ArticleResearch square2025
Return of health research findings in Nigeria-perspective of potential research participants.
Article in Research square, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
Background: Health research in Nigeria, a low- and middle-income country with significant genetic diversity and disease burden, raises ethical challenges regarding the return of individual research findings to participants. Though there is a growing body of literature on participants' perspectives regarding these issues globally, there remains a paucity of empirical evidence emanating from Nigeria. This study explored the perspectives of potential research participants in Nigeria on the return of primary research results (RRs) and incidental findings (IFs), especially from human biological specimen (HBS)-based research. Methods: Using a mixed-methods approach (quantitative and qualitative methods), a cross-sectional survey of 405 urban residents and focus group discussions involving 4 groups (gender/age stratified) with 30 participants were conducted within Enugu metropolis of Nigeria in 2021. The quantitative data was collected using a semi-structured, interviewer-administered questionnaire, and analyzed using Statistical Package for Social Science software program (IBM SPSS v. 20 Inc., Chicago II, USA). Researchers used descriptive statistics (frequencies and percentages) and chi-square tests to find connections between participants' characteristics and their perspective on having research findings returned to them. A p-value of less than 0.05 was considered statistically significant. Manual thematic content analysis was used for the qualitative data. Results: Most respondents (97%) desired the return of individual results, prioritizing actionable findings with clinical utility. Many struggled to distinguish between RRs and IFs, indicating a potential misunderstanding of nature and limitations of different research findings. The study revealed a strong trust in researchers but also highlighted misconceptions about the distinction between health research and healthcare. Preferences for in-person disclosure were driven by concerns over confidentiality. Key barriers included inadequate funding, logistical challenges, and low health literacy. Participants recommended measures such as increased funding, training for researchers, and culturally sensitive policies to address these challenges. Conclusion: The findings underscore strong community demand for the return of individual research results, especially clinically actionable information, but also reveal critical gaps in understanding, resources, and infrastructure. Addressing misconceptions, safeguarding confidentiality, and implementing culturally sensitive, well-funded strategies are essential to ensure ethical and effective return of results in health research.
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