Public Release: 

Alliance for Taxpayer Access asks NIH 'Who really owns publicly-funded medical research?'

After delay in planned announcement

Witeck Combs

WASHINGTON - In a letter sent Tuesday to National Institutes of Health (NIH) Director, Dr. Elias A. Zerhouni, the Alliance for Taxpayer Access, an informal coalition of stakeholders who support reforms that will make publicly funded biomedical research accessible to the public, expressed deep disappointment after NIH cancelled a planned briefing and announcement on new guidelines. No explanation was given for the cancellation of the announcement.

Advocates had hoped the NIH plan would make peer-reviewed articles on taxpayer-funded research fully accessible and available online at no extra cost to the American public. In the long-awaited Enhanced Public Access Policy, NIH was expected to issue a call to action to each grant recipient to voluntarily submit her or his peer-reviewed scientific research results to PubMed Central at the National Library of Medicine. By making this wealth of federally-funded research information available to spur innovation and improve health, NIH would work through its grantees to fulfill the 'research compact' that governs every grant of public funds by the agency.

In their letter, the Alliance for Taxpayer Access stated, "We are deeply disappointed by the delay in today's scheduled NIH announcement of its policy on enhanced public access to NIH research. We cannot understand, given the vital interest and importance of this research, especially to Americans awaiting the medical innovation that this public investment fuels, that there is any reason to further delay statement of a clear and open NIH policy."

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Full contents of the January 11, 2005 letter:

Dear Dr. Zerhouni:

The Alliance for Taxpayer Access is, as you know, a broad coalition representing patient advocates, distinguished scientific researchers, academic institutions, research libraries and others with a vital interest in the success of NIH research.

We are deeply disappointed by the delay in today's scheduled NIH announcement of its policy on enhanced public access to NIH research. We cannot understand, given the vital interest and importance of this research, especially to Americans awaiting the medical innovation that this public investment fuels, that there is any reason to further delay statement of a clear and open NIH policy.

The NIH's ability to stimulate outstanding intramural and external medical research has grown tremendously in the past several years, with the approval of Congress and the active support of many stakeholders. Surely NIH must pursue its entire research mission with a strong commitment to transparency and access. On this there can be no question or dispute.

While we are not directly knowledgeable of the specific details of the impending NIH policy (despite its apparently having been provided earlier to the publishing community), we were hopeful that today's NIH announcement would be an initial step toward immediate access to research. In recent years, NIH has been entrusted with vastly increased public resources to address needs that are critical to the American public. With this comes increased expectations that the NIH will act decisively to encourage immediate dissemination and use of its research. For NIH to hesitate in moving down this path, when Congress and the public clearly expect and deserve progress, would be truly disappointing.

We again urge you to implement a policy that reflects the agency's clear obligation to provide timely and complete access to its research.

Sincerely,

Richard K. Johnson
(Scholarly Publishing and Academic Research Coalition, on behalf of ATA)

AIDS Action Baltimore
AIDS Vaccine Advocacy Coalition
American Association of Law Libraries
American Library Association
American Medical Student Association
Arthritis Foundation
Asian and Pacific Islander American Health Forum
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
Barth Syndrome Foundation
Boston College Libraries
Boston Library Consortium
Christopher Reeve Paralysis Foundation
CUNY - City College Libraries
Coalition for Heritable Disorders of Connective Tissue
Colorado State University
Conquer Fragile X Syndrome
Denison University - Doane Library
Down Syndrome Treatment and Research Foundation
Eastern Kentucky University Libraries
Emory University - Woodruff Library
Facing Our Risk of Cancer Empowered
Genetic Alliance
Global Neuroscience Initiative Foundation
Greater Western Library Alliance
International Journal of Medical Sciences
International Mosaic Down Syndrome Association
IsoDicentric 15 Exchange, Advocacy & Support
Kent State University Libraries
Linda Hall Library of Science, Engineering & Technology
Loyola University Chicago Libraries
Medical Education Online
Medical Library Association
Mycosis Fungoides Foundation
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
Oberlin College
Ohio Library and Information Network
Parent Project Muscular Dystrophy
Prader-Willi Syndrome Association
Public Knowledge
Public Library of Science (PLoS)
Pseudoxanthoma Elasticum (PXE) International
Scholarly Publishing and Academic Resources Coalition
Special Libraries Association
Spina Bifida Association of America
Tourette Syndrome Association
University of Colorado at Boulder - University Libraries
University of Connecticut Libraries
University of Kansas
University of New Hampshire
University of Wisconsin-Madison Libraries
University of Wisconsin Oshkosh - Polk Library
Utah Academic Library Consortium
Wayne State University College of Nursing
Williams College Libraries

cc: Hon. Tommy Thompson
Hon. Michael Leavitt
Hon. Michael Enzi
Hon. Joe Barton
Hon. Arlen Specter
Hon. Ralph Regula
Hon. John Graham

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