What constitutes equitable data sharing in global health research? A scoping review of the literature on low-income and middle-income country stakeholders’ perspectives

Abstract

IntroductionDespite growing consensus on the need for equitable data sharing, there has been very limited discussion about what this should entail in practice. As a matter of procedural fairness and epistemic justice, the perspectives of low-income and middle-income country (LMIC) stakeholders must inform concepts of equitable health research data sharing. This paper investigates published perspectives in relation to how equitable data sharing in global health research should be understood.MethodsWe undertook a scoping review (2015 onwards) of the literature on LMIC stakeholders’ experiences and perspectives of data sharing in global health research and thematically analysed the 26 articles included in the review.ResultsWe report LMIC stakeholders’ published views on how current data sharing mandates may exacerbate inequities, what structural changes are required in order to create an environment conducive to equitable data sharing and what should comprise equitable data sharing in global health research.ConclusionsIn light of our findings, we conclude that data sharing under existing mandates to share data (with minimal restrictions) risks perpetuating a neocolonial dynamic. To achieve equitable data sharing, adopting best practices in data sharing is necessary but insufficient. Structural inequalities in global health research must also be addressed. It is thus imperative that the structural changes needed to ensure equitable data sharing are incorporated into the broader dialogue on global health research.

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

“…One interviewee, in particular, emphasised the importance of regulation to foster meaningful knowledge co-creation, whereby local African researchers are equally involved in research collaborations and fairly acknowledged in resulting outputs. This finding concurs with other studies suggesting that most LMICs lack robust regulatory and governance structures [ 17 , 52 – 55 ]. Such insufficiencies in catering to the lawful and safe sharing or cross-border transferring of data caused some interviewees to experience first-hand consequences of neo-colonial science, also known as helicopter research, through exploitative research practices.…”

“…Data sharing is an important part of open science as more institutions, journals, health research funders and governments emphasise the importance of open science and enforce open data policies intended to increase academic influences and promote scientific discovery and development for the greater benefit of the public [ 10 , 25 – 27 ]. Openness in science contributes to greater social impact on the public and our interviewees recognised its several benefits which are consistent with previous research [ 17 , 28 – 30 ]. These benefits encompassed the potential for collaborative endeavours, the capacity to conserve resources, the advancement of knowledge and the increased robustness of study findings which could all potentially inform policy and decision-making [ 17 , 28 – 30 ].…”

“…Openness in science contributes to greater social impact on the public and our interviewees recognised its several benefits which are consistent with previous research [ 17 , 28 – 30 ]. These benefits encompassed the potential for collaborative endeavours, the capacity to conserve resources, the advancement of knowledge and the increased robustness of study findings which could all potentially inform policy and decision-making [ 17 , 28 – 30 ]. Open science is associated with substantial benefits, especially in the context of LMICs in SSA, and requires continued support and safeguards to foster lawful data sharing [ 31 ].…”

“…Such insufficiencies in catering to the lawful and safe sharing or cross-border transferring of data caused some interviewees to experience first-hand consequences of neo-colonial science, also known as helicopter research, through exploitative research practices. This is reflected in the literature and stresses the detrimental effects of inadequate structures [ 17 , 54 – 58 ], which not only threaten to erode trust in science but also, ultimately expose vulnerable research participants to potential harm.…”

“…Ethical governance, in conjunction with national data protection regulation, is necessary to foster responsible data sharing in data-intensive health research [ 16 ]. In particular, low-income and middle-income countries (LMICs) lack enforceable agreements, leaving researchers vulnerable to exploitation and failing to protect research participants from harm [ 17 – 19 ]. Consequently, agreements such as Data Transfer Agreements (DTA) and Material Transfer Agreements (MTA) are of paramount importance for RECs to scrutinise, ensuring compatibility with the research proposition in terms of informed consent or data transfer and sharing procedures [ 20 ].…”