一项使用传统社区集会的定性研究，旨在调查肯尼亚西部社区对知情同意和研究参与的看法。
A qualitative study using traditional community assemblies to investigate community perspectives on informed consent and research participation in western Kenya.
机构信息
Department of Pediatrics, Indiana University School of Medicine, 705 Riley Hospital Drive, Room 5900, Indianapolis, IN 46202, USA.
出版信息
BMC Med Ethics. 2012 Sep 25;13:23. doi: 10.1186/1472-6939-13-23.
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.
背景
国际合作者在设计和实施伦理生物医学研究时面临挑战。评估社区对研究的理解以及知情同意等过程，可以使研究人员在特定环境中更好地保护研究参与者；然而，在健康研究中，尤其是在资源有限的环境中，很少有研究考察社区观点，也很少有研究采用策略让社区参与研究过程。我们的目标是为肯尼亚西部和类似资源有限环境中的生物医学研究提供伦理研究实践方面的信息。
方法
我们试图在肯尼亚西部的一个合作、多国研究网络中，利用传统的东非社区集会（mabaraza），在一项定性研究中了解社区对生物医学研究和知情同意的观点。分析包括对来自 mabaraza 的转录本进行手动、逐步编码，以确定新出现的核心概念。
结果
我们对来自两个 mabaraza 的 108 名社区成员的发现表明，尽管参与者理解一些生物医学研究的原则，但他们强调参与研究的预期收益超过潜在风险。许多社区成员将健康研究等同于 HIV 检测或护理，这在一定程度上可以解释为这项特定研究的背景。除了将知情同意视为理解和接受在研究活动中的角色外，参与者还支持社区在决定参与研究方面发挥更大作用，特别是在涉及儿童的情况下，可以通过社区同意的过程来实现。
结论
我们的研究表明，国际生物医学研究必须考虑社区对研究和知情同意的理解，特别是在涉及儿童的情况下。此外，传统的社区论坛，如东非的 mabaraza，可以有效地用于收集这些数据，并可以作为进一步让社区参与社区同意和研究其他方面的论坛。
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