The Ovarian Cancer National Alliance is against any form of genetic discrimination specific to genetic cancer risk of ovarian and any related discrimination. The Ovarian Cancer National Alliance believes that individuals should have full access to scientific discoveries and treatment without fear of facing discrimination. The Ovarian Cancer National Alliance highly supports the Genetic Information Nondiscrimination Act (GINA) as well as stronger legislative proposals to discourage and criminalize genetic discrimination. The Ovarian Cancer National Alliance greatly supports education and enforcement of the Genetic Information Nondiscrimination Act. In order to utilize genetic research and medical advancements to the fullest, individuals, their families and society must be free of fear of genetic discrimination.
Genetic discrimination threatens both individuals and the practice of medicine. Fear of genetic discrimination, has a chilling effect on open and honest communication with one’s doctor in light of potential insurance and employment issues. Further, genetic discrimination raises privacy issues related to ownership of the information. Inhibition to genetic testing primarily stems from fear of genetic discrimination and who may access genetic information. People often pay for genetic tests out-of-pocket, rather than claim the test to the insurance company, to avoid disclosure even though genetic testing is expensive. Advancement of genetic research is critical to understanding, preventing and treating genetic disease. Examples of discrimination may include decisions about hiring, firing, advancement opportunities, denying insurance coverage, changing insurance terms, and paying for medical care.
Genetic Risk and Ovarian Cancer
A small proportion of genetic makeup accounts for differences, yet expression of the difference present health illnesses. The most significant risk factor is an inherited genetic mutation in the BRCA1 or BRCA2 genes. These genes are responsible for about 5 percent to 10 percent of all ovarian cancers. Women of Ashkenazi Jewish descent are at higher risk of carrying BRCA1 or BRCA2 mutations; however, the risk of having the mutations is not exclusive to this group of women. Ovarian cancer can occur in more than one family member independent of a known inherited gene mutation. Women who have one first-degree relative (such as their mother) with ovarian cancer but no known genetic mutation are still at an increased risk of developing the disease. Their lifetime risk is 5 percent verses the 1.39 percent rate of risk of women in the general public.
Legislation protecting privacy
Even before enactment of GINA, there were some legal protections related to genetic information:
- The Privacy Act of 1974 allows for some privacy protection for medical records.
- The Freedom of Information Act (FOIA) establishes a right of access to records maintained by agencies within the executive branch of the federal government.
- The Americans with Disabilities Act (ADA) addresses similar issues regulating medical information about disabilities by protecting both privacy and discrimination (employment, public services, public accommodations, however, genetic illnesses are not specifically referenced).
- The Health Insurance Portability and Accountability Act (HIPAA), passed in 1996, upholds some restrictions on use of genetic information on setting premiums and determining eligibility for benefits in health insurance.
- President Clinton’s Executive Order, established in 2000, prohibits genetic discrimination against employees in federal executive departments and agencies. Exceptions exist, including one may request certain information if the condition could prevent person from performing job effectively.
- Genetic Information Non Discrimination Act, passed in 2008, prohibits employment or insurance discrimination based on genetic information. GINA bars health insurers from rejecting coverage or raising premiums for health healthy individuals as a nationwide level of protection. Its function is to protect Americans against discrimination based on their genetic information relating to health insurance and employment. It limits the insurer’s ability to use genetic information to raise rates for an entire group and extends protection to individual health insurance plans. GINA does not include disability, life or long term care insurance. GINA will help encourage individuals to obtain genetic testing as medical care without the fear of discrimination on the basis of test results. With enforcement of GINA, clinical research and health care delivery may expect positive effects.
- States have enacted statutes dealing with use of genetic information. For more information on state legislation see http://www.ovariancancer.org/report-card.
Over the years, many important steps have been taken to ensure people’s rights against discrimination. Under GINA, individuals may utilize the advancements in genetic research and medical progress with assurance of not being a victim of discrimination. Genetic testing may not be recommend to all patients.