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关于与社区成员共同开展 HIV 研究的伦理思考:案例研究。

Ethical Reflections on the Conduct of HIV Research with Community Members: A Case Study.

机构信息

8790University of California, Riverside, CA, USA.

HIV & Aging Research Project-Palm Springs, Palm Springs, CA, USA.

出版信息

J Empir Res Hum Res Ethics. 2021 Feb-Apr;16(1-2):65-77. doi: 10.1177/1556264620970802. Epub 2020 Nov 11.

Abstract

Some researchers continue to engage in "helicopter" or "parachute" research and do not ethically engage or collaborate with communities from which data are collected. This paper uses a case study to discuss the ethical issues arising from these research practices and the importance of increasing meaningful community involvement in research. Set in the context of research among older people living with HIV, the case study is followed by the perspectives of four research stakeholders. Through these perspectives, this paper demonstrates the ethical perils and harms that stem from research practices exemplified in the case. We argue instead for researchers to practice participatory research methods in line with community-based participatory research approaches (CBPR), good participatory practices (GPP), the Denver Principles, and CIOMS guidelines. Towards this end, we describe tools developed in collaboration with stakeholders in the research process to help researchers incorporate community participation and reduce unethical research conduct.

摘要

一些研究人员继续从事“直升机”或“降落伞”研究,不与从其收集数据的社区进行合乎道德的接触或合作。本文使用案例研究来讨论这些研究实践引起的伦理问题,以及增加社区在研究中实质性参与的重要性。该案例研究以艾滋病毒感染者老年人的研究为背景,随后是四位研究利益相关者的观点。通过这些观点,本文展示了案例中举例说明的研究实践所带来的伦理风险和危害。相反,我们主张研究人员按照基于社区的参与式研究方法(CBPR)、良好的参与式做法(GPP)、丹佛原则和 CIOMS 准则,采用参与式研究方法。为此,我们描述了与研究过程中的利益相关者合作开发的工具,以帮助研究人员纳入社区参与并减少不道德的研究行为。

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