Fw: Genetic Alliance Backs ³Open Access² to NIH-Funded Medical Research

[Guest guest]

For Immediate Release

July 21, 2004

Genetic Alliance Backs ³Open Access² to NIH-Funded Medical Research

Disease and Patient Advocates ³Must be the Bridge to New Knowledge²

Washington, DC (July 21, 2004) ­ The Genetic Alliance, a coalition of 600

member organizations that advocate for patient families across America, have

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, ³This

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.²

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: ³Today, the Internet brings

access to billions of pages of information ­ yet most American taxpayers do

not have access to the reports on biomedical research conducted with U.S.

Government funds.²

³It is sometimes suggested that this information is not available to the

Ohomemaker in Nebraska¹ because she is ill equipped 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. Sthis access is critical for the thousands of rare diseases ­

clinicians are unable to keep up with information on 6000 rare diseases, and

patients must be the bridge to new knowledge.²

Terry¹s letter [copy available upon request] supports a provision developed

by Regula¹s subcommittee and approved by the House Appropriations Committee

to remove barriers to open access by requiring the results of researched

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 a 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

http://www.geneticalliance.org/> .

Press contacts:

Sharon F. Terry Ghanbarpour, MA

Director of Outreach

Phone: sghanbar@...

sterry@...