Improving Global Sharing of Biomedical Research Data

A special issue of the Journal of Empirical Research on Human Research Ethics (JERHRE) presents guidelines, protocols, models, and new resources to improve data sharing across the globe.

The new 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, with a focus on ethical implications of sharing health research data in these low and middle income settings. In contrast with Western countries, the majority of researchers questioned were wary of sharing individual-level health research data due to very limited experience of sharing with secondary researchers.

Reasons for resistance and skepticism about sharing data were varied; 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. 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.

In Kenya, trust-building practices such as prior awareness and consent were deemed crucial to promoting data sharing. 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. And within South Africa's public research sector, commitment to share data was evident, despite the absence of national guidance and regulation, but disparate views emerged among researchers about the possible harms and benefits of data sharing.

“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 Joan E. Sieber, editor-in-chief of JERHRE. “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. Each discipline raises its own set of challenges, risks, and benefits of data sharing, but with ingenuity, the risks can be overcome.”

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.

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JERHRE special issue