HEALTH PRIVACY INFORMATION ALERT
February, 2005

Genetic Nondiscrimination Legislation Moves Forward

The Senate Health, Education, Labor and Pensions Committee approved by voice vote the Genetic Information Nondiscrimination Act of 2005, which establishes protections against genetic discrimination with respect to health insurance and employment. The bill, S.306, was introduced by Senator Olympia J. Snowe (R-Maine) and prohibits employers from using genetic information in employment decisions and insurance companies from denying coverage or basing premium rates on genetic information. The legislation also prohibits a group health plan or an issuer of a health insurance group health plan from “requesting or requiring” an individual or family member to undergo a genetic test. In addition, S. 306 establishes privacy protections for genetic information held by employers, employment agencies, and labor organizations.

S. 306 could pass the Senate.

As you know, this legislation could mark a bold step in protecting patient privacy and encouraging full participation in health care. Advances in genetics could produce untold benefits for disease prevention, detection, and management, but without trust that their health information will remain confidential and will not be used against them, many patients will withhold participation from both individual testing and research initiatives.

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