With the globalization of biomedical research and growing concerns about possible pandemics of diseases such as HIV, SARS, and Ebola, international data-sharing practices are of growing interest to the biomedical science community. But what are the advantages and disadvantages of sharing data in low and middle-income settings? What challenges stand in the way for researchers in countries such as India, Kenya, and Vietnam? A new special issue of SAGE's Journal of Empirical Research on Human Research Ethics (JERHRE) presents guidelines, protocols, models, and new resources to improve data sharing across the globe.
"Gatekeepers of data in these studies, although positive about the general concept, were skeptical about sharing their own data, not unlike the responses of persons in Western countries who have not shared data," wrote JERHRE Editor-in-Chief Joan E. Sieber. "However, in this issue, we see the emergence of exciting next steps in human data sharing."
A special issue of JERHRE, edited by Susan Bull and Michael Parker from the University of Oxford, publishes research funded by the Wellcome Trust, on behalf of the Public Health Research Data Forum. It outlines the views of researchers and gatekeepers of biomedical research in five developing countries -- India, Kenya, South Africa, Thailand, and Vietnam -- on the possibility of expanding the sharing of their individual-level biomedical research data.
Through interviews, small group discussions, focus groups, and literature reviews, authors of the articles in the special issue found the following:
The concluding paper from the study found that the majority of researchers studied had very limited experience sharing individual-level health research data and that even senior researchers had little experience sharing data with secondary researchers not known to them (Bull et al.). In an effort to support data sharing, the study authors developed an open access online resource, including a free online course, focusing on ethics and best practices in sharing individual-level data in low and middle-income settings. More information on this new resource can be found here.
Five commentaries from independent experts accompany the study results and discuss funders' perspectives (Carr and Littler), global data sharing challenges (Alter and Vardigan), human rights (Harris and Wyndham) and experiences of establishing data sharing repositories in low and middle income settings (Herbst et al., Lotter and van Zyl).
"Data sharing enables researchers worldwide to build on the efforts of others in a cost-effective way. Base-line data will be in place when epidemics strike. The political, scientific, and economic problems of understanding and stopping new diseases will be vastly reduced when an infrastructure and baseline data are readily available to scientists," Sieber wrote. "Each discipline raises its own set of challenges, risks, and benefits of data sharing, but with ingenuity, the risks can be overcome."
The journal's special issue can be found online at: http://jre.sagepub.com/content/10/3.toc
Materials provided by SAGE Publications. Note: Content may be edited for style and length.
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