Open Access News

My children have a genetic disease. It is rare, not well understood, and there is no treatment or cure. However, the most disturbing obstacle we face is the wall around published scientific research. Information critical to health and biomedical research is held hostage by questionable and arcane publishing practices. It is time for publishers, both private and academic, to redesign their business models in response to a new age of information sharing and a stronger sense of the scientific commons....Information is a powerful raw material, but the work of improving health through biomedical research is made more difficult because of current barriers to information. These barriers shocked my husband and me as we began to make sense out of our children’s disease....We spent hours copying articles from bound journals. But fees gate the research libraries of private medical schools. These fees became too costly for us to manage....We learned that by volunteering at a hospital associated with a research library, we could enter the library for free. After several months of this, policies changed and we resorted to masking our outdated volunteer badge and following a legitimate student (who would distract the guard) into the library....Although the United States wisely invests billions of dollars in biomedical research through the National Institutes of Health (NIH), we discovered that the results are locked up in very costly annual journal subscriptions and institutional licenses that can cost thousands of dollars for a single journal, or made scarce by use-limiting, per-article charges that can run as much as $30 to read a single study....If families are effectively barred from having access to these articles, what of the effect on researchers and clinicians with limited budgets striving to make new discoveries? Or on educators sharpening the skills of the next generation of medical practitioners? We learned that these fees were a burden to libraries, and that only the largest schools could afford the full complement of journals. We also learned that other clinicians --social workers, physical and occupational therapists, genetic counselors-- don’t usually have access either. Our experience forces us to ask the hard question: Who really owns the NIH biomedical research we fund with our tax dollars?...New notions of cooperation, collaboration, transparency, and access are now challenging the status quo. It is now time to unlock this science and make it more accessible to all of us. Fortunately, change is in the works. NIH Director Elias Zerhouni confirmed some months ago that the “status quo is unacceptable.” In fact, under his direction and endorsed by the U.S. House of Representatives, NIH has implemented a cost-effective and balanced policy that, for the first time, will make virtually all NIH-funded research free and accessible online to all Americans....Ultimately we would like all government agencies to require that published papers resulting from publicly funded research be deposited in PubMed Central, or similar repositories, with no embargo. I recommend that these articles be the final edited versions, with links to the journals on the publishers’ sites....Public access to literature is critical. It is the bedrock of our system and the catalyst for science to build on science. Scholars and educators will find riches of new data and studies to use in classrooms; researchers across disciplines will have new opportunities for collaboration as they scan this treasure of publicly funded knowledge; and the work of all authors will be used and cited more frequently, enhancing their reputation and contribution to their field. For the rest of us, living on the promise and inestimable value of publicly funded science, we will have access to the information we need to educate our doctors and to help the research community make connections as the basis for translating basic research into treatment and cures. We have no time to lose: we need public access to government-funded science now.