October 17, 2007
To the United States Senate:
As an organization that includes more than 600 advocacy, research, and healthcare organizations that represent the interests of millions of individuals living with genetic conditions, we are writing to ask for your support to ensure that U.S. taxpayers have timely and free access to articles reporting on government-funded research. Specifically, we are interested in the inclusion of language put forth in the Labor, Health and Human Services, Education and Related Agencies Appropriations bill directing the National Institutes of Health (NIH) to implement a mandatory deposit policy for all research articles stemming from NIH-funded research. There has been extensive consideration of this change in policy and we request that the language neither change nor be removed from Appropriations measures.
American taxpayers are entitled to access on the Internet to the peer-reviewed scientific articles on research funded by the U.S. government. Widespread access to the information contained in these articles is an essential, inseparable component of our nation's investment in science.
Over the more than two years since its implementation, the NIH's current voluntary policy has failed to achieve any of the agency's stated goals, attaining a deposit rate of less than 5% by individual researchers. A mandate is required to ensure that NIH is able to track its investments and corresponding results in federally funded research, have a complete archive of this research, and enhance public access to these assets.
Thank you for considering this matter.
Sincerely,
Sharon F. Terry, MA
President and CEO
Organizations
Alpha-1 Association
Alpha-1 Foundation
American Celiac Disease Alliance
American Health Information Management Association
American Syringomyelia Alliance Project
BCCNS Life Support Network
Biotechnology Institute
Bosom Buddies, Inc.
Cardio-Facio-Cutaneous International
CARES Foundation, Inc
Centronuclear Myopathy Project
CFC International
Coalition of Heritable Disorders of Connective Tissue
COPD Foundation
Cutaneous Lymphoma Foundation
Cutis Laxa Internationale
Cystinosis Research Network
Genetic Alliance BioBank
Genomic Health
Hadassah, the Women's Zionist Organization of America
Hemophilia Federation of America
Hereditary Angioedema Association
HHT Foundation International
In Need of Diagnosis, Inc
International Association of Sickle Cell Nurses and Physician Assistants
Lymphatic Research Foundation
Massachusetts Families Organizing for Change
Moebius Syndrome Foundation
National Tay-Sachs and Allied Diseases Association
National Urea Cycle Disorders Foundation
NBIA Disorders Association
National Foundation for Ectodermal Dysplasia
National Organization for Rare Disorders
Northern Nevada Genetic Counseling
National Niemann-Pick Disease Foundation
Organic Acidemia Association
Parent Project Muscular Dystrophy
Periodic Paralysis Association
Periodic Paralysis News Desk
PKD Foundation
Progeria Research Foundation, Inc.
Project DOCC - Delivery of Chronic Care
PXE International
SADS Foundation
Sequenom, Inc.
Shwachman Diamond Syndrome Foundation
The Annie Appleseed Project
Trisomy 9 Parent Support Group
Us TOO - Wichita Chapter
Y-ME National Breast Cancer Organization
Doreen Allen
Beverly Avery
Sherry Davis
Jannine Dobson
Elmer Dreyer
Donna Harbaugh
Vicki Keene
Jennifer L. Kennada
Mary Leblanc
Terry Mac Dermaid
Penny Mahy
Kathryn L. Maish
Monique K. Mansoura
Janice Newman
New York, NY
John Stark
Johannesburg, South Africa
Jackson, MI
Wichita, KS
Oconomowoc, WI
Glastonbury, CT
Stoystown, PA
Crossett, AR
Evansville, IN
Burlington, CT
Ferndale, MI
Decatur, GA
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Washington, DC
New York, NY
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Celina, TX
