
November 2004
Contact: Glynnis Breen [email protected] 202-887-0500 Association of Research Libraries
Who really owns publicly-funded medical research?The perspectives of patient advocates and public users press briefing @ 11:30 AM (ET) Thursday, November 11, 2004 Press Briefing @ 11:30 AM (ET) Thursday, November 11, 2004
Background: This year, an unprecedented coalition of U.S. public interest leaders urged the National Institutes of Health to ensure that peer-reviewed articles on taxpayer-funded research at NIH become fully accessible and available on line at no extra cost to the American public.
The National Institutes of Health (NIH) is now looking deeply at taxpayer access. On September 3, 2004, they published a proposal, Enhanced Public Access to NIH Research Information, NOT-OD-04-064, in their online Guide for Grants and Contracts, that makes NIH research available online, within six months of publication, for no extra charge to the American public. The NIH proposal is found at http://grants1.nih.gov/grants/guide/notice-files/NOT-OD-04-064.html
Patient advocates and public interest groups are increasingly concerned that their voices are being left out of this critical dialogue between government and giant publishing interests at the sacrifice of legitimate citizen input, public health priorities and the urgency to advance the discoveries of biomedical research. This briefing will highlight the stories, concerns and needs of patient advocates and public interest groups in this important science dialogue.
Who: Sharon Terry, President and CEO, The Genetic Alliance Pat Furlong, Parent Access Project for Muscular Dystrophy Rick Johnson, Director, Scholarly Publishing and Academic Resources Coalition
Where: Offices of the Genetic Alliance 4301 Connecticut Avenue N.W. [Van Ness Metro Stop] Suite 404 Washington DC [Phone: 202-966-5557 x 213]
When: 11:30 AM ET Thursday, November 11, 2004
What: Briefing for journalists about patient advocacy and public interests that help answer the fundamental question � Who Really Owns Publicly-Funded Medical Research?
Press Contacts: Bob Witeck or Glynnis Breen 202-887-0500 ext. 19 or ext. 26 [email protected] or [email protected]
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