Introduction

Data sharing is increasingly mandated by health research funders and publishers. Rationales for sharing data include maximising the cost-effectiveness and utility of primary datasets, minimising duplications and improving the transparency of research with the ultimate aim of progressing science and improving human health. However, despite the many mandates, the volume of data shared and reused remain low. The reasons for the poor uptake to date need to be better understood. Many have cautioned that there are also potential harms in data sharing, such as inadequate consent procedures, breaches of participant confidentiality, group harms of discrimination and stigmatization, and the risk of misinterpretation and wasted resources when data are shared only as a "tick-box exercise" without the necessary accompanying information for data to be accurately interpreted. Data sharing and re-use is particularly limited among researchers in low-resource settings. This has been attributed to lack of capacity in data science as well as limited funding and lack of protected time for research. In addition, many institutions have not yet established policies and infrastructure to undertake data managament and facilitating data sharing.

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. What is equitable sharing and how equitable do we need to be? In this context, we present three case studies and their issues related to equity and suggest ways forward. These case studies were discussed at the 2018 Global Forum for Bioethics in Research in Stellenbosch, South Africa focusing on the theme "The ethics of data sharing and biobanking in health research".