Engaging Communities to Strengthen Research Ethics in Low-Income Settings: Selection and Perceptions of Members of a Network of Representatives in Coastal Kenya

Developing World Bioethics

Volumn 13, Issue 1, 2013, Pages 10-20

  Kamuya, Dorcas M ^a   Marsh, Vicki ^a   Kombe, Francis K ^a   Geissler, P Wenzel ^c   Molyneux, Sassy C ^b  

^a KENYA MEDICAL RESEARCH INSTITUTE   (Kenya)

^b UNIVERSITY OF OXFORD   (United Kingdom)

^c LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE   (United Kingdom)

Author keywords

Community engagement; Community network; Developing countries; Representation; Research ethics

Indexed keywords

ADOLESCENT; ADULT; AGED; ARTICLE; CLINICAL TRIAL (TOPIC); CONFLICT; CONFLICT OF INTEREST; ETHICS; FEMALE; HUMAN; HUMAN RELATION; INFORMED CONSENT; INTERDISCIPLINARY COMMUNICATION; INTERNATIONAL COOPERATION; KENYA; MALE; MIDDLE AGED; MORALITY; PARTICIPATORY RESEARCH; PERCEPTION; PERSONNEL; POVERTY; SOCIAL ENVIRONMENT; STANDARD;

ADOLESCENT; ADULT; AGED; CLINICAL TRIALS AS TOPIC; COMMUNITY-BASED PARTICIPATORY RESEARCH; CONFLICT (PSYCHOLOGY); CONFLICT OF INTEREST; FEMALE; HUMANS; INFORMED CONSENT; INTERDISCIPLINARY COMMUNICATION; INTERNATIONAL COOPERATION; KENYA; MALE; MIDDLE AGED; MORAL OBLIGATIONS; POVERTY; RESEARCH PERSONNEL; RESEARCHER-SUBJECT RELATIONS; SOCIAL ENVIRONMENT; SOCIAL PERCEPTION;

EID: 84875809284     PISSN: 14718731     EISSN: 14718847     Source Type: Journal    
DOI: 10.1111/dewb.12014     Document Type: Article

References (31)

1. D.A. Diallo, etal. Community permission for medical research in developing countries. Clin Infect Dis 2005; 41: 255-259, O.K. Doumbo . Global voices of science. It takes a village: medical research and ethics in Mali. Science 2005; 307: 679-681.
2. C. Weijer & E.J. Emanuel . Ethics. Protecting communities in biomedical research. Science 2000; 289: 1142-1144, L.W. Green & S.L. Mercer . Can public health researchers and agencies reconcile the push from funding bodies and the pull from communities? Am J Public Health 2001; 91: 1926-1929.
3. A. Nyika . Ethical and practical challenges surrounding genetic and genomic research in developing countries. Acta Trop 2009; 112 Suppl 1: S21-S31, F. Tekola, etal. Impact of social stigma on the process of obtaining informed consent for genetic research on podoconiosis: a qualitative study. BMC Med Ethics 2009; 10: 13.
4. R.R. Sharp & M.W. Foster . Grappling with groups: protecting collective interests in biomedical research. J Med Philos 2007; 32: 321-327, L.F. Ross
5. Degrees of human subjects protections in community-engaged research. Sci Transl Med 2010; 2: 45cm23, , Nine key functions for a human subjects protection program for community-engaged research: points to consider. J Empir Res Hum Res Ethics 2010; 5: 33-47
6. Nine key functions for a human subjects protection program for community-engaged research: points to consider. J Empir Res Hum Res Ethics
7. R.P. Strauss, etal. The role of community advisory boards: involving communities in the informed consent process. Am J Public Health 2001; 91: 1938-1943.
8. P. Reddy, etal. The role of community advisory boards in health research: Divergent views in the South African experience. SAHARA J 2010; 7: 2-8.
9. K. Shubis, etal. Challenges of establishing a Community Advisory Board (CAB) in a low-income, low-resource setting: experiences from Bagamoyo, Tanzania. Health Res Policy Syst 2009; 7: 16
10. D.F. Ragin, etal. Defining the 'community' in community consultation for emergency research: findings from the community VOICES study. Soc Sci Med 2008; 66: 1379-1392.
11. V.M. Marsh, etal. Working with Concepts: The Role of Community in International Collaborative Biomedical Research. Public Health Ethics 2011; 4: 26-39.
12. C. Molyneux, etal. The role of community-based organizations in household ability to pay for health care in Kilifi District, Kenya. Health Policy Plan 2007; 22: 381-392.
13. V. Marsh, etal. Beginning community engagement at a busy biomedical research programme: experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya. Soc Sci Med 2008; 67: 721-733.
14. CGMRC - Centre for Geographic Medicine Research Centre.
15. J.A. Scott, etal. Profile: The Kilifi Health and Demographic Surveillance System (KHDSS). Int J Epidemiol 2012.
16. CBOs included formally registered groups such as land-buying groups, farmer groups, development groups, as well as small scale informal groups such as merry-go-rounds (cash transfer groups), small traders, and youth groups. We identified 569 groups, one-third of which were unregistered.
17. KCR members were reimbursed for expenses, and were not paid a stipend for being a KCR member.
18. Dedicated team of 10 KEMRI employees backstopped by 2 senior researchers; trained on facilitation and communication skills and research ethics. Their primary responsibility is coordinating programme-wide and study-specific community engagement activities.
19. Exchange rate at the time: $1=Ksh. 75 in 2007.
20. V.M. Marsh, etal. Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya. BMC Med Ethics 2010; 11: 13.
21. S. Molyneux, etal. Community members employed on research projects face crucial, often under-recognized, ethical dilemmas. Am J Bioeth 2010; 10: 24-26.
22. C.S. Molyneux, etal. Understanding of informed consent in a low-income setting: three case studies from the Kenyan Coast. Soc Sci Med 2004; 59: 2547-2559
23. P.W. Geissler & R. Pool . Editorial: Popular concerns about medical research projects in sub-Saharan Africa - a critical voice in debates about medical research ethics. Trop Med Int Health 2006; 11: 975-982
24. C. Gikonyo, etal. Taking social relationships seriously: lessons learned from the informed consent practices of a vaccine trial on the Kenyan Coast. Soc Sci Med 2008; 67: 708-720.
25. D.M. Kamuya, etal. Evolving Friendships and Shifting Ethical Dilemmas: Fieldworkers' Experiences in a Short Term Community Based Study. Developing World Bioethics 2012; in press.
26. A. Davies, etal. Seeing 'With my Own Eyes': Strengthening Interactions between Researchers and Schools. IDS Bulletin 2012; 43: 61-67.
27. Institutional community engagement guidelines are available from the authors, as are consent templates and consent SOP guidelines. The latter have drawn on ideas and concerns raised by KCRs as well as other community engagement activities at the programme.
28. S. Molyneux, etal. Benefits and payments for research participants: Experiences and views from a research centre on the Kenyan coast. BMC Med Ethics 2012; 13: 13.
29. C. Rotimi, etal. Community engagement and informed consent in the International HapMap project. Community Genet 2007; 10: 186-198.
30. C. Molyneux, etal. The role of community-based organizations in household ability to pay for health care in Kilifi District, Kenya. Health Policy Plan 2007; 22: 381-392.
31. P.W. Geissler . 'Transport to Where?'. Journal of Cultural Economy 2011; 4: 45-64.