New Database Focuses on Genetic Policy and Laws|
NHGRI Launches Free Web-based Resource For Finding Federal, State Laws Related to Genetic Issues
Bethesda, Maryland 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
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
"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 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.