May 21, 2018, marked the 10th anniversary of the Genetic Information Nondiscrimination Act (GINA) being signed into law. Its passage marked the end of a 13-year campaign by lawmakers; patients; and science advocacy groups, including ASHG; to establish fundamental protections across the U.S. against genetic discrimination.
First introduced in Congress in 1995, in the early days of the Human Genome Project, the legislation's champions were visionary in foreseeing a future where genome sequencing in research labs and the clinic would be commonplace. At the time of its passage, then-director of the National Human Genome Research Institute (NHGRI) Francis Collins, MD, PhD, praised its value for science and medicine, saying, "This is a great gift to all Americans. It will make it safe for Americans to benefit from the medical results of the Human Genome Project, in which they invested so much. It will make it safe to have their genes examined without fear that they may be discriminated against in employment or health insurance."
GINA stands for the Genetic Information Nondiscrimination Act. Enacted in 2008, GINA is a federal law that protects against genetic discrimination in the workplace and through one’s health insurance. It also safeguards individual and family privacy of genetic information. With new advances in science, technology, and data management, GINA plays a vital role in establishing a baseline of protection for all Americans against discrimination.
Join ASHG in spreading the word about GINA and its importance for research. Since GINA’s passage, studies have demonstrated there is a lack of awareness of its protections among the public and health care professionals. Increasing awareness will strengthen its effectiveness. With your help, we can make sure people know their genetic rights.
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GINA mandates workplace and health insurance protections. It means anyone may obtain their genetic information and make important lifestyle and medical decisions without fear of genetic information discrimination at work or through their health insurance.
GINA prevents employers from making job-related decisions, such as hiring and firing, based on genetic health information. In addition, it prohibits health insurers from determining the eligibility, cost, coverage, or benefits of a health insurance policy based on an individual's genetic information. Genetic Information is outlined by GINA as information about an individual’s and/or family member’s genetic tests and family medical history.
There are a few notable limitations to GINA’s protections. With respect to insurance, GINA’s protections are limited to health insurance: it does not cover life, disability, or long-term care insurance. Also, there is a small business exemption for employers with fewer than 15 employees. The law also does not apply to individuals receiving their insurance through the federal government or the military. In addition to GINA, there are other laws and policies that offer additional protections against genetic discrimination.
GINA protects the privacy of and guards against the misuse of genetic information obtained through research. The law reassures research participants that they can volunteer for studies without it harming their job or health insurance. Both NHGRI and the Office of Human Research Protections (OHRP) offer resources for researchers and Institutional Review Boards regarding the law and information to convey to research participants.
If you are concerned that you or your family member’s genetic health information rights have been violated, you can take action. For questions about genetic discrimination in the workplace, contact the Equal Employment Opportunity Commission. For issues with health insurance, start with your state health insurance commissioner.
ASHG supports international policies to protect and safeguard the genetic information of patients and research participants outside the U.S. The Society seeks to promote the importance of genetic information protections and nondiscrimination. ASHG supports the Genetic Non-discrimination Act, S-201, enacted in Canada in 2017.