在为生物医学研究设定优先事项时，（如果有的话）应如何让社区有意义地参与进来？来自生物医学研究界的观点。
How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community.
机构信息
Royal Australian College of General Practitioners, Melbourne, Australia.
Queensland Bioethics Centre, Australian Catholic University, 1100 Nudgee Rd., Brisbane, Australia.
出版信息
BMC Med Ethics. 2023 Feb 6;24(1):6. doi: 10.1186/s12910-022-00879-5.
BACKGROUND
There is now rising consensus that community engagement is ethically and scientifically essential for all types of health research. Yet debate continues about the moral aims, methods and appropriate timing in the research cycle for community engagement to occur, and whether the answer should vary between different types of health research. Co-design and collaborative partnership approaches that involve engagement during priority-setting, for example, are common in many forms of applied health research but are not regular practice in biomedical research. In this study, we empirically examine the normative question: should communities be engaged when setting priorities for biomedical research projects, and, if so, how and for what purpose?
METHODS
We conducted in-depth interviews with 31 members of the biomedical research community from the UK, Australia, and African countries who had engaged communities in their work. Interview data were thematically analysed.
RESULTS
Our study shows that biomedical researchers and community engagement experts strongly support engagement in biomedical research priority-setting, except under certain circumstances where it may be harmful to communities. However, they gave two distinct responses on what ethical purpose it should serve-either empowerment or instrumental goals-and their perspectives on how it should achieve those goals also varied. Three engagement approaches were suggested: community-initiated, synergistic, and consultative. Pre-engagement essentials and barriers to meaningful engagement in biomedical research priority-setting are also reported.
CONCLUSIONS
This study offers initial evidence that meaningful engagement in priority-setting should potentially be defined slightly differently for biomedical research relative to certain types of applied health research and that engagement practice in biomedical research should not be dominated by instrumental goals and approaches, as is presently the case.
背景
现在越来越多的人认为，社区参与对于所有类型的健康研究都是伦理和科学上必不可少的。然而，关于社区参与在研究周期中的道德目标、方法和适当时间，以及答案是否应该因不同类型的健康研究而有所不同，仍存在争议。例如，共同设计和合作伙伴关系方法涉及在优先事项设定过程中的参与，在许多形式的应用健康研究中很常见，但在生物医学研究中并非常规做法。在这项研究中，我们从经验上检验了规范性问题：在为生物医学研究项目设定优先事项时，是否应该让社区参与，如果是，应该如何以及出于什么目的？
方法
我们对来自英国、澳大利亚和非洲国家的 31 名参与过社区工作的生物医学研究界成员进行了深入访谈。对访谈数据进行了主题分析。
结果
我们的研究表明，生物医学研究人员和社区参与专家强烈支持在生物医学研究优先事项设定中进行参与，除非在某些情况下可能对社区造成伤害。然而，他们对它应该服务于何种道德目的——授权还是工具性目标——给出了截然不同的回应，他们对如何实现这些目标的看法也有所不同。提出了三种参与方法：社区发起、协同和协商。还报告了预先参与的要点和在生物医学研究优先事项设定中进行有意义的参与的障碍。
结论
这项研究提供了初步证据，表明在优先事项设定中有意义的参与对于生物医学研究相对于某些类型的应用健康研究来说，可能需要略微不同的定义，并且生物医学研究中的参与实践不应像目前那样主要由工具性目标和方法主导。
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