ArticlePloS one2024
Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa.
Article in PloS one, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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The trial behind it
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Context of data sharing practices in collaborative human genomic research in low and middle income countries: A systematic review.PloS one · 2026Pooled it
- Decolonizing genomic data ownership: a qualitative study of legal practices and access in Uganda.BMC medical ethics · 2026Article
- Attitudes and practices of researchers on the sharing of genomic data: a qualitative study in Uganda.BMC medical ethics · 2026Article
- Connecting biospecimens and data: a scoping review-informed conceptual framework for digital infrastructure in biobanking and genomic research in low- and middle-income countries.Frontiers in public health · 2026Article
- Experiences of Health Research Data Sharing Among Researchers in Sub-Saharan Africa: Cross-Sectional Study.JMIR formative research · 2025Article
- "ItResearch ethics · 2025Article
- Private commercial companies sharing health-relevant consumer data with health researchers in sub-Saharan Africa: an ethical exploration.Policy studies (Policy Studies Institute) · 2024Article
- Evaluating research ethics committees in Vietnam and Laos: Results of a validated self-assessment tool.PloS one · 2024Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
backgroundSeveral factors thwart successful data sharing-ambiguous or fragmented regulatory landscapes, conflicting institutional/researcher interests and varying levels of data science-related expertise are among these. Traditional ethics oversight mechanisms and practices may not be well placed to guarantee adequate research oversight given the unique challenges presented by digital technologies and artificial intelligence (AI). Data-intensive research has raised new, contextual ethics and legal challenges that are particularly relevant in an African research setting. Yet, no empirical research has been conducted to explore these challenges. MATERIALS AND
methodsWe explored REC members' views and experiences on data sharing by conducting 20 semi-structured interviews online between June 2022 and February 2023. Using purposive sampling and snowballing, we recruited representatives across sub-Saharan Africa (SSA). We transcribed verbatim and thematically analysed the data with Atlas.ti V22.
resultsThree dominant themes were identified: (i) experiences in reviewing data sharing protocols, (ii) perceptions of data transfer tools and (iii) ethical, legal and social challenges of data sharing. Several sub-themes emerged as: (i.a) frequency of and approaches used in reviewing data sharing protocols, (i.b) practical/technical challenges, (i.c) training, (ii.a) ideal structure of data transfer tools, (ii.b) key elements of data transfer tools, (ii.c) implementation level, (ii.d) key stakeholders in developing and reviewing a data transfer agreement (DTA), (iii.a) confidentiality and anonymity, (iii.b) consent, (iii.c) regulatory frameworks, and (iii.d) stigmatisation and discrimination.
conclusionsOur results indicated variability in REC members' perceptions, suboptimal awareness of the existence of data protection laws and a unanimously expressed need for REC member training. To promote efficient data sharing within and across SSA, guidelines that incorporate ethical, legal and social elements need to be developed in consultation with relevant stakeholders and field experts, along with the training accreditation of REC members in the review of data-intensive protocols.
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Registered trials
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