Genetic Testing: Scientific Background and Nondiscrimination Legislation

Publication Date: March 2005

Publisher: Library of Congress. Congressional Research Service

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Research Area: Health

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Abstract:

Issues surrounding genetic discrimination and privacy in health insurance and employment are currently being debated in the109th Congress. On February 7, 2005, Senator Snowe introduced S. 306, the Genetic Information Nondiscrimination Act of 2005. The Senate passed S. 306 on February 17, 2005 by a vote of 98-0. On March 10, 2005, Representatives Biggert, Slaughter, Ney, and Eshoo introduced an identical bill, H.R. 1227, in the House. S. 306 is identical to S. 1053 introduced in the 108th Congress, which the Senate passed in 2003 by a vote of 95-0. A House bill, H.R. 1910, did not come to a vote in before the conclusion of the 108th Congress. This report provides a comprehensive overview of the status of genetic testing in the United States. The discussion focuses on the key points in the ongoing debate facing the 109th as S. 306 and H.R. 1227 are considered.

S. 306 / H.R. 1227 are supported by consumer groups, the medical profession, researchers, the medical products industry (including pharmaceutical companies), and President Bush, and are opposed primarily by the U.S. Chamber of Commerce. Since the first bills were introduced in the 103rd Congress, many of the arguments and positions supporting and opposing genetic nondiscrimination legislation have remained largely unchanged. Supporters of nondiscrimination legislation feel that current laws are not sufficient to protect individuals from discrimination in health insurance or employment. Further, without protection, individuals are hesitant to seek potentially beneficial genetic services or participate in much needed clinical research. At this stage of debate, opponents believe that current laws provide sufficient protection. They are primarily concerned that new legislation will provide further incentives and additional opportunities for litigation against employers.

Collectively, genetic diseases and common diseases with a genetic component pose a significant public health burden. With completion of the human genome sequence, scientists will now focus on understanding the clinical implications of the sequence information. Clinical genetic tests are becoming available at a rapid rate. Testing is regulated by the federal government and tests are beginning to be included in health insurance benefits packages.