ArticleBMC medical ethics2010
Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.
Article in BMC medical ethics, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 62 papers, 2 of them syntheses that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
62 citing papers in PubMed, 2 syntheses or guidelines pooled it, 96 citations in OpenAlex.
- Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.BMC medical ethics · 2025Pooled it
- Recruitment of Yoruba families from Nigeria for genetic research: experience from a multisite keloid study.BMC medical ethics · 2014Pooled it
- Enhancing the ethical conduct of a longitudinal cluster-randomized trial of psychosocial stimulation intervention for children with complicated severe acute malnutrition through Rapid Ethical Assessment: a qualitative study.BMC medical ethics · 2021Trial
- Trial
- Community perceptions, trust, and experiences of malaria clinical research and participation in rural Cambodia.Tropical medicine and health · 2026Article
- Decolonisation and Self-Regulation as Alternative Paths to Data Science Health Research Governance in Africa.Wellcome open research · 2025Article
- Community engagement conduct for genetics and genomics research: a qualitative study of the experiences and perspectives of key stakeholders in Uganda.BMC medical ethics · 2024Article
- Understanding communication in community engagement for maternal and newborn health programmes in low- and middle-income countries: a realist review.Health policy and planning · 2023Article
- Mistrust: Community engagement in global health research in coastal Kenya.Social studies of science · 2023Article
- Social innovation in health and community-driven engagement as a key strategy for addressing COVID-19 crisis challenges: insights and reflections from the multicultural society of Iran.Frontiers in public health · 2023Review
- Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.AJOB empirical bioethics · 2023Article
- A realist review protocol on communications for community engagement in maternal and newborn health programmes in low- and middle-income countries.Systematic reviews · 2022Article
- Review
- Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study.Research ethics · 2022Article
- Co-developing a common glossary with stakeholders for engagement on new genetic approaches for malaria control in a local African setting.Malaria journal · 2021Article
- Lay persons' perception of the requirements for research in emergency obstetric and newborn care.BMC medical ethics · 2021Article
- Community-structures that facilitate engagement in health research: Ifakara Health Research Institute-Bagamoyo case study.AAS open research · 2021Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- The reported impact of public involvement in biobanks: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- Caring for Africa's sickle cell children: will we rise to the challenge?BMC medicine · 2020Article
2 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
5 authors at 3 institutions in 3 countries.
Funding
Abstract
backgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' on the ground and the challenges of community consultation.
methodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.
resultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.
conclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study.
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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.