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Summary:
On June 26, 2000, in a special ceremony at the White House, the completion of the "rough draft" of the human genome was announced. 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, with its goal of producing detailed maps of the 23 pairs of human chromosomes and sequencing the three billion nucleotide bases that make up the human genome, has been instrumental in the identification of genes implicated in various diseases including glaucoma, colon cancer, and cystic fibrosis. With the identification of these genes comes the hope of genetic therapies to cure disease but this scientific accomplishment is not without potential problems. For instance the presence of a cancer causing gene may indicate a predisposition but does not guarantee that the person will contract 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 mainly on the state level but there are some relevant Federal statutes. 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 has considered several bills concerning genetics during the past several Congresses but has not enacted comprehensive legislation. However, on May 21, 2003, the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously passed a manager's substitute amendment to S. 1053 which is designed to protect against genetic discrimination (Press Release, HELP Committee, HELP Cmte. Passes Bipartisan Genetic Anti-Discrimination Legislation, May 21, 2003). This report discusses current federal law, state statutes, and legislation. It will be updated as needed.
