Published Sep 14, 2004
Washington, D.C. - An informal coalition of public interest groups, including libraries, patient and health policy advocates, has come together to form the Alliance for Taxpayer Access. The Alliance urges the National Institutes of Health as well as Congress to ensure that peer-reviewed articles on taxpayer-funded research at NIH become fully accessible and available on line and at no extra cost to the American public.
The alliance's formation preceded the public interest meeting that took place in late August where NIH received input on how to improve public access to the results of NIH-funded biomedical research. In advance of attending the meeting, ATA submitted a letter [PDF] addressed to Dr. Elias Zerhouni, director of the NIH, offering its support for his efforts to provide access to taxpayer-funded research. The alliance also submitted a letter [PDF] to each member of the U.S. Congress asking for their support of language in favor of taxpayer-access to NIH research reports that was proposed by a House of Representatives subcommittee charged with NIH oversight.
Today the vast majority of research funded with public dollars is available only through increasingly costly journal subscriptions (often costing thousands of dollars annually for a single journal), institutional licenses (more than a million dollars annually for many universities), or per article purchases (as much as $30 per article). Alliance supporters believe the current system of subscription-based access to scientific research is economically unsustainable and effectively impedes the dissemination and use of research that has been paid for with public dollars.
Alliance supporter Sharon Terry, President and CEO of the Genetic Alliance, said, "This consumer-centered approach 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."
"It is sometimes suggested that this information is not available to the ‘homemaker in Iowa' 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. This access is critical; we know first-hand that clinicians are unable to keep up with information on 6000 rare diseases, and patients must be the bridge to new knowledge."
Acknowledging the key role of individuals volunteering for clinical tests, Mitchell Warren, Executive Director of the AIDS Vaccine Advocacy Coalition, said that, "Open access is consistent with cornerstone principles of respect for persons when conducting research on human subjects and will contribute to the willingness of individuals to participate in subsequent research because they have full, shared, knowledge of results."
"In the digital age, with the extraordinary public benefits of cutting-edge research, it is counter-productive for there to be costly barriers preventing the fullest possible availability of quality information about current research findings," said Rick Johnson, spokesman for the group. Johnson also serves as director of the Scholarly Publishing and Academic Resources Coalition (SPARC), a member of the new Alliance. "We agree with leaders at NIH and on Capitol Hill that the status quo is unacceptable when most American taxpayers do not have access to the reports on biomedical research conducted with U.S. Government funds."
Barbara Redman, Dean of the College of Nursing at Wayne State University, echoed concerns of educators' within the Alliance: "Access to emerging NIH-funded medical research is invaluable to the transfer of knowledge in every instructional setting. Faculty and students alike benefit from access to biomedical reports in all fields, and we applaud NIH leadership in furthering this initiative."
Dr. Richard Roberts, 1993 Nobel Laureate in medicine and currently with New England Biolabs, added his support: "Open access to the scientific literature is the single most important advance that we can make in the distribution of research results to scientists and the public alike. I find that a majority of my fellow scientists and Nobel Laureates agree that this new initiative is groundbreaking, long overdue and will ensure that we all can read about the results of our government's support of research. I am heartened that taxpayers representing broad stakeholders in this issue have joined forces to endorse the principle of open access to the scientific literature we produce through our investment of public dollars. This is good for science and good for the American public."