Developing a Theoretical Framework for Community-Based Participatory Genomics Research in Ethnic Minority Populations in Nigeria

📖 ABSTRACT/OVERVIEW

The participation of African ethnic minority populations in genomic research has historically been limited, raising concerns about equity, representativeness, and the repatriation of genetic research benefits. Existing frameworks for community engagement in genomics, largely derived from North American and European indigenous rights contexts, are insufficiently adapted to the social, cultural, and political realities of Nigerian ethnic minority communities. This dissertation develops an original theoretical framework for community-based participatory genomics (CBPG) research specifically tailored to ethnic minority populations in Nigeria. A grounded theory approach was employed, drawing on 60 in-depth interviews with community leaders, genomic researchers, ethicists, and policy stakeholders across six geopolitical zones. Thematic analysis, supported by NVivo, identified key principles for legitimate community engagement including reciprocal knowledge exchange, governance co-design, benefit-sharing compacts, and tiered community consent models. The resulting CBPG-Nigeria Framework comprises five interrelated theoretical pillars: communal autonomy, relational ethics, epistemic justice, adaptive benefit-sharing, and regulatory interface. The framework was triangulated against existing H3Africa Consortium and African Academy of Sciences governance experience through document analysis. This theoretical contribution addresses a foundational gap in genomics research ethics literature for sub-Saharan Africa, offering a rigorous and actionable framework for equitable genomic research engagement in Nigeria. Keywords: participatory genomics, theoretical framework, ethnic minorities, research ethics, Nigeria

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Departments# Genetics