Genetic Information Nondiscrimination Act (GINA)
In May 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law. GINA protects individuals from the misuse of genetic information in health insurance and employment. GINA amends HIPAA to clarify that genetic information is health information. All aspects of the law wer in effect as of November 2009.
- GINA protects individuals from the misuse of genetic information in health insurance and employment.
- GINA was created to remove barriers to the appropriate use of 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, and research suggests that the law’s protections might ease concerns some patients have when considering genetic testing.
Protection GINA Provides
Under GINA group and individual health insurers cannot:
- use a person’s genetic information to set eligibility requirements or establish premium or contribution amounts
- request or require that a person undergo a genetic test
Under GINA employers cannot:
- use a person’s genetic information in decisions about hiring, firing, job assignments, pay or promotions
- require disclosure of genetic information about an employee or family member
Types of Genetic Information Protected by GINA
- family medical history
- carrier testing: e.g., cystic fibrosis, sickle cell anemia, spinal muscular atrophy, fragile X and other conditions
- prenatal genetic testing: e.g., non-invasive prenatal testing, amniocentesis, chorionic villus sampling (visit the case study on GINA and prenatal issues)
- susceptibility and predictive testing: e.g., testing for risk of Huntington disease, or hereditary cancer
- analysis of tumors or other assessments of genes, mutations, or chromosomal changes
NOTE: Information about sex, age, or common blood tests such as CBC or cholesterol testing is not covered.
GINA does not provide protections against or apply to:
- a condition that is already diagnosed and manifest, even if that condition is genetic (visit the case study on GINA, manifest disease, and predisposition)
- life, disability, or long-term-care insurers (as of the date listed on this document).
- requests for genetic information from employers' voluntary wellness programs
- infomation about current health status
- employers with fewer than 15 employees
- certain groups of individuals
Member Groups Exempt from GINA
GINA does NOT apply to:
- members of the United States military
- veterans obtaining health care through the Veteran’s Administration
- individuals using the Indian Health Service
- federal employees enrolled in the Federal Employees Health Benefits program (FEHB)
These groups and programs are not covered because the laws GINA amended do not apply to them. However, the military and veterans’ health-care systems have their own policies in place that provide protections similar to those in GINA. Federal employees are likewise protected by Executive Order 13145 (2000). The National Human Genome Research Institute provides additional information about the policies pertaining to these groups.
NOTE: Insurers may still base decisions on the current health status of the patient. A positive genetic test result, in the absence of other signs and symptoms, does not constitute a diagnosed condition under GINA.
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. It protects patients from having that information misused. (visit the case study on GINA and Family History).
Except in limited circumstances (see the note under genetic testing), health insurers and employers cannot request genetic information (including family history) from patients or from providers when obtaining medical records.
GINA does not directly require health professionals to delete genetic information when providing medical records.
GINA does not compel healthcare providers to order genetic tests they would not have ordered otherwise. 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)
NOTE: 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.
Developed under a grant from The Pew Charitable Trusts. Copyright 2010 by Genetic Alliance, Johns Hopkins University, and the National Coalition for Health Professional Education in Genetics. The Jackson Laboratory is providing access to, maintaining, and updating the information as needed. Permission is granted under the copyright for educational, non-commercial use of these materials. All other uses require permission of the copyright holders.
Updated September 2023