Genetic Information Nondiscrimination Act (GINA)

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Many people don’t know of, or understand, the Genetic Information Nondiscrimination Act (GINA). While I personally have not found this to be prevalent in today’s society, but some may.

The Genetic Information Nondiscrimination Act (GINA) was signed into law in 2008 to prevent discrimination against individuals “based on their genetic information when it comes to health insurance and employment” (National Human Genome Research Institute, 2011, para 1). The laws surrounding genetics testing and employment vary significantly from state to state, with some states having very strict laws and others having very lenient laws. Going forward, all states must abide by the rules outlined in the GINA Act at a minimum.

GINA prevents health insurance companies from requesting genetic testing to determine if they can provide health care coverage to an individual. This applies both to the employee and the employee’s family members. This Act does not allow health insurance companies to deny health coverage due to genetic abnormalities or preexisting conditions and does not allow the company to use this information for a basis on rates or coverage for an individual (Department of Health and Human Services, 2009).

Genetic information, as defined in the GINA Act includes the following information:

  • “an individual’s genetic tests (including genetic tests done as part of a research study);
  • genetic tests of the individual’s family members (defined as dependents and up to and including 4th degree relatives);
  • Genetic tests of any fetus of an individual or family member who is a pregnant woman, and genetic tests of any embryo legally held by an individual or family member utilizing assisted reproductive technology; the manifestation of a disease or disorder in family members (family history); any request for, or receipt of, genetic services or participation in clinical research that includes genetic services (genetic testing, counseling, or education) by an individual or family member.

Genetic information does not include information about the sex or age of any individual” (Department of Health and Human Services, 2009, p. 2).

The specific tests included in the Act are “analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes” (Department of Health and Human Services, 2009, p. 2). However, there are certain tests that are not covered because they do not rely on the genetic analysis of the individual. These tests include: “complete blood counts, cholesterol tests, and liver function tests” (Department of Health and Human Services, 2009, p. 2).

Some ‘buts’ do exist with the GINA Act, though, where the health insurance company and / or employer are not restricted. GINA doesn’t cover or is not applicable to the following:

  • Long-term care, life, or disability insurance – non-discrimination based on genetic testing is not mandated for these types of insurance.
  • Health insurance coverage – coverage for a specific treatment or test is not covered under GINA
  • Employers with 15 employees or less are not required to adhere to GINA
  • Health insurance payments are not restricted by GINA
  • Health insurance premiums are not restricted by GINA (Department of Health and Human Services, 2009)

Have you ever had an employer ask for a genetics test? Did they give you a reason as to why they were requesting it?

Department of Health and Human Services. (2009). GINA: The Genetic Information Nondiscrimination Act of 2008. Retrieved from http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/GINAInfoDoc.pdf

National Human Genome Research. (2011). President Bush signs Genetic Information Nondiscrimination Act of 2008. Retrieved from http://www.genome.gov/24519851

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