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Summary:
In April 2003, the finished 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, which 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, 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 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 has considered several bills concerning genetics during the past several Congresses. 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. 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.
