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 22 May 2018

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News

NIH launches new database focusing on genetic policy and laws

A new free web-based database has been launched by the National Institutes of Health to provide information on laws and policies relating to a wide variety of genetic issues throughout the United States.

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The National Human Genome Research Institute (NHGRI), which is part of the National Institutes of Health (NIH), has launched the website, which can be found at www.genome.gov/LegislativeDatabase .

The website is aimed at researchers, health professionals and the general public and will hopefully enable such people to more easily locate information on laws and policies relating to a range of genetic issues.

Known as the NHGRI Policy and Legislation Database, the resource, which is free to use and fully searchable, currently provides information on the following areas: genetic testing and counseling; insurance and employment discrimination, newborn screening; privacy of genetic information and confidentiality; informed consent; and commercialization and patenting.

It also features an 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 can also search the database by keyword, content type, topic and/or source, and can also sort the information by date or citation.

[This database] is literally a one-stop shop for anyone with an interest in this rapidly developing field
Dr Alan E. Guttmacher, NHGRI

In addition, 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.

As well as federal and state laws, the database includes materials from current and former federal agencies and advisory panels including the Department of Health and Human Services, the Department of Health, Education and Welfare, the Equal Employment Opportunity Commission, the U.S. Patent and Trademark Office, the Secretary's Advisory Committee on Genetics, Health and Society and the President's Council on Bioethics.

In the future 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.

"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 Dr Francis S. Collins.

"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 Dr Alan E. Guttmacher, director of NHGRI's Office of Policy, Communications, and Education, which develops policy related to the societal implications of human genome research, and manages the website.

"We think it will be of interest to a broad array of users, including legislators and policymakers at the local, state and federal levels."

National Institutes of Health
21 July 2004

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