Paper Published
Date Published: 18th December 2025
Journal: JMIR Research Protocols
Title: Knowledge and Recommendations of Stakeholders Regarding Ethical Oversight of Data Science Health Research: Protocol for a Qualitative Study
Link to article: https://pmc.ncbi.nlm.nih.gov/articles/PMC12757715/
Knowledge and Recommendations of Stakeholders Regarding Ethical Oversight of Data Science Health Research: Protocol for a Qualitative Study
This protocol describes a comprehensive qualitative research initiative designed to explore stakeholder perspectives on the ethical oversight of data science health research in Nigeria. The research addresses a critical gap in understanding how diverse stakeholders—including health researchers, ethics committee members, data scientists, and policymakers—perceive and experience the ethical, legal, and social implications of data science health research in resource-limited settings.
The study employed Key Informant Interviews with 65 stakeholders representing four major groups across Nigeria’s data science health research ecosystem. The research is grounded in multiple theoretical frameworks including classical research ethics principles, the ELSI framework, decolonial and postcolonial theory, and stakeholder engagement theory, enabling a comprehensive exploration of ethical challenges specific to the Nigerian context. The study examines stakeholder knowledge and awareness of existing policies and regulations, effectiveness of current oversight mechanisms, experiences addressing ethical challenges including consent and algorithmic bias, components of an ideal oversight framework, and roles of various stakeholders in developing and implementing ethical guidelines.
Preliminary findings reveal a striking deficit in specialized training on data science health research ethics, with only 12% of participants having received relevant training, yet 92% acknowledging the urgent need for such education. The study will generate stakeholder-informed recommendations for ethical oversight that address issues of broad consent, data ownership, benefit-sharing, and protection of data donors in resource-limited settings, informing both Nigerian policy development and global discourse on data science health research ethics.
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