What does GINA mean?

A comment to one of my blog entries on genetic testing asked whether genetic testing would affect life insurance rates. My response pointed out the first GINA challenge to employment discrimination and referenced a personal refusal for long-term care insurance based on family history. 

Note that my answer ddidn't address the question. I've since checked further into the details and learned the following--which I should have remembered:

GINA's provisions prohibiting discrimination in health coverage based on genetic information do not extend to life insurance, disability insurance, or long-term care insurance. For example, GINA does not make it illegal for a life insurance company to discriminate based on genetic information. In addition, GINA's provisions prohibiting discrimination by employers based on genetic information generally do not apply to employers with fewer than 15 employees. For health coverage provided by a health insurer to individuals, GINA does not prohibit the health insurer from determining eligibility or premium rates for an individual based on the manifestation of a disease or disorder in that individual. For employment-based health coverage provided by group health plans, GINA permits the overall premium rate for an employer to be increased because of the manifestation of a disease or disorder of an individual enrolled in the plan, but the manifested disease or disorder of one individual cannot be used as genetic information about other group members to further increase the premium. GINA also does not prohibit health insurers or health plan administrators from obtaining and using genetic test results in making payment determinations. 

This source (http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/GINAInfoDoc.pdf) also defines "genetic information" as follows:

GINA defines genetic information as information about:

  • An individual's genetic tests (including genetic tests done as part of a research study);
  • Genetic tests of an 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 an individual's family members (family history); or
  • 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 an individual's family members.

Genetic information does not include information about the sex or age of any individual.

and defines "genetic testing" as follows:

GINA defines a genetic test as an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detect genotypes, mutations, or chromosomal changes. Routine tests that do not detect genotypes, mutations, or chromosomal changes, such as complete blood counts, cholesterol tests, and liver enzyme tests, are not considered genetic tests under GINA. Also, under GINA, genetic tests do not include analyses of proteins or metabolites that are directly related to a manifested disease, disorder, or pathological condition that could reasonably be detected by a health care professional with appropriate training and expertise in the field of medicine involved.

I posted an addition to my comment--finally answering the original question--and posted the information here for all to read. I have not yet researched in detail the effects the new health regulations have on GINA. Also, neither GINA nor the health reform act has been tested in courts.

Marie Godfrey, PhD





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