This appears to be one of a series of papers and workshops linked to KEMRI which were written between 2010 and 2103. They all focus on the value of community engagement to the securing of informed consent and this, like several of the others, goes into some detail about the discussions held with community groups and leaders. In that these discussions appear to have had a function of introducing community members to the concepts and values of biomedical research, as well as providing evidence for these studies and given that some time has now passed, it would be interesting to pursue if and how the communities concerned had opportunities to continue the discussions after the research was published.
Background: 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.
Methods: 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.
Results: Field 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.
Conclusions: 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. 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.