A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya

BMC Medical Ethics

Research Article

David Ayuku¹  Michael Scanlon²  Rachel Vreeman³  Eunice Kamaara⁴  Allan Kamanda⁵  Peter Gisore⁶  Winstone Nyandiko⁶  Samuel Ayaya⁶  Lukoye Atwoli⁷  Paula Braitstein⁸ 

[1] Department of Behavioural Sciences, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, 30100, Eldoret, Kenya;Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, 46202, Indianapolis, IN, USA;Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, 46202, Indianapolis, IN, USA;USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, 30100, Eldoret, Kenya;Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000, 46202-3012, Indianapolis, IN, USA;Children’s Health Services Research, Health Information and Translational Sciences Building, Suite #1000, 410 W. 10th St., 46202, Indianapolis, IN, USA;Departments of Philosophy and Religious Studies, Moi University, P.O. Box 3990, 30100, Eldoret, Kenya;Moi Teaching and Referral Hospital, P.O. Box 3, Nandi Road, 30100, Eldoret, Kenya;USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, 30100, Eldoret, Kenya;Department of Child Health and Paediatrics, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, 30100, Eldoret, Kenya;USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, 30100, Eldoret, Kenya;Department of Mental Health, School of Medicine, Moi University College of Health Sciences, P.O. Box 4606, 30100, Eldoret, Kenya;USAID - Academic Model Providing Access to Healthcare (AMPATH) Partnership, P.O. Box 4606, 30100, Eldoret, Kenya;Regenstrief Institute, Inc., 410 W. 10th St., Suite 2000, 46202-3012, Indianapolis, IN, USA;Department of Medicine, Indiana University School of Medicine, 545 Barnhill Drive, EH 317, 46202, Indianapolis, IN, USA;

关键词: Community-based research;    Sub-Saharan Africa;    Ethics;    Informed consent;    Kenya;   

DOI  :  10.1186/1472-6939-13-23

 received in 2012-06-19, accepted in 2012-09-03,  发布年份 2012

来源: Springer

【 摘 要 】

BackgroundInternational 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.MethodsWe 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.ResultsOur 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.ConclusionsOur 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.

【 授权许可】

CC BY   
© Vreeman et al.; licensee BioMed Central Ltd. 2012