Navigating Gaps in Governance and Capacity for Equitable and Responsible Data Sharing in Health Research in Sub-Saharan Africa: A Literature Review

Sharing data from diverse sources is essential for addressing grand challenges in global health. The COVID-19 pandemic, which affected populations on a global scale, demonstrated the benefits of data sharing but also exposed some challenges that stakeholders face, such as lack of data interoperability, accessibility and guiding principles for ensuring equitable and responsible sharing when data are distributed across multiple organisations, institutions and ecosystems in multisite studies. In sub-Saharan Africa (SSA), these challenges are compounded by fragmented regulatory frameworks. By examining the legal and regulatory frameworks for equitable health data sharing in selected SSA countries, namely Kenya, Nigeria, Rwanda and South Africa, this review aims to identify good practices and challenges in the health data ecosystem. It then proposes recommendations that can be used to improve the legal and regulatory frameworks for health research in the region. The review also highlights lessons that may be learned from the selected country case studies by countries seeking to reform their data policy and privacy governance frameworks.