Genetic Information: Legal Issues Relating to Discrimination and Privacy (CRS Report for Congress)
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| Release Date |
Revised April 28, 2008 |
| Report Number |
RL30006 |
| Report Type |
Report |
| Authors |
Nancy Lee Jones, American Law Division; Amanda K. Sarata, Domestic Social Policy Division |
| Source Agency |
Congressional Research Service |
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Summary:
In April 2003, the sequence of the human genome was deposited into public databases. This milestone, which has been compared to the discoveries of Galileo, and other advances in genetics have created novel legal issues relating to genetic information. The Human Genome Project produced detailed maps of the 23 pairs of human chromosomes and sequenced 99% of the three billion nucleotide bases that make up the human genome. The sequence information should aid in the identification of genes underlying disease, raising hope for genetic therapies to cure disease, but this scientific accomplishment is not without potential problems. For instance, the presence of a specific genetic variation may indicate a predisposition to disease but does not guarantee that the person will manifest the disease: How should an employer or insurer respond? The ethical, social and legal implications of these technological advances have been the subject of significant scrutiny and concern.
The legal implications of such information have been addressed in various ways largely by states, but also by Congress. The Health Insurance Portability and Accountability Act of 1996, P.L. 104-191, is the first federal law to specifically address discrimination and insurance issues relating to genetic discrimination. Congress is currently considering genetic discrimination legislation. H.R. 493, the Genetic Information Nondiscrimination Act of 2007 (GINA), was introduced in the 110th Congress by Representative Slaughter and 143 cosponsors on January 16, 2007. It passed the House on April 25, 2007. A companion bill, S. 358, 110th Congress, was introduced by Senator Snowe and 22 cosponsors on January 22, 2007, and has been reported out of the Senate Labor and Human Resources Committee. On March 5, 2008, the text of H.R. 493 as passed by the House was added to the end of the Paul Wellstone Mental Health and Addiction Equity Act of 2007 (H.R. 1424) in the engrossment of H.R. 1424. 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. The House is expected to pass H.R. 493 (as amended) during the week of April 28, 2008.
In the 109th Congress, S. 306, the Genetic Information Nondiscrimination Act of 2005, was passed on February 17, 2005, by a vote of 98-0. A companion bill, H.R. 1227, was introduced on March 10, 2005, and another bill, H.R. 6125 was introduced on September 20, 2006. In the 108th Congress, the Senate passed the Genetic Information Nondiscrimination Act of 2003, S. 1053. H.R. 1910 was introduced in the House and hearings were held, but the bill was not passed in the 108th Congress. This report discusses current federal law, state statutes, and legislation. It will be updated as needed.
