Legal Protections: GINA
The Genetic Information Nondiscrimination Act (GINA) is a federal law that provides important protections for people who undergo genetic testing:
What GINA Protects
- Health insurance: GINA forbids health insurers and plan administrators from using genetic test results to make decisions about coverage or rates. Genetic testing results cannot be treated as a pre-existing condition. Insurers are also prohibited from asking individuals or family members to take a genetic test.
- Employment: GINA protects individuals from hiring, firing, or promotional decisions based on genetic information, including family history and genetic test results.
What GINA Does Not Cover
GINA does not apply to employers with fewer than 15 employees, nor to the military, Veterans Administration, Indian Health Service, or Federal Employee Health Benefits Plan (though most of these have similar protections in place).
GINA does not address disability insurance, long-term care insurance, or life insurance. This means a personal or family history of cancer (with or without genetic testing) could potentially affect life insurance rates and eligibility.
GINA does not protect people from discrimination based on having already received a cancer diagnosis. It only protects against discrimination based on genetic information alone.
Organizations & Helplines
FORCE (Facing Our Risk of Cancer Empowered)
Toll-free helpline connects you with a volunteer board-certified genetic counselor who can answer general questions about genetic testing and hereditary cancer. Also offers a Peer Navigator Program to match you with someone who has been through the process.
Phone: 866-288-RISK (7475), ext. 704
facingourrisk.org →Basser Center for BRCA at Penn Medicine
Comprehensive resource for BRCA education, research, and clinical care, including detailed information on insurance coverage, testing, and risk management for both men and women.
basser.org →National Cancer Institute (NCI)
The NCI's BRCA Fact Sheet is one of the most comprehensive government resources on BRCA mutations, cancer risks, and genetic testing.
cancer.gov/brca-fact-sheet →National Breast Cancer Foundation
Provides education on BRCA mutations, breast cancer risk, and support resources.
nationalbreastcancer.org →Susan G. Komen
Detailed information on BRCA gene mutations, inheritance, and risk management options for women and men.
komen.org →Ovarian Cancer Research Alliance (OCRA)
Provides BRCA education specific to ovarian cancer risk. Offers free genetic testing through a partnership with Color Genomics for eligible individuals.
ocrahope.org →CDC National Breast and Cervical Cancer Early Detection Program
Find free or low-cost screening programs in your state, territory, or tribe.
Phone: 1-800-232-4636
cdc.gov/screenings →B-RST (Breast Cancer Genetics Referral Screening Tool)
A free, validated online tool that can help you and your provider assess whether you should be referred for genetic counseling. One of the USPSTF-recommended risk assessment tools.
breastcancergenescreen.org →Sources Cited in This Guide
All sources were accessed and verified as of March 2026.
Government & Institutional Sources
- National Cancer Institute. BRCA Gene Changes: Cancer Risk and Genetic Testing Fact Sheet. cancer.gov
- National Cancer Institute. BRCA1 and BRCA2 (PDQ) – Health Professional Version. cancer.gov
- MedlinePlus Genetics. BRCA1 Gene. medlineplus.gov
- U.S. Preventive Services Task Force. Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA-Related Cancer (2019). uspreventiveservicestaskforce.org
- Centers for Medicare & Medicaid Services. ACA Implementation FAQs, Set 12. cms.gov
- Centers for Medicare & Medicaid Services. LCD: BRCA1 and BRCA2 Genetic Testing (L36499). cms.gov
- CDC. National Breast and Cervical Cancer Early Detection Program. cdc.gov
- Healthy People 2030 / ODPHP. BRCA-Related Cancer: Risk Assessment, Genetic Counseling, and Genetic Testing. odphp.health.gov
Medical Centers & Research Institutions
- Johns Hopkins Medicine. Inherited Cancer Risk: BRCA Mutation. hopkinsmedicine.org
- Dana-Farber Cancer Institute. About BRCA and Related Genes. dana-farber.org
- Basser Center for BRCA at Penn Medicine. Insurance & Costs. basser.org
- Basser Center for BRCA at Penn Medicine. BRCA in Men. basser.org
- Fred Hutch Cancer Center. BRCA1/2: Why Men Should Be Screened for the "Breast Cancer Gene." (2024) fredhutch.org
- StatPearls / NCBI Bookshelf. BRCA1 and BRCA2 Mutations. ncbi.nlm.nih.gov
- GeneReviews / NCBI Bookshelf. BRCA1- and BRCA2-Associated Hereditary Breast and Ovarian Cancer. ncbi.nlm.nih.gov
Peer-Reviewed Journals
- Owens DK, Davidson KW, Krist AH, et al. Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA-Related Cancer: US Preventive Services Task Force Recommendation Statement. JAMA. 2019;322(7):652-665. PubMed
- Breast Cancer Association Consortium. Cancer Risks Associated With BRCA1 and BRCA2 Pathogenic Variants. Journal of Clinical Oncology. 2022. JCO
- Cheng HH, et al. BRCA1, BRCA2 and Associated Cancer Risks and Management for Males: A Review. PMC. 2024. PMC
- Douglas MP, et al. Eligibility criteria in private and public coverage policies for BRCA genetic testing and genetic counseling. PMC. 2015. PMC
Nonprofit Organizations
- FORCE (Facing Our Risk of Cancer Empowered). Genetic Counseling & Testing Under the ACA. facingourrisk.org
- FORCE. Genetic Services Coverage Overview. brca.info
- FORCE. Financial Assistance for Genetic Testing. brca.info
- Susan G. Komen. BRCA Gene Mutations – Women. komen.org
- National Breast Cancer Foundation. What Is BRCA? nationalbreastcancer.org
- Ovarian Cancer Research Alliance. Science Made Simple: BRCA Mutations. ocrahope.org
- Breast Cancer Research Foundation. What Is BRCA1? bcrf.org
- ASCO. Genetic Testing Coverage & Reimbursement. asco.org
- MOST Policy Initiative. BRCA Gene Testing (Science Note). mostpolicyinitiative.org
Testing Laboratories
- Myriad Genetics. Financial Assistance. myriad.com
- Quest Diagnostics. Financial Assistance and Support Programs. questdiagnostics.com
- Labcorp / Invitae. Billing FAQs for Individuals and Patients. invitae.com
- JScreen. BRCA Gene Testing Costs: What to Expect. jscreen.org
Additional References
- The ObG Project. USPSTF Guidelines for Primary Care Clinicians: BRCA-Related Cancer Risk Assessment. (2019) obgproject.com
- AAFP. Risk Assessment, Genetic Counseling, and Genetic Testing for BRCA-Related Cancer: Recommendation Statement. (2020) aafp.org
- Domchek S, Robson M. Broadening Criteria for BRCA1/2 Evaluation: Placing the USPSTF Recommendation in Context. JAMA. 2019;322(7):619-621. ASCO Post
- American Cancer Society. National Breast and Cervical Cancer Early Detection Program (NBCCEDP). cancer.org
- Co-Pay Relief. Cancer Genetic and Genomic Testing Fund. copays.org