Settings
Save and close
Updated November 2024
The Genetic Information Nondiscrimination Act (GINA) protects individuals by prohibiting companies from using genetic and family history information that would impact health insurance (Title I) and employment (Title II). GINA was created to remove the barriers to accessing genetic services by the public.
This overview provides information about the law.
GINA does not change, and should not impede, medical practice. It affects health insurers and employers. Research suggests that the law’s protections might ease concerns some patients have when considering genetic testing.
1 Insurers may still base decisions on the current health status of the patient, regardless of genetic test results.
2 GINA only allows employers to access aggregate genetic information, and this information may not be used for employment or health insurance coverage decisions.
Other legistlation provides additional protections, as noted below.
HIPAA protects personal health information more generally, and specifically includes genetic information as protected. Both GINA and HIPAA prevent health plans from using genetic information for underwriting purposes.
The ACA protects consumers from coverage or rate setting due to pre-existing conditions. GINA does not address pre-existing conditions directly. However, because GINA specifically prohibits insurers from using family health history or genetic information, genetic information alone cannot be considered a pre-existing condition.
The health insurance protections of GINA extend to private health insurers, Medicare, Medicaid, Federal Employees Health Benefits, the Veterans Health Administration, and the Indian Health Service.
Tricare, the health insurance for members of the military, is subject to GINA. However, because the military is allowed to use genetic information in employment decision-making, this may indirectly affect access to Tricare coverage.
The National Human Genome Research Institute provides additional information about the policies pertaining to military, veteran, Federal employee and Indian Health services.
Some states have laws protecting genetic information in coverage decisions for life insurance, disability or long-term care insurance.
GINA regulates health insurers and employers, not healthcare professionals. The law does not require that health-care professionals counsel patients about GINA. Doing so, however, might help your patients feel more comfortable about providing family history information, taking a genetic test, or participating in genetic research.
The law should not keep you from taking a comprehensive family history (visit the case study on GINA and Family History). Genetic and family history information may be safely shared as part of medical records, as these protections are in place.
GINA does not require health insurance to cover the cost of genetic testing or follow-up care (visit the case study on GINA and Genetic Testing).
Insurers may still insist on proof of medical necessity for a test or for treatment. In some circumstances, the medical necessity justification may include conveying family history or other genetic information. For example, a health insurer may request family history information to assess the necessity of genetic testing for hereditary cancer. Insurers may not, however, request family history information or use the information they have for coverage decisions or setting premiums.
Editor's Note
Developed under a grant from The Pew Charitable Trusts.
GINA Case Studies Provides context to explore the implications of GINA.
GINA: Talking with Patients Provides suggested language for discussions about GINA and other protections for patients considering genetic testing.
HIPAA Final Rule (2013) Detailed primary source for the modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act.
