Skip to content
Home
About Us
Resources
Profiles Metrics
Authors Directory
Institutions Directory
Top Authors
Top Institutions
Top Sponsors
AI Digest
Contact Us
Menu
Home
About Us
Resources
Profiles Metrics
Authors Directory
Institutions Directory
Top Authors
Top Institutions
Top Sponsors
AI Digest
Contact Us
Home
About Us
Resources
Profiles Metrics
Authors Directory
Institutions Directory
Top Authors
Top Institutions
Top Sponsors
AI Digest
Contact Us
Menu
Home
About Us
Resources
Profiles Metrics
Authors Directory
Institutions Directory
Top Authors
Top Institutions
Top Sponsors
AI Digest
Contact Us
Publication Details
AFRICAN RESEARCH NEXUS
SHINING A SPOTLIGHT ON AFRICAN RESEARCH
medicine
Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya
BMC Medical Ethics, Volume 11, No. 1, Article 13, Year 2010
Notification
URL copied to clipboard!
Description
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. © 2010 Marsh et al; licensee BioMed Central Ltd.
Authors & Co-Authors
Marsh, Vicki M.
Kenya, Nairobi
Wellcome Trust Research Laboratories Nairobi
United Kingdom, Oxford
Nuffield Department of Medicine
Kamuya, Dorcas Mwikali
Kenya, Nairobi
Wellcome Trust Research Laboratories Nairobi
Mlamba, Albert M.
Kenya, Nairobi
Wellcome Trust Research Laboratories Nairobi
Williams, Thomas Neil
Kenya, Nairobi
Wellcome Trust Research Laboratories Nairobi
United Kingdom, Oxford
Nuffield Department of Medicine
Ghana, Accra
Indepth Network
Molyneux, Sassy C.
Kenya, Nairobi
Wellcome Trust Research Laboratories Nairobi
United Kingdom, Oxford
Nuffield Department of Medicine
Statistics
Citations: 86
Authors: 5
Affiliations: 3
Identifiers
Doi:
10.1186/1472-6939-11-13
e-ISSN:
14726939
Research Areas
Genetics And Genomics
Maternal And Child Health
Study Design
Cohort Study
Study Approach
Qualitative
Quantitative
Study Locations
Kenya