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Genetic Discrimination: Overview of the Issue and Proposed Legislation

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A key policy issue before Congress is whether the potential for genetic discrimination by employers and insurers merits protections for genetic information that are more extensive than those already in place for health information. For the stated purpose of prohibiting discrimination on the basis of genetic information with respect to health insurance and employment, the Genetic Information Nondiscrimination Act of 2007 (H.R. 493) was introduced in the House on January 16, 2007. On January 22, 2007, the act was introduced in the Senate (S. 358). The act is identical to the Genetic Information Nondiscrimination Act of 2005, which passed the Senate by a vote of 98-0 (S. 306, 109th). An identical House bill (H.R. 1227, 109th), never came to a vote. S. 306 was very similar to S. 1053 (108th), which the Senate passed in 2003 by a vote of 95-0. A distinct House bill, H.R. 1910 (108th), never came to a vote. This report focuses on the key points in the ongoing debate about genetic discrimination legislation.

S. 358 and H.R. 493 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. Supporters of the legislation further contend that without protection, individuals are hesitant to seek potentially beneficial genetic services or participate in much needed clinical research. Opponents believe that current law provides 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 are now focusing on the development of clinical applications based on the sequence information. One such application, clinical genetic testing, is becoming available at a rapid rate, and some tests are beginning to be included in health insurance benefits packages. Genetic testing may both facilitate and be inhibited by the potential for genetic discrimination.


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2007-03-07 version