Genetic Information Nondiscrimination Act (GINA)

The Genetic Information Nondiscrimination Act of 2008 (42 U.S.C. §§ 2000ff–2000ff-11) prohibits health insurers from using your genetic information to deny coverage or set premiums, and prohibits employers from using genetic information in hiring, firing, promotion, or any other employment decision. GINA was passed because advances in genetic testing created a fear that people would avoid beneficial testing — for hereditary cancer risk, Huntington's disease, or other conditions — if the results could be used against them. The law draws a clear line: your DNA is not a basis for discrimination. If you carry the BRCA gene mutation, your insurer can't raise your premium and your employer can't pass you over for promotion — protections enforced alongside the Americans with Disabilities Act. GINA covers approximately 155 million Americans through its health insurance and employment titles.

Current Law (2026)

Legal Authority

• 42 U.S.C. § 2000ff — Definitions (defines "genetic information" to include the individual's genetic tests, genetic tests of family members, manifestation of a disease or disorder in family members, and any request for or receipt of genetic services)
• 42 U.S.C. § 2000ff-1 — Employer practices (makes it an unlawful employment practice to fail to hire, discharge, or discriminate against any employee because of genetic information; prohibits limiting, segregating, or classifying employees based on genetic information; prohibits requesting, requiring, or purchasing genetic information except in limited circumstances)
• 42 U.S.C. § 2000ff-5 — Confidentiality of genetic information (employers who possess genetic information must maintain it in separate files, treat it as a confidential medical record, and not disclose it except to the employee, for occupational health research, in response to a court order, or to government officials investigating compliance)
• 42 U.S.C. § 2000ff-6 — Remedies and enforcement (same remedies and procedures as Title VII of the Civil Rights Act — EEOC enforcement, private right of action, compensatory and punitive damages subject to Title VII caps)
• 42 U.S.C. § 2000ff-7 — Disparate impact (GINA does not establish a cause of action for disparate impact based on genetic information — only intentional discrimination is prohibited)

How It Works

Under Title I (42 U.S.C. § 2000ff et seq.), health insurers — group health plans, individual market insurers, and Medicare supplemental policies — cannot use genetic information to deny enrollment, set premiums, impose preexisting condition exclusions, or adjust coverage terms, and cannot request or require genetic testing as a condition of enrollment. Under Title II (42 U.S.C. § 2000ff-1), employers with 15 or more employees cannot use genetic information in any employment decision — hiring, firing, promotion, compensation, or any other term or condition — and cannot request, require, or purchase genetic information about employees or applicants. "Genetic information" is defined broadly to include your own genetic test results, genetic tests of family members up to the 4th degree, the manifestation of a disease or disorder in family members, and participation in genetic services — meaning asking "does cancer run in your family?" in a job interview violates the law even without a genetic test result in hand.

Narrow exceptions to the prohibition on acquiring genetic information include inadvertent acquisition (the "water cooler exception" — an employee voluntarily mentions a family member's illness), commercially and publicly available information, genetic monitoring of biological effects of workplace toxic substances (with consent), and information requested under FMLA certification where family medical history is relevant to qualifying for leave. What GINA does not cover is significant: life insurance, disability insurance, and long-term care insurance are explicitly excluded — these insurers may still consider genetic information in underwriting, a gap consumer advocates have sought to close. GINA also does not apply to employers with fewer than 15 employees, military members, or Indian tribes. Genetic information must be kept in separate medical files and treated as a confidential medical record under 42 U.S.C. § 2000ff-5, with disclosure permitted only to the employee, for occupational health research, in response to a court order, or to government officials investigating compliance.

How It Affects You

State Variations

Implementing Regulations

• 29 CFR Part 1635 — Genetic Information Nondiscrimination Act of 2008 (GINA Title II): the EEOC's implementing regulations for the employment discrimination prohibition, which are substantively more detailed than the statute on critical compliance points:

  • § 1635.2/1635.3 — Key definitions: "genetic information" means an individual's genetic tests, genetic tests of family members, manifestation of a disease or disorder in family members, requests for or receipt of genetic services by the individual or family member, and participation in genetic research; "family member" extends to the fourth degree of relatedness (great-great-grandparents, second cousins); "genetic monitoring" means the periodic examination of employees to evaluate acquired modifications to their genetic material caused by toxic workplace exposures; the breadth of "family medical history" as genetic information is the most operationally important definition — it makes casual questions about family health history potential GINA violations
  • § 1635.4 — Prohibited employment practices: it is unlawful to discriminate against any individual in hiring, discharge, compensation, terms, conditions, or privileges of employment because of the individual's genetic information; an employer cannot make employment decisions based on an employee's BRCA positive test, family history of cancer, request for FMLA leave based on family medical conditions, or participation in cancer research — all of these involve "genetic information" under GINA
  • § 1635.8 — Acquisition of genetic information prohibited: a covered entity may not request, require, or purchase genetic information about an individual or family member, except for six narrow exceptions: (1) inadvertent acquisition (the "water cooler exception" — overhearing an employee mention a family member's illness); (2) health/genetic services offered by the employer on a voluntary basis with specific authorization; (3) FMLA/similar certification requests that reference a serious health condition (but employers must warn health care providers not to provide genetic information); (4) commercially available and publicly available documents (newspaper articles, court records) but not research participation or test results; (5) genetic monitoring of biological effects of toxic substances in the workplace; (6) DNA testing for law enforcement databases from employees holding forensic lab positions; the six exceptions are narrow — most employer wellness programs that ask family medical history questions do not qualify for an exception
  • § 1635.9 — Confidentiality: a covered entity that possesses genetic information must maintain it on separate forms and in separate medical files from other personnel records; must treat the information as a confidential medical record; must not disclose it except to: (a) the employee on their request, (b) an occupational health researcher with proper protections, (c) in response to a court order, (d) to government officials investigating GINA compliance, or (e) to a supervisor/manager regarding necessary work restrictions based on family medical leave; genetic information may not be in the main personnel file under any circumstances
  • § 1635.10 — Enforcement: GINA Title II enforcement follows Title VII procedures — charges must be filed with the EEOC within 180 days (300 in deferral states) of the discriminatory act; after EEOC investigation, right-to-sue letters issue; remedies include compensatory damages (capped at $50K-$300K based on employer size, same as ADA Title I), punitive damages (willful violations), back pay, and injunctive relief; EEOC may also pursue pattern-or-practice actions

