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Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya
- V. Marsh, D. Kamuya, Albert M Mlamba, T. Williams, S. Molyneux
- Medicine, PsychologyBMC medical ethics
- 15 July 2010
Community 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, drawing on experiences around community engagement and informed consent during a genetic cohort study in Kenya.
Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya
‘All her children are born that way’: gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya
Mothers of children with SCD were particularly vulnerable to stigmatisation within families, with underlying structural influences that suggest these findings may apply to other similar settings in Africa, and have relevance for other genetic conditions.
Ethical considerations in Controlled Human Malaria Infection studies in low resource settings: Experiences and perceptions of study participants in a malaria Challenge study in Kenya.
This study highlights some of the ethical issues that could emerge in Low-Middle Income Countries settings, emphasizing the heavy responsibility placed on research review and regulatory systems, researchers and funders, as well as the importance of carefully tailored community engagement and consent processes.
ENGAGING COMMUNITIES TO STRENGTHEN RESEARCH ETHICS IN LOW-INCOME SETTINGS: SELECTION AND PERCEPTIONS OF MEMBERS OF A NETWORK OF REPRESENTATIVES IN COASTAL KENYA
- D. Kamuya, V. Marsh, Francis Kombe, P. Geissler, S. Molyneux
- SociologyDeveloping world bioethics
- 21 February 2013
This paper describes a network of community members linked to a large multi-disciplinary research programme on the Kenyan Coast and concludes that this evolving network is a potentially valuable way of strengthening interactions between a research institution and a local geographic community.
Beyond open data: realising the health benefits of sharing data
Accessible data are not enough. We need to invest in systems that make the information useful, say Elizabeth Pisani and colleagues
Involving Research Stakeholders in Developing Policy on Sharing Public Health Research Data in Kenya
- I. Jao, Francis Kazungu Kombe, V. Marsh
- Medicine, Political ScienceJournal of empirical research on human research…
- 1 July 2015
Institutional trust-building processes seen as central to perceptions of fairness in sharing research data in this setting are discussed, including forms of community involvement, individual prior awareness and agreement to data sharing, independence and accountability of governance mechanisms, and operating under a national framework.
Public/community engagement in health research with men who have sex with men in sub-Saharan Africa: challenges and opportunities
This paper contextualises, describes and interprets the discussions and outcomes of an international meeting held at the Kenya Medical Research Institute-Wellcome Trust in Kilifi, Kenya, in November 2013 to critically examine the experiences with community engagement for studies involving men who have sex with men.
“The One Who Chases You Away Does Not Tell You Go”: Silent Refusals and Complex Power Relations in Research Consent Processes in Coastal Kenya
The concept of ‘silent refusals’, a situation where it is not clear whether potential participants want to join studies or those in studies want to withdraw from research, is explored, with important implications for consent processes and broader research ethics practice.
EVOLVING FRIENDSHIPS AND SHIFTING ETHICAL DILEMMAS: FIELDWORKERS' EXPERIENCES IN A SHORT TERM COMMUNITY BASED STUDY IN KENYA
- D. Kamuya, S. Theobald, P. Munywoki, D. Koech, W. Geissler, S. Molyneux
- PsychologyDeveloping world bioethics
- 21 February 2013
It is argued that appropriate support for field workers is a key requirement to strengthen ethical research practice and for the long term sustainability of research programmes.