From Concerned Parent to Scientific Author
With news of the potential scuttling of the NIH proposal buzzing among librarians at the ALA Midwinter Meeting, perhaps the most compelling speaker at the SPARC forum on the NIH proposal was Sharon Terry, now president and CEO of the Genetic Alliance, and a leading voice in the Alliance for Taxpayer Access. Terry sought to illustrate what’s at stake regarding access to scientific literature.
Years ago, she earned a modest living as a college chaplain and her husband, without a college education, worked in construction. The couple’s two young children were diagnosed with a rare cancer, and given few options for treatment. For years, the parents took turns attempting to learn more, but were barred from libraries or charged fees to visit. They resorted to "stealing passwords" and finding other ways to access research and educate themselves. Years later, Terry and her husband had helped isolate the gene that caused the rare cancer afflicting their children, were able to help doctors devise a treatment, published two research articles in the prestigious journal NATURE, patented the gene–and even started a biotech company. Today, the children are doing well. The story moved some to tears. As for the publishers who told her that her crusade to open up medical research could cause harm, she said, "We live in a new age. We can’t be held back by a model that is hundreds of years old."
[Library Journal Academic Newswire, January 18, 2005]
