Sharing individual-level data in low and middle income settings – special issue and online eLearning course
A Special issue of the Journal of Empirical Research on Human Research Ethics http://jre.sagepub.com/content/10/3 , launched today, focuses on the ethical implications of sharing health research data in low and middle income settings. To accompany the special issue, Bioethics, Research Ethics & Review has launched an online resource (https://bioethicsresearchreview.tghn.org/research-data-sharing/) which brings together resources about ethical best practices for data sharing, policies and processes for data curation and data sharing, and links to repositories for data sharing. The online resource includes a new eLearning Course (https://globalhealthtrainingcentre.tghn.org/ethics-and-best-practices-sharing-individual-level-data-clinical-and-public-health-research/) on Ethics and Best Practices in Sharing Individual-level Research Data. The special issue, online resource and eLearning course are all free to download and use, and your contributions to the online resource are welcomed.
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?
The special issue of JERHRE publishes research funded by the Wellcome Trust, on behalf of the Public Health Research Data Forum. The special issue 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.
“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.”
Author: Dr Susan Bull
The Global Health Network