The New Genetic Information Non-Discrimination Act.

AuthorGreaves, Mac B.

This article originally appeared in the August 2008 IADC Appellate Practice Committee Newsletter.

The recently enacted Genetic Information Nondiscrimination Act ("GINA") was drafted to prohibit the improper use of genetic information by both health insurers and employers. (1) In summary, the Act prohibits employers from using genetic information to make decisions regarding hiring, firing, job placement, and promotions. GINA was an uncharacteristically proactive move by Congress to prohibit future discrimination as advances in genetics open major new opportunities for medical progress that "will allow for earlier detection of illnesses, often before symptoms have begun." (2) Because "these advances give rise to the potential misuse of genetic information to discriminate in ... employment," Congress determined that it has "a compelling public interest in relieving the fear of discrimination and prohibiting its actual practice in employment." (3)

Because GINA's employment discrimination provisions do not become effective until 18 months after the date of enactment (President Bush signed the Act on May 21, 2008) to give time for regulations to be promulgated, it is difficult to define what is and is not actually prohibited or allowed by the Act. Therefore, the following attempts to delineate what is and is not acceptable under GINA are based on legislative commentary, comments from www.genome.gov, and other available resources.

EMPLOYERS & INSURERS MAY NOT:

Request or Require "Genetic Testing" of an Individual or His/Her Family

Most importantly, employers and insurers may neither request nor require "genetic testing" of an individual or his/her family. "Genetic tests" include those tests that assess genotypes, mutations, or chromosomal changes, (4) such as:

  1. tests for BRCA1/BRCA2 (breast cancer) mutations

  2. tests for HNPCC (colon cancer) mutations

  3. classifications of genetic properties of an existing tumor to help determine therapy

  4. tests for Huntington's disease mutations

  5. carrier screening for disorders such as cystic fibrosis, sickle cell anemia, spinal muscular atrophy, and the fragile X syndrome

    Routine tests such as blood counts (CBC or blood panel), cholesterol tests, and liver-function tests are not protected under GINA. Also excluded from protection are analyses, including DNA analyses, of infectious agents such as bacteria, viruses, and fungi. For example, an HIV test is not covered because although a retrovirus inserts itself...

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