Academic publisher SAGE has announced that a new special issue of its Journal of Empirical Research on Human Research Ethics (JERHRE) presents guidelines, protocols, models, and new resources to improve data sharing across the globe.
With the globalisation 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? This 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 that among researchers in Mumbai, India, concerns for data sharing were centered on three themes: acknowledgment of data producers, skepticism about the process of sharing, and the fact that the terrain of data sharing was essentially uncharted and confusing (Hate et al.); in Vietnam, it was recognized that there is a need to ensure that the rights and interests of participants, communities, and primary researchers are respected through transparent and accountable data-sharing processes (Merson et al.); in Kenya, trust-building practices such as prior awareness and consent are crucial to promoting data sharing (Jao et al.); in Thailand, data sharing was generally seen as something positive: a means to contribute to scientific progress, to higher-quality analysis, better use of resources, greater accountability, and more outputs (Cheah et al.); Commitment to promote access to data is evident within South Africa's public research sector, despite the absence of national guidance and regulation. However, disparate views emerged among researchers about the possible harms and benefits of data sharing (Denny et al.); and challenges raised by sharing individual-level data from low and middle-income settings can differ in important and morally significant ways from those arising in high-income settings (Parker and Bull).
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).
The Journal of Empirical Research on Human Research Ethics (JERHRE) publishes empirical research and reviews of empirical literature on human research ethics. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics.
Brought to you by Scope e-Knowledge Center, a world-leading provider of abstraction, indexing, entity extraction and knowledge organisation models (Taxonomies, Thesauri and Ontologies).
