Sharon Terry is a highly visible advocate for the emerging issue of online public access to federally funded research. Her advocacy stems from painful personal experience. As a young mother, she learned that her two children had a rare and incurable genetic disease (pseudoxanthoma elasticum or PXE) that can disfigure skin, cause blindness, and result in other serious health issues. She and her husband Pat wanted to learn everything they could about their children's illness, and they set out on a determined path to educate themselves.
They were soon shocked at the financial and access barriers they faced in gaining access to research literature. Since they were not affiliated with a university or medical school, they couldn't use licensed electronic journals. If they went directly to publishers' websites, the Terrys would amass fees ranging from $25 to $40 per article.
Sharon Terry, however, is an exceptional person. She and Pat devised ways around those fee-based barriers that included volunteering at a hospital library to get online access to its journal subscriptions and "borrowing" passwords from university students. Although they were of modest means and had no scientific background, they became experts on PXE and founded a nonprofit organization to advance research on the disease. Working with a network of scientists they became codiscoverers of the gene responsible for PXE, the first lay coinventors of a gene patent, and the creators of a genetic test for the disease.
Since 2002, Terry has been president of the Genetic Alliance, a coalition of 600 disease-specific organizations that advocates for better health-care treatments for genetic illnesses. Her organization is also part of the Alliance for Taxpayer Access, a growing coalition of organizations and institutions that support open online access to federally funded research.
Sharon's advocacy for public access stems not only from her experience, but also from first-hand knowledge of those who encounter similar barriers in using research information. Untold numbers of Americans have legitimate, pressing needs for research literature. They may want to read current and credible studies about a disease or medical condition and to make sure that their physicians are familiar with the latest health research findings; or they may be interested in an educational concern that relates to their children, or want to investigate an environmental topic that affects their community. Almost without exception, they find that their local public or academic library does not have the journals they need and they are unable to pay expensive per-article charges that mount up quickly for anyone who's doing extensive research in the journal literature.
As Mary Dempsey, commissioner of Chicago Public Library, points out, "It's extremely unfortunate that federally funded medical and scientific research is largely inaccessible to the public, and thus denied to those who originally funded it and for whom it was conducted--the American people."
Faculty also flummoxed
It's not just the general public that lacks access: College and university researchers face serious problems, too. Just ask Gary Ward, associate professor of microbiology and molecular genetics at the University of Vermont in Burlington. Ward conducts research in a specialized area of cell biology. The work that he and his departmental colleagues do is relevant to many illnesses, including cancer and AIDS.
Ward estimates that he can access 66%-75% of the articles that he needs for his research thanks to journal subscriptions and database-license agreements at the university's Dana Medical Library. For the articles that his library can't provide, he's dependent on the much-more-time-consuming process of interlibrary loan. Given time constraints and the cost of transactions, he utilizes ILL only if he's certain that the article he's seeking will be relevant. …