Open Access Week 2014: Maximizing the Potential of Billions

Events around the world celebrating the “knowledge in the commons” were in full swing this past week (October 20-26 2014), as academic and research institutions alike ushered in “Generation Open” for Open Access Week 2014. Events celebrated the potential of students and early-career researchers as advocates for Open Access, and also took a closer look at how changes in scholarly publishing can affect individuals at different stages in their careers. Most importantly, however, Open Access Week 2014 continued to serve as a learning opportunity about the potential benefits of Open Access – something we always like to revisit. Open Access can refer to many things. For instance, we at Free the Data often talk about the importance of open access to genetic variant data in understanding human health! In the context of Open Access Week, however, Open Access to information refers specifically to “the free, immediate, online access to the results of scholarly research, and the right to use and re-use those results as you need”. As the Open Access Week website states, open access to these results has “the power to transform the way research and scientific inquiry are conducted” as well as “the potential to maximize research investments, increase the exposure and use of published research, facilitate the ability to conduct research across available literature, and enhance the overall advancement of scholarship.” An open access model will not only simplify multiple aspects of the research endeavor, then – it will also greatly increase the number of people who are able to read and contribute to research. With Open Access, just about anyone with an internet connection will have the opportunity to get involved. Open Access Week supporters, like the Scholarly Publishing and Academic Resources Coalition (SPARC) and the digital rights group Electronic Frontier Foundation (EFF), have been expanding on this theme. Nick Shockey, Director of Programs and Engagement at SPARC, and Maira Sutton, Global Policy Analyst at EFF, participated in a reddit Ask Me Anything (AMA) session on Thursday. Both stressed the unknown and “untapped potential of billions” which is restricted by unequal access to information and research, which is in turn mediated by the availability of capital (or lack thereof). As Nick Shockey of SPARC pointed out, “…there are more than 15 entire academic disciplines in which the average ISI-indexed journal is more than $1,000 per institutional subscription per year”, locking out most of the world’s population from participating in or contributing to research. And this lack of diversity in research and academia is rightfully considered a hindrance. As Maira Sutton of EFF explains, “… having many people with diverse background and experiences think about our cutting edge scientific and academic problems means these topics are approached in new ways and that’s sure to lead to some big advances in our understanding.” As examples, Nick goes on to cite Jack Andraka and Sharon Terry (both Free the Data steering committee members!), who come from non-traditional scientific backgrounds but have still made outstanding contributions to our understanding of human health and disease. Jack Andraka, the winner of the 2012 Intel Science Fair, used open access information to learn about cancer detection methods and develop a novel pancreatic cancer test. Sharon Terry, President and CEO of Genetic Alliance and founder of PXE International, has gone from knowing next to nothing about pseudoxanthoma elasticum, or PXE (the genetic condition her two children were diagnosed with in 1994) to being one of the foremost researchers on the subject, working with scientists around the world to isolate the responsible gene and explore new treatments. One of the most exciting things about Open Access, then, really is the “untapped potential of billions”. With the right resources, anyone has the ability to become a scientist and make discoveries about the topics that matter to them. Wondering how you can get involved? Check out some suggestions below! As we mentioned above, one of the most important goals of Open Access Week is to increase awareness on the benefits of Open Access, and getting informed about the movement is a great place to start. Both SPARC and EFF have referenced numerous resources and articles on this topic, from ROARMAP (a handy guide and registry to open access policies at universities), to the How Open Is It? Guide (a guide that will help you evaluate not just whether a journal is open access, but where it lies on a scale of more open to less open), to PubMed Central (where NIH-funded research is made freely available within 12 months of publication in a peer-reviewed journal), and to the Economist’s recent look at the progress of the Open Access movement (“the open-access movement…now looks unstoppable”). There are also many Open Access efforts that enable direct participation from the public, such as the Open Access Button (a student effort that helps connect users to the research they need), or data sharing efforts that enable participants to put information about their health or other topics into the public domain. Free the Data is one such project: by making genetic information and associated phenotypic information freely available to researchers, we aim to change the way we use and view information to benefit research and care. We are working to create an open access database of BRCA mutations for hereditary breast and ovarian cancer researchers everywhere, while placing the power of personal health information and research access into the individual’s hands. To join the movement to bring powerful knowledge within the reach of all, visit www.Free-the-Data.org.

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