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New Database Focuses on Genetic Policy and Laws

NHGRI Launches Free Web-based Resource For Finding Federal, State Laws Related to Genetic Issues

BETHESDA, Md., Mon., July 19, 2004 - The National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH), today unveiled a new Web-based resource that will enable researchers, health professionals and the general public to more easily locate information on laws and policies related to a wide array of genetic issues.

The NHGRI Policy and Legislation Database is located on NHGRI's Web site at www.genome.gov/LegislativeDatabase. The free, searchable database currently focuses on the following subject areas: genetic testing and counseling; insurance and employment discrimination; newborn screening; privacy of genetic information and confidentiality; informed consent; and commercialization and patenting.

"This is a tremendous resource for anyone interested in learning more about the laws, regulations and policies pertaining to genetics and genomics. It will serve as a valuable tool for all Americans, from academic researchers seeking to patent genetic technologies to average citizens trying to determine what protections exist in their states against genetic discrimination," said NHGRI Director Francis S. Collins, M.D., Ph.D.

The resource features a convenient, interactive map of the United States that enables users to view state legislation and laws for any of the 50 states and the District of Columbia by simply clicking on that jurisdiction. Users also can search the database by keyword, content type, topic and/or source, and can also sort the information by date or citation.

The database, which will be updated on a regular basis, contains links to full-text copies of federal and state laws/statutes; federal legislative materials; and federal administrative and executive materials, including regulations, institutional policies and executive orders. Abstracts are also provided that summarize the government materials in lay language.

The new database is managed by NHGRI's Office of Policy, Communications, and Education (OPCE), which develops policy related to the societal implications of human genome research. "This database fills a long-standing need in the genetic policy arena. It is literally a one-stop shop for anyone with an interest in this rapidly developing field," said OPCE Director Alan E. Guttmacher, M.D. "We think it will be of interest to a broad array of users, including legislators and policymakers at the local, state and federal levels."

In addition to federal and state laws, the database includes materials from these current and former federal agencies and advisory panels: Department of Health and Human Services (HHS); the Department of Health, Education and Welfare; the Equal Employment Opportunity Commission; the U.S. Patent and Trademark Office; the HHS Secretary's Advisory Committee on Genetics, Health and Society; and the President's Council on Bioethics.

This fall, NHGRI plans to add more categories of content to the database, primarily in the areas of foreign statutes and laws, foreign policy, treaty and international agreements, and policy material from international organizations.

NHGRI is one of the 27 institutes and centers at NIH, an agency of the Department of Health and Human Services. Additional information about NHGRI can be found at its Web site, www.genome.gov.

For more information, contact:

Geoff Spencer, NHGRI
Phone: (301) 402-0911
E-mail: spencerg@mail.nih.gov

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Last Reviewed: September 2006