RL32478
Genetic Testing: Scientific Background and Nondiscrimination Legislation
July 20, 2004

Download Locations:

Thurgood Marshall Law Library/University of Maryland School of Law

Summary:

Genetic discrimination and privacy continue to be outstanding issues in the second session of the 108th Congress. On October 14, 2003, the Senate passed the Genetic Information Nondiscrimination Act of 2003 (S. 1053) by a vote of 95-0. The House version (H.R. 1910) currently has 237 co-sponsors and is pending action in three House committees: Energy and Commerce, Ways and Means, and Education and Workforce. S. 1053 is supported by consumer groups, the medical profession, researchers, the medical products industry (including pharmaceutical companies), and President Bush, and is opposed by some members of the health insurance industry and the U.S. Chamber of Commerce. 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. This paper provides a comprehensive overview of the current status of genetic testing in the United States. The discussion focuses on the key points in the ongoing debate regarding the need for and structure of a new law prohibiting discrimination based on genetic information: