ArticleBMC medical ethics2012
A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya.
Article in BMC medical ethics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
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Who cites it
21 citing papers in PubMed, 2 syntheses or guidelines pooled it, 67 citations in OpenAlex.
- Ethical Aspects of Involving Adolescents in HIV Research: A Systematic Review of the Empiric Literature.The Journal of pediatrics · 2023Pooled it
- Stakeholder engagement to inform HIV clinical trials: a systematic review of the evidence.Journal of the International AIDS Society · 2018Pooled it
- Examining study participants' decision-making and ethics-related experiences in a dietary community randomized controlled trial in Malawi.BMC medical ethics · 2021Trial
- Patient, parent and provider perspectives on sickle cell disease genetics research in Jamaica.PLOS global public health · 2026Article
- A qualitative study exploring the experiences of adolescent mothers accessing perinatal services in Rwanda to inform the delivery of trauma- and violence-informed care: a double-edged sword.BMC pregnancy and childbirth · 2025Article
- Decolonisation and Self-Regulation as Alternative Paths to Data Science Health Research Governance in Africa.Wellcome open research · 2025Article
- Article
- Balancing Ethics and Culture: A Scoping Review of Ethico-Cultural and Implementation Challenges of the Individual-Based Consent Model in African Research.Journal of empirical research on human research ethics : JERHRE · 2024Article
- Community engagement in research addressing infectious diseases of poverty in sub-Saharan Africa: A qualitative systematic review.PLOS global public health · 2024Article
- Integrating stakeholder feedback in translational genomics research: an ethnographic analysis of a study protocol's evolution.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Developing the ethical framework of end-stage kidney disease care: from practice to policy.Kidney international supplements · 2020Review
- Survey on Using Ethical Principles in Environmental Field Research with Place-Based Communities.Science and engineering ethics · 2019Article
- Engaging Hmong adults in genomic and pharmacogenomic research: Toward reducing health disparities in genomic knowledge using a community-based participatory research approach.Journal of community genetics · 2017Article
- Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research.Journal of community genetics · 2017Article
- The ethics of mental health survey research in low- and middle- income countries.Global mental health (Cambridge, England) · 2016Article
- Evaluating community engagement in global health research: the need for metrics.BMC medical ethics · 2015Article
- Promoting human subjects training for place-based communities and cultural groups in environmental research: curriculum approaches for graduate student/faculty training.Science and engineering ethics · 2015Article
- Mental health: Tailor informed-consent processes.Nature · 2014Article
- CIHR canadian HIV trials network HIV workshop: ethical research through community participation and strengthening scientific validity.The Pan African medical journal · 2014Article
- Taking stock of the ethical foundations of international health research: pragmatic lessons from the IU-Moi Academic Research Ethics Partnership.Journal of general internal medicine · 2013Article
Corrections and comments
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Authors and funding
10 authors at 4 institutions in 2 countries.
Funding
Abstract
backgroundInternational collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings.
methodsWe sought to use mabaraza, traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from mabaraza to identify emerging central concepts.
resultsOur findings from two mabaraza with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent.
conclusionsOur study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as mabaraza in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.