Equitable data sharing: challenges and suggestions for ways forward
Barnes K., Barnes K., Canario JA., Vernekar S., Goudar S., Espinal R., Merson L., Cheah PY.
Data sharing is increasingly mandated by health research funders and publishers. In the context of data collected in low-resource settings, concerns have been raised regarding inequitable opportunities to engage in secondary use of data between researchers in well-resourced and resource-limited settings. In this context, we present three case studies and their issues related to equity: the multicountry Antenatal Corticosteroid Trial, health research in the Dominican Repulic and the WorldWide Antimalarial Resistance Network. These case studies were discussed at the 2018 Global Forum for Bioethics in Research in South Africa, focussing on the theme “The ethics of data sharing and biobanking in health research”. The case studies provide concrete examples of real challenges such as lack of prior consent for data sharing, potential for misinterpretation of data by secondary users and limited capacity of researchers in low-resource settings to conduct secondary analyses. We conclude by suggesting ways forward. We stress the importance of capacity building and investments in data management and data science skills, and in data sharing platforms supporting poverty-related disease research. In addition, we recommend that there should be incentives to promote data sharing and that research groups and institutions establish their own data sharing policies tailored to their context, data and community while persuing harmonization with existing policies as much as possible. We also think that international guidelines on authorship criteria should be revisited. For new studies, researchers should obtain consent for sharing of participants’ data with secondary users. Lastly we recommend that community and stakeholder engagement be conducted to improve the consent process and identify what might be sensitive data to mitigate any potential harms to data subjects and their communities.