuals to forgo genetic testing and the health benefits associated with knowing one’s genetic status such as tailored preventive care.
Some of the concerns associated with genetic discrimination include the fear of being unable to obtain or losing insurance coverage, and the fear of losing a job. To help protect against the potential for insurance and employment discrimination many states have enacted genetic nondiscrimination laws. However, these laws differ from state to state, vary in comprehensiveness, and may not apply to all types of insurance plans. As of last year, 44 states addressed discrimination based on genetic information for health insurance and 17 of these states extended their prohibitions to include life, disability, and/or long-term care insurance. Also, 28 states enacted laws against use of genetic information in the workplace, and 24 states enacted genetic privacy laws.
The following sites contain listings of enacted genetic nondiscrimination laws at the state level:
National Human Genome Research Institute
Enacted insurance legislation
Enacted employment legislation
National Conference of State Legislatures
Genetic Technologies Project (if the link takes you to the NCSL homepage, click on Public User to continue)
A federal law that directly addresses the issue of insurance discrimination is the Health Insurance Portability and Accountability Act (HIPAA). However, it only applies to employer-based and commercially issued health insurance plans, and does not apply to private health insurance plans.
HIPAA prohibits group health plans from using any health status-related factor, including genetic information as a basis for
- denying coverage
- limiting eligibility for coverage, or
- charging an individual or their family members higher premiums for coverage.
HIPAA also states that genetic information in the absence of a current diagnosis of illness shall not be considered a preexisting condition.
More information on HIPAA can be found on the Health Care Financing Administration website.
