Genetic Discrimination: Overview of the Issue and Proposed Legislation (CRS Report for Congress)
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| Release Date |
Revised April 25, 2008 |
| Report Number |
RL33903 |
| Report Type |
Report |
| Authors |
Erin D. Williams and Amanda K. Sarata, Domestic Social Policy Division |
| Source Agency |
Congressional Research Service |
| Older Revisions |
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Summary:
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 and was passed by the House on April 25, 2007. On January 22, 2007, the act was introduced in the Senate (S. 358) and was reported favorably out of the HELP Committee on March 29, 2007. On April 24, 2008, the Senate took up H.R. 493, replaced the existing language with an amendment in the nature of a substitute, and passed the measure, as amended, by a vote of 95-0. H.R. 493, as amended and passed by the Senate, is very similar to the version passed by the House last year. The most significant difference is new language strengthening the "firewall" between Title I and Title II of the act.
Genetic nondiscrimination legislation is 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. Issues surrounding nondiscrimination addressed in this report include:
What is health information and how is it currently used by health insurers and employers?
What is genetic information?
Is genetic information different from other health information?
What evidence exists to suggest that discrimination is a problem?
Would the proposed legislation be sufficient to protect "genetic information" and "genetic tests" that are of concern?
