Genetic Discrimination Law

Genetic discrimination occurs when individuals are treated differently by insurers, employers, or other entities based on their genetic information. Several federal and state laws provide protections, but significant gaps remain, particularly in life, disability, and long-term care insurance. Understanding these legal frameworks is essential for counseling patients about the implications of genetic testing.

• GINA (Genetic Information Nondiscrimination Act, 2008): The primary federal law protecting against genetic discrimination. GINA has two titles:
  • Title I prohibits health insurers from using genetic information to make coverage or premium decisions. Insurers cannot require genetic testing or use genetic test results, family history, or participation in genetic research to deny or limit coverage.
  • Title II prohibits employers with 15 or more employees from using genetic information in hiring, firing, promotion, or other employment decisions. Employers cannot request, require, or purchase genetic information about employees or their family members.
  • What GINA does NOT cover: Life insurance, disability insurance, long-term care insurance, the military (TRICARE), employers with fewer than 15 employees, and individuals who already have a diagnosed condition (GINA protects genetic information, not manifested disease).
• HIPAA (Health Insurance Portability and Accountability Act): Protects the privacy of health information, including genetic test results. Requires authorization for disclosure of protected health information (PHI). Relevant to genetics because it governs how genetic test results are stored, shared, and accessed. HIPAA's nondiscrimination provisions also prohibit group health plans from using genetic information as a pre-existing condition.
• ADA (Americans with Disabilities Act): Prohibits employment discrimination based on disability. Once a genetic condition manifests as a disability (e.g., a person with symptoms of Huntington disease), the ADA provides protections that GINA does not. The ADA applies to employers with 15 or more employees.
• State-level protections: Many states have enacted genetic nondiscrimination laws that are broader than GINA. Some states (e.g., California, Florida, Vermont) extend protections to life insurance, disability insurance, or long-term care insurance. Counselors should be familiar with their state's specific protections and inform patients accordingly.
• Life, disability, and long-term care insurance gaps: This is the most significant gap in federal protection. Under GINA, companies offering life insurance, disability insurance, or long-term care insurance can use genetic test results to make underwriting decisions. This means a patient who tests positive for a BRCA1 pathogenic variant could be denied life insurance or charged higher premiums. Patients considering predictive testing should be counseled about this gap and may wish to secure these policies before testing.
• Duty to warn: The legal obligation (in some jurisdictions) to warn identifiable third parties of serious, foreseeable harm. In genetics, this arises when a patient refuses to disclose a result that could affect at-risk relatives. Key cases:
  • Tarasoff v. Regents of the University of California (1976): Established the duty to warn identifiable third parties of foreseeable harm in the mental health context. Though not a genetics case, it provides the legal framework often applied to genetics scenarios.
  • Pate v. Threlkel (1995): A Florida case involving medullary thyroid carcinoma. The court held that the physician's duty to warn was satisfied by informing the patient, who could then warn family members.
  • Safer v. Pack (1996): A New Jersey case also involving familial cancer. The court held that the duty to warn may extend beyond the patient to identifiable at-risk relatives, suggesting a broader obligation than Pate.
• Genetic testing in the workplace: Under GINA Title II, employers cannot request genetic tests. However, voluntary workplace wellness programs have been a gray area: the EEOC has issued rules limiting how much employers can incentivize participation in programs that collect genetic information.
• Military considerations: Active-duty military members and those covered by TRICARE are not fully protected by GINA. The Department of Defense has its own policies regarding genetic testing and information. Counsel military patients carefully about the implications of testing.

• A 30-year-old woman is considering predictive testing for Huntington disease. She asks whether a positive result could affect her insurance. Counsel her that GINA protects her health insurance and employment, but she could face discrimination in life, disability, and long-term care insurance. She may wish to secure these policies before testing. Check state-specific protections as well.
• An employer requires all employees to undergo "wellness screenings" that include family health history questionnaires. Under GINA Title II, the employer cannot require genetic information (including family history) as a condition of employment. The employee can decline the genetic portions of the screening.
• A genetic counselor has a patient with a confirmed MLH1 pathogenic variant who refuses to inform her two sisters. One sister is 45 and has never had a colonoscopy. The counselor faces a tension between patient confidentiality (HIPAA, autonomy) and duty to warn (beneficence, Safer v. Pack). In most U.S. states, there is no clear legal mandate to breach confidentiality, but the counselor should document the conversation and strongly encourage disclosure.
• A patient who tested positive for a BRCA2 variant applies for long-term care insurance and is denied based on her genetic test result. This is legal under federal law: GINA does not cover long-term care insurance. She may have recourse under state law if her state has broader protections.