  The EEOC has brought the majority of GINA enforcement actions against employer wellness programs — specifically, programs that offer financial incentives for completing health risk assessments (HRAs) that include family medical history questions. The EEOC's position (upheld in several circuit courts) is that when participation in the HRA is incentivized by significant cost savings (premium discounts, avoided charges), the "voluntary" label is illusory and the employer has effectively required the acquisition of genetic information. As at-home genetic testing has proliferated (23andMe, AncestryDNA), questions about whether employers can access that data — and whether employees must disclose it — have become more common; GINA's prohibition on requiring acquisition applies to third-party testing services as well as employer-ordered tests. Recent EEOC enforcement: EEOC v. Fabricut Inc. (N.D. Okla., 2013) — first GINA settlement; multiple wellness program enforcement actions 2018-2022 against employers conditioning employment benefits on genetic information disclosure.

• 45 CFR Part 160/164 — HIPAA Privacy Rule (genetic information as protected health information)

• 26 CFR Part 54 / 29 CFR Part 2590 / 45 CFR Part 146 — GINA Title I health insurance provisions (prohibiting genetic information in underwriting)

Pending Legislation

• S 3607 — Access to Genetic Counselor Services Act of 2026: let Medicare cover genetic counseling by licensed or board-certified counselors, with payment and billing rules. Status: Introduced.
• HR 6280 — Access to Genetic Counselor Services Act of 2025 (House companion): add Medicare Part B coverage for genetic counseling. Status: Introduced.

Recent Developments

The rapid growth of direct-to-consumer genetic testing (23andMe, Ancestry DNA, and clinical genomic testing) has brought GINA's protections into sharper focus for millions of Americans who now have access to their genetic data. The gap in coverage for life and disability insurance has generated increasing concern as more people obtain genetic test results that could affect their insurability outside of health coverage. EEOC enforcement of Title II has produced settlements addressing employer wellness programs that effectively required genetic information (family medical history) as a condition of participation — the EEOC has clarified that wellness programs asking about family medical history must be truly voluntary. The intersection of GINA with emerging polygenic risk scores (which predict disease risk from many genetic variants) presents new challenges for both employment and insurance discrimination.

• 23andMe bankruptcy and genetic data (2025): 23andMe — which holds genetic data on approximately 15 million customers — filed for bankruptcy in March 2025 and began a sale process. The handling of genetic data in bankruptcy proceedings raised acute GINA and privacy concerns: would a buyer (potentially a pharma company, insurer, or data broker) be subject to GINA's restrictions on use? State attorneys general from California and other states sought court orders requiring customer data deletion or limiting buyer use. The bankruptcy highlighted the gap in GINA's coverage for secondary uses of genetic data by companies other than the original testing firm.
• GINA and long-term care insurance: GINA explicitly does not cover long-term care insurance — insurers can request genetic test results and use them in underwriting LTC policies. As genomics advances and polygenic risk scores for Alzheimer's, cardiovascular disease, and cancer become commercially available, the practical value of a negative APOE4 test (for Alzheimer's risk) versus a positive one creates significant LTC underwriting pressure. Congress has periodically considered extending GINA to LTC insurance; no legislation has passed.
• AI polygenic risk scores and employment: Employers using AI-driven health screening tools that incorporate publicly available genetic information (e.g., drawing on aggregated genomic databases to estimate disease risk for workers in physically demanding jobs) may implicate GINA Title II. The EEOC has not issued guidance specifically on AI tools and GINA, though its AI hiring bias guidance (2023) touched on screening tools that may produce disparate impact on protected classes including those with genetic conditions.
• EEOC GINA enforcement under Trump administration: The EEOC under Trump's leadership has deprioritized GINA enforcement relative to the Biden EEOC, which had actively pursued wellness program cases. With the EEOC focused on DEI-related discrimination charges and Title VII sex-based cases, GINA enforcement actions have slowed. Individuals alleging genetic discrimination must still exhaust EEOC administrative remedies before filing suit, and EEOC charging period rules apply.