Genetic discrimination is considered the differential and adverse treatment of asymptomatic individuals based solely on their or their family members’ actual or presumed genetic characteristics. As genetic tests become more readily available, the potential grows for discrimination against people based on their genetic information. Genetic discrimination and the fear of it can have negative effects on the delivery of clinical care. The Genetic Information Nondiscrimination Act (GINA), passed in 2008, protects individuals from genetic discrimination by health insurers and employers.
Title I of GINA prohibits group and individual health insurers from using a person’s genetic information in determining eligibility or premiums and prohibits health insurers from requesting or requiring that a person undergo a genetic test in order to collect genetic information on that person for underwriting decisions. Title II of GINA prohibits employers from using a person’s genetic information in making employment decisions such as hiring, firing, job assignments, or any other terms of employment; and prohibits employers from requesting, requiring, or purchasing genetic information about a person or their family members.
The AMA's Council on Science and Public Health recently examined genetic discrimination and GINA and identified gaps in
protection and necessary steps toward strengthening protections. In addition, the AMA has developed a policy perspective on GINA, genetic discrimination, and needed improvements in laws protecting individuals from discrimination.
There have been a number of documented cases of people or their relatives who have lost jobs or insurance coverage based on reported genetic "abnormalities." Since the enactment of GINA’s health insurance and employment provisions, only a modest number of genetic discrimination complaints have been filed under its provisions; in 2013, 333 cases of genetic discrimination were filed out of nearly 95,000 total discrimination cases filed. It is possible that the small number of cases reflects the effectiveness of GINA at discouraging the practice of genetic discrimination in the health insurance and employment sectors, or alternatively, discrimination continues to occur but is unrecognized or unreported, possibly because awareness of GINA is low.
Besides GINA, other protections against genetic discrimination are:
- Federal legislation
The first federal law to address issues relating to genetic discrimination was the Health Insurance Portability and Accountability Act (HIPAA) of 1996. The Americans with Disabilities Act (ADA) prohibits employment discrimination based on a disability, the history of a disability, or a perceived disability. However, it is not clear whether the ADA protects against genetic discrimination in employment decisions.
- State legislation
Slightly fewer than half of U.S. states have laws providing additional protection against discrimination in aspects of life, long-term care, and disability insurance, as well as in other areas, that are not present in GINA. The NHGRI website provides a database of current state legislation relating to health insurance and employment discrimination as well as summaries and links to foreign laws and reports on issues of genetics.
- Executive order
In February 2000, President Clinton banned genetic discrimination when he issued Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information. The Executive Order prohibits discrimination against any federal employee based on protected genetic information, or information about a request for or the receipt of genetic services. Similarly, internal policies of the U.S. military and the Veteran's Health Administration afford protections for these groups similar to those afforded by GINA.