The Generative Brain

Genetic Information Nondiscrimination Act of 2008 (US)

GINA is a US federal statute, approved on 21 May 2008, with two working parts: Title I on health coverage and Title II on employment. Title I bars health plans and issuers from using genetic information for premiums, eligibility or underwriting and from requesting or requiring genetic tests, with a limited research exception. Title II bars employers with 15 or more employees and related bodies from using genetic information in employment and, with exceptions, from acquiring it. It does not cover life, disability or long-term care insurance, does not apply to the military's employment decisions, and does not stop use of a manifested disease. States may go further. Description of the text only; not legal or insurance advice.

Key facts

  • Title I bars group plans and issuers from adjusting group premiums on genetic information, from requesting or requiring a genetic test of an individual or family member, and from requesting, requiring or purchasing genetic information for underwriting or before enrolment.
  • The individual market rule adds that genetic information cannot set eligibility or premiums or be treated as a pre-existing condition; Medigap has parallel rules.
  • Section 105 makes use or disclosure of genetic information for underwriting not a permitted use under HIPAA; the current rule excludes issuers of long-term care policies.
  • Exclusion: GINA's health protections do not cover life, disability or long-term care insurance; some states do.
  • Exclusion: Title II does not apply to employers with fewer than 15 employees or to the military, and TRICARE has more limited protection.
  • Exclusion: an issuer may use a disease manifested in the individual, and an employer does not violate GINA by using non-genetic medical information about a manifested condition even if it has a genetic basis.
  • A condition counts as manifested when a qualified professional has diagnosed it or reasonably could, and not if the diagnosis rests principally on genetic information.
  • Genetic information covers a person's own tests, relatives' tests, disease in relatives, and requesting or receiving genetic services or joining research that includes them; relatives reach the fourth degree, and sex and age are excluded.
  • Genetic services are defined as tests, genetic counseling and genetic education.
  • Employers may acquire genetic information only in six listed situations, including inadvertent requests, voluntary health services with written authorization, leave certification and toxic exposure monitoring.
  • Genetic information an employer holds must sit in separate confidential medical files, with narrow disclosure rules.
  • Remedies follow Title VII, with damages limits under 42 USC 1981a; retaliation is barred, and section 208 creates no disparate impact claim.
  • GINA is a floor: it does not override stricter state law.
  • Florida's 2020 bill, as enrolled, bars life and long-term care insurers from cancelling, limiting or denying cover or varying premiums on genetic information absent a diagnosis, for policies from 1 January 2021, and excludes family history questions from the definition.
  • EEOC charges including a GINA claim numbered 238, 206, 220, 209 and 440 in FY 2016 to FY 2020.
  • The CJD Foundation's genetic counseling page lists arranging life or long-term care insurance ahead of testing as a topic for a counselor, without naming GINA.

Timeline

  1. 2008GINA approved as Public Law 110-233.
  2. 2009Title I rules start to apply one year after enactment, for plan years and policies beginning after that point.
  3. 2009Title II takes effect.
  4. 2010EEOC final rule published, effective 10 January 2011.
  5. 2020Florida HB 1189 takes effect, applying to policies from 1 January 2021.
  6. 2022NHGRI page last updated, stating the insurance exclusions.
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