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A Special issue of the Journal of Empirical Research on Human Research Ethics, 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 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 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.”
The issue includes the following 13 articles:
- Michael Parker & Susan Bull “Sharing Public Health Research Data: Toward the Development of Ethical Data-Sharing Practice in Low- and Middle-Income Settings”
- Susan Bull, Nia Roberts & Michael Parker “Views of Ethical Best Practices in Sharing Individual-Level Data From Medical and Public Health Research: A Systematic Scoping Review”
- Ketaki Hate, Sanna Meherally. Neena Shah More, Anuja Jayaraman, Susan Bull, Michael Parker & David Osrin “Sweat, Skepticism, and Uncharted Territory: A Qualitative Study of Opinions on Data Sharing Among Public Health Researchers and Research Participants in Mumbai, India”
- Phaik Yeong Cheah, Decha Tangseefa, Aimatcha Somsaman, Tri Chunsuttiwat, François Nosten, Nicholas P. J. Day, Susan Bull and Michael Parker “Perceived Benefits, Harms, and Views About How to Share Data Responsibly: A Qualitative Study of Experiences With and Attitudes Toward Data Sharing Among Research Staff and Community Representatives in Thailand”
- Spencer G. Denny, Blessing Silaigwana, Douglas Wassenaar, Susan Bull and Michael Parker“Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholders”
- Susan Bull, Phaik Yeong Cheah, Spencer Denny, Irene Jao, Vicki Marsh, Laura Merson, Neena Shah More, Le Nguyen Thanh Nhan, David Osrin, Decha Tangseefa, Douglas Wassenaar and Michael Parker “Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings”
- David Carr and Katherine Littler “Sharing Research Data to Improve Public Health: A Funder Perspective”
- George G. C. Alter and Mary Vardigan “Addressing Global Data Sharing Challenges”
- Herbst, K., Juvekar, S., Bhattacharjee, T., Bangha, M., Patharia, N., Tei, T., and Sankoh, “The INDEPTH Data Repository: An International Resource for Longitudinal Population and Health Data From Health and Demographic Surveillance Systems”
- Harris, T. L. and Jessica J. M. Wyndham “Data Rights and Responsibilities: A Human Rights Perspective on Data Sharing”
- Lucia Lötter and Christa van Zyl “A Reflection on a Data Curation Journey”