Carrier Screening Information

President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law on May 21, 2008. Here is a quick guide to the Genetic Information Nondiscrimination Act:

What GINA does

  • Prohibits group and individual health insurers from requesting or requiring genetic testing of an individual and his or her family
  • Prohibits group and individual health insurers from using genetic information to determine eligibility or establish premiums
  • Prohibits employers (including employment agencies and labor organizations) from requesting or requiring genetic testing of an individual or his or her family
  • Prohibits employers from using genetic information to make hiring or promotional decisions, or when determining eligibility for training programs.

What GINA does not do

  • Does not prevent heath care providers from recommending genetic tests to their patient
  • Does not mandate coverage for any tests or treatments
  • Does not prohibit medical underwriting based on current health status
  • Does not cover life, disability, or long-term care insurance
  • Does not prohibit workplace collection of genetic information for toxic monitoring programs, employer-sponsored wellness programs, administration of federal and state Family and Medical Leave laws, and in certain cases of inadvertent acquisition of information. However, the employer may not use or disclose the information.
  • Does not apply to members of the military

GINA defines genetic information to include information about: a person’s genetic tests, genetic tests of a family member (up to and including fourth-degree relatives), manifestation of disease or disorder in a family member and participation of a person or family member in research that includes genetic testing, counseling or education. Genetic tests refer to tests that assess genotypes, mutations or chromosomal changes. Protected tests include carrier screening for diseases such as Tay-Sachs and Canavan.

The above information is presented as a broad overview of GINA. For more information please visit Genetics and Public Policy Center (www.DNApolicy.org), the Coalition for Genetic Fairness (www.geneticfairness.org) and the Secretary’s Advisory Committee on Genetics, Health and Society (www4.od.nih.gov/oba/SACGHS).