Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.

BMC Medical Ethics
Vicki MarshSassy Molyneux

Abstract

The 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. The 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. Field workers described challenges around misunderstandings ...Continue Reading

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Citations

Mar 23, 2011·BMC Medical Ethics·Jantina de VriesMichael Parker
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Methods Mentioned

BETA
genotyping

Software Mentioned

Kilifi

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