Washington DC (July 21, 2004) The Genetic Alliance, a coalition of 600 member organizations that advocate for patient families across America, has urged Congress to support a National Institutes of Health (NIH) policy requiring that biomedical research funded through NIH grants or contacts be available at no extra cost to the public.
Sharon Terry, President and CEO of the Genetic Alliance, noted, This consumer-centered measure is a long overdue means by which to enhance public health education, speed the translation of genetic advances into quality, affordable health care, and inform and empower patients in their health care decisions.
In the text of her letter to Representative Ralph Regula (R-OH), Chairman of the Labor, Health and Human Services, Education and Related Agencies Appropriations Subcommittee, Terry also argued: Today, the Internet brings access to millions of pages of information yet most American taxpayers do not have access to the reports on biomedical research conducted with U.S. government funds.
It is sometimes suggested that this information is not available to the homemaker in Nebraska because she is ill equipped with to deal with this information. We know, from our 600 members disease-specific advocacy organizations that the homemaker has many resources to help her use that information. This access is critical for thousands of rare diseases; clinicians are unable to keep up with the information on 6000 rare diseases, and patients must be the bridge to new knowledge.
Terrys letter supports a provision developed by Regulas subcommittee and approved by the House Appropriations Committee to remove barriers to open access by requiring the results of research funded by the National Institutes of Health (NIH) be made available online, upon or shortly following publication, for no extra charge to the American people.
The Genetic Alliance is nonprofit international coalition comprised of millions of individuals with genetic conditions and more than 600 advocacy, research and health care organizations that represent their interests. The Genetic Alliance promotes healthy lives by working to speed the translation of genetic advances into quality and affordable health care, public awareness, and consumer-centered public policies. More information on the Alliance may be found at www.geneticalliance.org.
Editors Note: The Foundation for Ichthyosis & Related Skin Types is a member of the Genetic Alliance.
