Exploring perspectives of research ethics committee members on the governance of big data in sub-Saharan Africa

Abstract

Interest in the governance of big data is growing exponentially. However, finding the right balance between making large volumes of data accessible, and safeguarding privacy, preventing data misuse, determining authorship and protecting intellectual property remain challenging. In sub-Saharan Africa (SSA), research ethics committees (RECs) play an important role in reviewing data-intense research protocols. However, this regulatory role must be embedded in a context of robust governance. There is currently a paucity of published literature on how big data are regulated in SSA and if the capacity to review protocols is sufficient. The aim of this study was to provide a broad overview of REC members’ awareness and perceptions of big data governance in SSA. A descriptive cross-sectional survey was conducted from April to July 2022. We invited 300 REC members to participate in our online survey via Research Electronic Data Capture (REDCap). A total of 140 REC members, representing 34 SSA countries, completed the online survey. Awareness of data governance laws, policies and guidelines was variable across the subcontinent. A quarter of respondents (25%) indicated that national regulations on the transborder flow of research data are inadequate. Institutional policies on research data protection were also regarded as being inadequate. Most respondents (64%) believed that they lacked experience in reviewing data-intense protocols. Data governance and regulation in SSA need to be strengthened at both national and institutional levels. There is a strong need for capacity development in the review of data-intense research protocols on the subcontinent.

Research ethics and artificial intelligence for global health: perspectives from the global forum on bioethics in research

“…Rahimzadeh et al (2023) outlined how RECs in the United States are under-prepared to align with recent federal policy requiring that RECs review data sharing and management plans with attention to the unique ethical issues raised in AI research for health [13]. Similar research in South Africa identified variability in understanding of existing regulations and ethical issues associated with health-related big data sharing and management among research ethics committee members [14,15]. The effort to address harms accruing to groups or communities as opposed to individuals whose data are included in AI research has also been identified as a unique challenge for RECs [16,17].…”

Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa

“…Their main purpose of protecting the dignity and rights of research participants is to foster social trust in research as well as assess its social value [ 9 ]. RECs play a pivotal role in the review and governance of all research including data-intensive research [ 10 , 11 ]. However, traditional ethics oversight mechanisms and practices may not be well placed to guarantee adequate oversight of data-intensive research given the unique and novel challenges presented by digital technologies and artificial intelligence (AI) [ 12 , 13 ].…”

“…In our previous study, we conducted the first empirical survey in SSA in which awareness and perspectives of REC members were explored specifically relating to the review of data-intense research protocols and data governance in SSA [ 11 ]. At the time, it was unclear how REC members navigate governance structures and processes and review such protocols.…”