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Working with Concepts: The Role of Community in International Collaborative Biomedical Research

机译:与概念合作:社区在国际合作生物医学研究中的作用

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摘要

The importance of communities in strengthening the ethics of international collaborative research is increasingly highlighted, but there has been much debate about the meaning of the term ‘community’ and its specific normative contribution. We argue that ‘community’ is a contingent concept that plays an important normative role in research through the existence of morally significant interplay between notions of community and individuality. We draw on experience of community engagement in rural Kenya to illustrate two aspects of this interplay: (i) that taking individual informed consent seriously involves understanding and addressing the influence of communities in which individuals’ lives are embedded; (ii) that individual participation can generate risks and benefits for communities as part of the wider implications of research. We further argue that the contingent nature of a community means that defining boundaries is generally a normative process itself, with ethical implications. Community engagement supports the enactment of normative roles; building mutual understanding and trust between researchers and community members have been important goals in Kilifi, requiring a broad range of approaches. Ethical dilemmas are continuously generated as part of these engagement activities, including the risks of perverse outcomes related to existing social relations in communities and conditions of ‘half knowing’ intrinsic to processes of developing new understandings.
机译:人们越来越强调社区在加强国际合作研究伦理方面的重要性,但是关于“社区”一词的含义及其具体的规范性贡献已经引起了很多争论。我们认为,“社区”是一个偶然的概念,因为社区和个性概念之间存在道德上的重大相互作用,因此在研究中起着重要的规范作用。我们借鉴肯尼亚农村社区参与的经验来说明这种相互作用的两个方面:(i)认真征得个人的知情同意涉及理解和解决嵌入个人生活的社区的影响; (ii)作为研究的更广泛意义的一部分,个人参与可以为社区带来风险和收益。我们进一步认为,社区的偶然性意味着界定边界通常本身就是一个规范过程,具有伦理意义。社区参与支持制定规范性角色;在研究人员和社区成员之间建立相互理解和信任是Kilifi的重要目标,需要多种方法。在这些参与活动中,道德困境不断产生,包括与社区现有社会关系有关的不正当结果的风险以及发展新认识过程所固有的“半知”条件。

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