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Policy Archive
Successful Effort
Genetic Information Nondiscrimination Act (GINA)
In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed to protect individuals from genetic discrimination in health care and employment. GINA was the result of a 13-year effort spearheaded by the Coalition for Genetic Fairness (CGF). FORCE was an active member of this coalition beginning in 1999, the year FORCE was established.
Designed to prohibit the use of genetic information in health insurance and employment., GINA prohibits group health plans and insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions. Initially, the Coalition consisted of civil rights, disease-specific, and healthcare organizations, but in 2005 the CGF expanded to include industry groups and employers, uniting more than 500 organizations and thousands of individuals as one voice against genetic discrimination.
The law currently does not protect individuals from discrimination in life, disability or long-term care insurance. For more information, visit NIH's National Human Genome Research Institute.
See our Privacy & Nondiscrimination section of our website for more extensive information about GINA and other legal protections.
News Briefs
4/3/2024 - Submitted comments to Senator Cassidy and the HELP Committee in response to an RFI regarding oversight of clinical diagnostic tests, known as in vitro diagnostics (IVDs) and laboratory-developed tests (LDTs).
3/15/2024 - Joined the Coalition to Increase Access to Cancer Care (CIACC) in comments to House leadership on efforts to strengthen the Employee Retirement Income Security Act (ERISA) and emphasize the need to pass the Cancer Drug Parity Act.
3/1/2024 - Provided feedback to CMS on the Medicare Advantage Advanced Notice and accompanying Part D Redesign Program provisions aimed at reducing and managing beneficiary out-of-pocket costs in the Medicare Part D program.
2/29/2024 - Wrote sponsors to endorse the BENEFIT Act, which would require the FDA to include in the benefit-risk assessment framework of a new drug application how patient experience data was considered in the review process.
Related Resources
- Informational GINA flyer
- Genetic Information Nondiscrimination Act website provides an introduction to the GINA law and its health insurance and employment protections. It includes answers to common questions about GINA.