53. ETHICAL CHALLENGES AND OPPORTUNITIES IN NEUROPSYCHIATRIC GENOMICS RESEARCH COMMUNITY ENGAGEMENT IN AFRICA: EXPLORING THE PERSPECTIVES OF AFRICAN RESEARCHERS

Background Neuropsychiatric disorders (NPDs) are common, complex disorders with evidence of underlying genetic causes. Yet research on NPD genetics and genomics are only just gaining momentum in Africa. Notable examples of research in Africa include studies focussing on genetics / genomics and schizophrenia, bipolar disorder, autism, intellectual disability, ADHD and other neurodevelopmental disorders. As a continent with a history of colonialism and the richest genetic diversity, progress of African-led NPD genetics research brings increasing hope for African communities affected by these disorders. While there is growing progress with NPD genetics and genomics research in Africa, the ethical, legal, social, cultural and policy implications of the research are underexplored. One way to understand the ethical, legal, social, cultural and policy considerations is through community engagement. Community engagement is widely recognised as essential for ethical genomics research, particularly in African contexts where trust, reciprocity and culturally sensitive research practices are important. However, there is limited empirical research on how community engagement is understood and practiced by researchers in NPD genomics research studies in African settings. Methods This study aims to explore how community engagement is understood, translated and practiced by researchers involved in NPD genomics research in Africa and to identify the ethical challenges they encounter as well as how these challenges are addressed.Following a qualitative, exploratory design guided by the interpretivist paradigm, this study will conduct 12-16 semi-structured in-depth interviews with purposefully selected NPD genomics researchers representing Eastern, Western, Southern and Northern regions of Africa. The selected researchers will be recruited from the Psychiatric Genomics Consortium Africa network, which has over 250 members that span across 38 African and African diaspora countries. Results Data will be analysed using thematic analysis, following the six-phase approach described by Braun and Clarke (2006) and will be undertaken through ATLAS.ti software. The Community-Based Participatory Research (CBPR) framework will be used to guide the interpretation of the findings. The findings of this work will contribute empirical evidence that aims to improve community engagement practices and provide contextually relevant guidance on the ethical, legal, social, cultural and policy implications which could inform more inclusive psychiatric genomics research across Africa and beyond. Discussion None

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Publication Details

Journal
European Neuropsychopharmacology
Published
2026-09-21
DOI
https://doi.org/10.1016/j.euroneuro.2026.113080
Primary Topic
Ethics in Clinical Research
Type
article
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53. ETHICAL CHALLENGES AND OPPORTUNITIES IN NEUROPSYCHIATRIC GENOMICS RESEARCH COMMUNITY ENGAGEMENT IN AFRICA: EXPLORING THE PERSPECTIVES OF AFRICAN RESEARCHERS

Olivia Matshabane, Yomelela Golimpi
European Neuropsychopharmacology
Ethics in Clinical Research
article

53. ETHICAL CHALLENGES AND OPPORTUNITIES IN NEUROPSYCHIATRIC GENOMICS RESEARCH COMMUNITY ENGAGEMENT IN AFRICA: EXPLORING THE PERSPECTIVES OF AFRICAN RESEARCHERS

Olivia Matshabane, Yomelela Golimpi
article en

Abstract

Background Neuropsychiatric disorders (NPDs) are common, complex disorders with evidence of underlying genetic causes. Yet research on NPD genetics and genomics are only just gaining momentum in Africa. Notable examples of research in Africa include studies focussing on genetics / genomics and schizophrenia, bipolar disorder, autism, intellectual disability, ADHD and other neurodevelopmental disorders. As a continent with a history of colonialism and the richest genetic diversity, progress of African-led NPD genetics research brings increasing hope for African communities affected by these disorders. While there is growing progress with NPD genetics and genomics research in Africa, the ethical, legal, social, cultural and policy implications of the research are underexplored. One way to understand the ethical, legal, social, cultural and policy considerations is through community engagement. Community engagement is widely recognised as essential for ethical genomics research, particularly in African contexts where trust, reciprocity and culturally sensitive research practices are important. However, there is limited empirical research on how community engagement is understood and practiced by researchers in NPD genomics research studies in African settings. Methods This study aims to explore how community engagement is understood, translated and practiced by researchers involved in NPD genomics research in Africa and to identify the ethical challenges they encounter as well as how these challenges are addressed.Following a qualitative, exploratory design guided by the interpretivist paradigm, this study will conduct 12-16 semi-structured in-depth interviews with purposefully selected NPD genomics researchers representing Eastern, Western, Southern and Northern regions of Africa. The selected researchers will be recruited from the Psychiatric Genomics Consortium Africa network, which has over 250 members that span across 38 African and African diaspora countries. Results Data will be analysed using thematic analysis, following the six-phase approach described by Braun and Clarke (2006) and will be undertaken through ATLAS.ti software. The Community-Based Participatory Research (CBPR) framework will be used to guide the interpretation of the findings. The findings of this work will contribute empirical evidence that aims to improve community engagement practices and provide contextually relevant guidance on the ethical, legal, social, cultural and policy implications which could inform more inclusive psychiatric genomics research across Africa and beyond. Discussion None

European NeuropsychopharmacologyVol. 111
Stellenbosch University (ZA)
Openalex Percentile: Top 8%
Ethics in Clinical Research
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