Many Americans fear that participating in research or undergoing genetic testing will lead to being discriminated against based on their genetics. Such fears may dissuade patients from taking genomics-based clinical tests or volunteering to participate in the research necessary for the development of new tests, therapies, and cures.
To address this, in 2008 the Genetic Information Nondiscrimination Act (GINA) was passed into law, prohibiting discrimination by employers and health insurers. There are also other legal protections against genetic discrimination by employers, health insurers, and others.
Canadian lawmakers passed the Genetic Non-Discrimination Act on March 8, 2017. This law would make it illegal for employers or insurance companies in Canada to discriminate against people based on their genetic information.
On August 22nd, 2017, the United States District Court of the District of Columbia ruled that the Equal Employment Opportunity Commission (EEOC), the body that implements GINA, reconsider the rule that states it is permissible for employer-sponsored wellness programs to offer inducements in exchange for employees' health information. The cap for these inducements is 30 percent of the cost of health insurance for a single person (see "GINA and Employee Wellness" page).
This 30 percent cap was supposed to maintain the voluntary nature of workplace wellness programs, as these programs are only allowed to gather employees' health information if participation in the wellness program is voluntary. In AARP v. EEOC, the American Association for Retired Persons challenged EEOC's rule allowing the 30 percent inducement, arguing the cap is in no way voluntary as it is high and, therefore, coercive. The court decision stated that EEOC had not adequately explained why it concluded that the 30 percent cap was reasonable to maintain the voluntariness of wellness programs. The judge did not immediately call for EEOC to strike the rule, but has asked that the agency reconsider the rule and develop a reasoned explanation for the connection between voluntariness and the 30 percent cap. You can read the court opinion here.
The Genetic Information Nondiscrimination Act (GINA) of 2008 protects Americans from discrimination based on their genetic information in both health insurance (Title I) and employment (Title II). Read more
Genetic Discrimination and Other Laws includes the Health Insurance Portability and Accountability Act, The Affordable Care Act, the Americans with Disabilities Act and other resources
In 1995, Congresswoman Louise Slaughter (D-NY) and Senator Olympia Snowe (R-ME) introduced the first federal legislation limiting genetic discrimination, The Genetic Information Nondiscrimination Act in Health Insurance of 1995.
Last Updated: August 29, 2017