A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Rachel Vreeman, Eunice Kamaara, Allan Kamanda, David Ayuku, Winstone Nyandiko, Lukoye Atwoli, Samuel Ayaya, Peter Gisore, Michael Scanlon & Paula Braitstein
BMC Medical Ethics 13 (1):23- (2012)
Background International collaborators face challenges in the design and implementation of ethical biomedical research. Evaluating community understanding of research and processes like informed consent may enable researchers to better protect research participants in a particular setting; however, there exist few studies examining community perspectives in health research, particularly in resource-limited settings, or strategies for engaging the community in research processes. Our goal was to inform ethical research practice in a biomedical research setting in western Kenya and similar resource-limited settings. Methods We sought to use mabaraza , traditional East African community assemblies, in a qualitative study to understand community perspectives on biomedical research and informed consent within a collaborative, multinational research network in western Kenya. Analyses included manual, progressive coding of transcripts from mabaraza to identify emerging central concepts. Results Our findings from two mabaraza with 108 community members revealed that, while participants understood some principles of biomedical research, they emphasized perceived benefits from participation in research over potential risks. Many community members equated health research with HIV testing or care, which may be explained in part by the setting of this particular study. In addition to valuing informed consent as understanding and accepting a role in research activities, participants endorsed an increased role for the community in making decisions about research participation, especially in the case of children, through a process of community consent. Conclusions Our study suggests that international biomedical research must account for community understanding of research and informed consent, particularly when involving children. Moreover, traditional community forums, such as mabaraza in East Africa, can be used effectively to gather these data and may serve as a forum to further engage communities in community consent and other aspects of research
|Keywords||Community-based research Sub-Saharan Africa Ethics Informed consent Kenya|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
Dianne Quigley (2015). Promoting Human Subjects Training for Place-Based Communities and Cultural Groups in Environmental Research: Curriculum Approaches for Graduate Student/Faculty Training. Science and Engineering Ethics 21 (1):209-226.
Marion Kalabuanga, Raffaella Ravinetto, Vivi Maketa, Hypolite Muhindo Mavoko, Blaise Fungula, Raquel Inocêncio da Luz, Jean‐Pierre Van Geertruyden & Pascal Lutumba (2015). The Challenges of Research Informed Consent in Socio‐Economically Vulnerable Populations: A Viewpoint From the Democratic Republic of Congo. Developing World Bioethics 15 (3):n/a-n/a.
Similar books and articles
Cletus T. Andoh (2008). Critical Issues on Informed Consent in Africa. Poiesis and Praxis 6 (1-2):109-123.
Colleen Reid & Elana Brief (2009). Confronting Condescending Ethics: How Community-Based Research Challenges Traditional Approaches to Consent, Confidentiality, and Capacity. [REVIEW] Journal of Academic Ethics 7 (1-2):75-85.
Pauline E. Osamor & Nancy Kass (2012). Decision-Making and Motivation to Participate in Biomedical Research in Southwest Nigeria. Developing World Bioethics 12 (2):87-95.
V. M. Marsh, D. K. Kamuya, M. J. Parker & C. S. Molyneux (2011). Working with Concepts: The Role of Community in International Collaborative Biomedical Research. Public Health Ethics 4 (1):26-39.
Oonagh Corrigan (ed.) (2009). The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine. Oxford University Press.
Piotr S. Iwanowski (2007). Informed Consent Procedure for Clinical Trials in Emergency Settings: The Polish Perspective. Science and Engineering Ethics 13 (3):333-336.
Vivien Runnels, Elizabeth Hay, Elyse Sevigny & Paddi O’Hara (2009). The Ethics of Conducting Community-Engaged Homelessness Research. Journal of Academic Ethics 7 (1-2):57-68.
Michelle H. Biros (2007). Research Without Consent: Exception From and Waiver of Informed Consent in Resuscitation Research. Science and Engineering Ethics 13 (3):361-369.
Benedetto Vitiello (2008). Effectively Obtaining Informed Consent for Child and Adolescent Participation in Mental Health Research. Ethics and Behavior 18 (2 & 3):182 – 198.
Brian Schrag, Latisha Love-Gregory, Karen M. T. Muskavitch & Jennifer McCafferty (2003). Forbidden Knowledge. Science and Engineering Ethics 9 (3):409-418.
James R. P. Ogloff & Randy K. Otto (1991). Are Research Participants Truly Informed? Readability of Informed Consent Forms Used in Research. Ethics and Behavior 1 (4):239 – 252.
Janet L. Brody, John P. Cluck & Alfredo S. Aragon (1997). Participants' Understanding of the Process of Psychological Research: Informed Consent. Ethics and Behavior 7 (4):285 – 298.
Vibian Angwenyi, Dorcas Kamuya, Dorothy Mwachiro, Vicki Marsh, Patricia Njuguna & Sassy Molyneux (2013). Working with Community Health Workers as 'Volunteers' in a Vaccine Trial: Practical and Ethical Experiences and Implications. Developing World Bioethics 13 (1):38-47.
David C. Thomasma (2000). A Model of Community Substituted Consent for Research on the Vulnerable. Medicine, Health Care and Philosophy 3 (1):47-57.
Added to index2012-09-26
Total downloads2 ( #553,718 of 1,726,249 )
Recent downloads (6 months)1 ( #369,877 of 1,726,249 )
How can I increase my downloads?