The Genetic Information Nondiscrimination Act of 2008 (GINA) provides broad protections in employment and health coverage against the improper collection, use or disclosure of individuals’ genetic information. Compliance with GINA provisions is required of health plans and employers who have 15 or more employees, employment agencies, labor organizations and joint labor-management committees.

GINA prohibits employers and health plans from improperly collecting, using and disclosing individuals’ genetic information, and makes it illegal to discriminate based on genetics.

Genetic information

GINA defines genetic information to mean information about:

  • The genetic tests of an individual or the individual’s family members;
  • The manifestation of a disease or disorder in an individual’s family members (family medical history);
  • An individual’s request for, or receipt of, genetic services, or the participation in clinical research involving genetic services by the individual or a family member; or
  • The genetic information of a fetus carried by an individual or a family member or legally held by an individual or family member using an assisted reproductive technology.

Genetic information does not include information about the sex or age of the individual or any family members. It also does not include information about the race or ethnicity of the individual or family members that is not derived from a genetic test.

Health plan compliance

GINA prohibits group health plans and insurance issuers from:

  • Adjusting group premium or contribution amounts based on genetic information;
  • Requesting or requiring individuals (or their family members) to undergo a genetic test (with limited exceptions such as for determinations regarding payment based on medical appropriateness); and
  • Requesting, requiring or purchasing genetic information prior to or in connection with enrollment, or at any time for underwriting purposes.

For purposes of HIPAA, genetic information must be treated as health information.

Employer compliance

Title II of GINA generally prohibits employment discrimination on the basis of genetic information. Employers, employment agencies, labor organization and joint labor-management committees are also prohibited from requesting, requiring or purchasing genetic information about an individual or family member.

Genetic information about an individual must be maintained separately and treated as a confidential medical record. Genetic information about an individual may be disclosed to the individual, to an occupational or other health researcher, in response to a court order, to government officials investigating compliance, for FMLA leave purposes, or to a public health agency regarding a contagious disease presenting an imminent hazard only when certain specifically outlined conditions are met.

Learn more

Both the Department of Labor (DOL) and Equal Employment Opportunity Commission (EEOC) have frequently asked questions about GINA at www.dol.gov/ebsa/faqs/faq-GINA.html andwww.eeoc.gov/laws/regulations/gina_qanda_smallbus.cfm.