OCRFA believes that all people should be free from discrimination of any kind on the basis of their genetic predispositions to disease. We believe that all individuals should be able to undergo genetic testing to assess their risk of disease without fear that that information can be used against them. We strongly supported the Genetic Information Nondiscrimination Act (GINA), which was passed into law in 2008 and bans genetic discrimination in health insurance and employment. We further support stronger legislative proposals that would extend GINA’s protections to other types of insurance. These protections are critical to ensuring the full realization of personalized medicine and genomics research.
Genetic discrimination threatens an individual’s right to pursue the best medical treatment for them. Individuals may choose to forgo genetic testing if they fear they could lose their job or insurance based upon the result of that test. Some individuals may choose to pay for genetic testing out-of-pocket to avoid disclosure to their insurance company, despite its often high costs. Furthermore, the fear of genetic discrimination may cause some individuals to decline participating in clinical trials, effectively choking the pipeline to developing cures for many diseases. Examples of discrimination may include using genetic information to make decisions about hiring, firing, advancement opportunities, denying insurance coverage, changing insurance terms and paying for medical care.
Mutations in the BRCA1 and BRCA2 genes put women at a dramatically increased risk of developing breast and ovarian cancer. While only a small percentage of women inherit these genes from their family, up to one fifth of all ovarian cancers are due to a genetic mutation. Women of Ashkenazi Jewish descent are at higher risk of carrying BRCA1 orBRCA2 mutations than the general public; however, people of other ancestries also carry these mutations. People who have no known family history of ovarian cancer can also acquire these mutations, though those with a family history of the disease are at highest risk.
The Genetic Information Nondiscrimination Act (GINA), passed in 2008, prohibits genetic discrimination in employment and health insurance. GINA prohibits employers from using genetic information in hiring, firing and promotion decisions. Employers also are barred from requesting their employees submit to genetic testing. GINA bans health insurers from rejecting coverage or raising premiums for healthy individuals based on their genetic information. Notably, GINA’s protections do not extend to life, disability and long-term care insurance.
Several states have passed laws that bolster GINA’s protections in life, disability and long-term care insurance. You can find information on whether your state offers additional protections.
There are other federal laws that offer additional legal and privacy protections to patients:
- The Privacy Act of 1974 allows for some privacy protection for medical records.
- The Americans with Disabilities Act (ADA) addresses similar issues regulating medical information about disabilities by protecting both privacy and discrimination (employment, public services and public accommodations; genetic illnesses are not specifically referenced, however).
- The Health Insurance Portability and Accountability Act, passed in 1996, upholds some restrictions on the use of genetic information in setting premiums and determining eligibility for benefits in health insurance.
- The Patient Protection and Affordable Care Act, passed in 2010, states that health insurance providers cannot deny coverage or set rates based upon any pre-existing medical condition.
Kanchi et al. (2014) Integrated analysis of germline and somatic variants in ovarian cancer. Nature Communications. 5: 3156.