Global Data Sharing and Its Implications for World Pandemics of Infectious Diseases

Researchers target the spread of diseases such as HIV, SARS, and Ebola.

Researchers target the spread of diseases such as HIV, SARS, and Ebola.

With global concerns about the possible pandemics of diseases such as HIV, SARS, and Ebola, data sharing techniques are of growing importance to scientists worldwide. It is for this reason that the Journal of Empirical Research on Human Research Ethics (JERHRE) published a set of guidelines, protocols, models, and new resources to improve data sharing across the globe.

The journal examined the advantages and disadvantages of sharing data in low and middle-income settings, as well as the challenges faced by researchers in countries such as India, Kenya, and Vietnam.

“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.”

Research funded by the Wellcome Trust and published in JERHRE details the views of researchers and gatekeepers of biomedical research on the possibility of expanding the sharing of their individual-level biomedical research data in 5 developing countries, including India, Kenya, South Africa, Thailand, and Vietnam.

The research findings indicated various beliefs from researchers around the globe. In India, concerns for data sharing were centered on 3 themes: acknowledgement 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 clear 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, researchers state that trust-building practices such as prior awareness and consent are vital to the promotion of data-sharing. Data-sharing was generally seen as something positive among Thailand researchers who believed that data-sharing was a means to contribute to scientific progress, to higher-quality analysis, better use of resources, greater accountability and more outputs.

South African researchers demonstrated a commitment to promoting the access of data despite the absence of national guidance and regulation; however, views about the possible harms and benefits of data sharing were disparate among researchers in this area.

Among the researchers observed, it could be concluded that they had very limited experience sharing individual-level health research data and even senior researchers had little experience sharing data with secondary researchers not known to them. To support data-sharing, the study authors developed an open access online resource, which included a free online course, focusing on ethics and best practices in sharing individual-level data in low and middle-income settings.

“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.”