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Executive Committee

Sharon F. Terry, Chair,
Genetic Alliance

Cynthia Pellegrini,
American Academy of Pediatrics

Derek Scholes,
American Heart Association

Joann Boughman,
American Society of Human Genetics

Timothy Leshan,
Brown University

Marla Gilson,

Barbara Harrison,
National Society of Genetic Counselors

Jeremy Gruber,
Council for Responsible Genetics


For Health Insurers

The following protections in health insurance take effect on May 21, 2009.

GINA covers genetic information of an individual and the genetic information of family members (for example, in determining family health history of disease). GINA does not cover an individual's manifested disease or condition - a condition from which an individual is experiencing symptoms, being treated for, or that has been diagnosed.

GINA outlines the following activities as unlawful insurance practices and discriminatory on the basis of genetic information:

  • The requirement that individuals provide genetic information or the genetic information of a family member in determining eligibility, coverage, underwriting, or premium-setting decisions, in the group, Medicare supplemental policy, or individual health insurance markets. However, a health insurer may request that an individual provide genetic information if coverage of a particular claim may be appropriate only if there is a known genetic risk. For additional information, please read the Q&A portion below, entitled "What information can insurers request in making coverage determinations for specific claims?";

  • The use genetic information either collected with intent, or incidentally, to make enrollment or coverage decisions;

  • The request or requirement that an individual or an individual's family member undergo a genetic test; and;

  • The use of genetic information as a preexisting condition in the Medicare supplemental policy and individual health insurance markets.

Research exception: For joint research activities conducted in collaboration with external research entities, a health insurer in either the group or individual market may request, but not require, in writing that an individual undergo a genetic test. The compliance by the individual with such a request is voluntary, and noncompliance shall not have a negative effect on the premium or enrollment status of the individual. Genetic information may only be used for research and not for underwriting purposes.

arrow icon What information can insurers request in making coverage determinations for specific claims?

Last Updated: November 10, 2008

Please contact Andria Cornell at (202) 966-5557 x207 or acornell@geneticalliance.org with any questions about the Coalition for Genetic Fairness and its activities.


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