Alliance for Taxpayer Access

["Hamaker, Chuck" <cahamake@email.uncc.edu>]

Taxpayers Support "Open Access" to NIH Research; Public Interest Advocates
Join Forces to Support Congress and NIH Leadership

8/24/2004 12:03:00 PM

Contact: Bob Witeck, 202-887-0500 ext. 19 or <bwiteck@witeckcombs.com>,
for the Alliance for Taxpayer Access

WASHINGTON, Aug. 24 -- An unprecedented coalition of public interest
groups today announced the formation of the Alliance for Taxpayer Access.
The Alliance will urge 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.=20

The Alliance formation precedes the public interest meeting slated for
Tuesday, August 31 where NIH will receive input on how to improve public
access to the results of NIH-funded biomedical research.

The Alliance is an informal coalition of libraries, patient and health
policy advocates, and other stakeholders who support reforms that will
make publicly funded biomedical research accessible to the public. Details
and FAQ's on the Alliance may be found at < http://www.taxpayeraccess.org
<https://mx2.arl.org/Redirect/www.taxpayeraccess.org/> >.=20

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."=20

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."

Members of the Alliance for Taxpayer Access, at formation (in alphabetical
order), include: AIDS Action Baltimore; AIDS Vaccine Advocacy Coalition;
American Association of Law Libraries; American Library Association;
American Medical Student Association; Arthritis Foundation; Association of
Academic Health Sciences Libraries; Association of College & Research
Libraries; Association of Maternal and Child Health Programs; Association
of Research Libraries; Association of Southeastern Research Libraries;
Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic
Fibrosis Alliance; Boston College Libraries; Christopher Reeve Paralysis
Foundation; Coalition for Heritable Disorders of Connective Tissue;
Colorado State University Libraries; Conquer Fragile X Syndrome; Down
Syndrome Treatment and Research Foundation; Facing Our Risk of Cancer
Empowered; Genetic Alliance; International Mosaic Down Syndrome
Association; IsoDicentric 15 Exchange, Advocacy & Support; Medical Library
Association; National Alliance for Autism Research; National Coalition for
PKU & Allied Disorders; National Fragile X Foundation; National Tay-Sachs
& Allied Diseases Association, Inc.; New England Biolabs; Parent Project
Muscular Dystrophy; Prader-Willi Syndrome Association; Public Knowledge;
PXE International; Scholarly Publishing and Academic Resources Coalition;
Spina Bifida Association of America; Tourette Syndrome Association;
University of Connecticut Libraries; Wayne State University College of
Nursing.

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