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利益相关者驱动的、达成共识的方法来设计一个伦理框架和指南,以进行参与式研究。

Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research.

机构信息

Department of Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America.

Department of Social Medicine, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America.

出版信息

PLoS One. 2018 Jun 21;13(6):e0199451. doi: 10.1371/journal.pone.0199451. eCollection 2018.

Abstract

Increasingly, researchers seek to engage communities, patients, and stakeholders as partners in the process and products of health research. However, there is no existing stakeholder-driven ethical framework for such engaged scholarship. We employed an iterative, stakeholder-engaged method to develop a data-driven framework for the ethical review and conduct of engaged scholarship. We used consensus development conference methods and a modified Delphi survey to engage 240 community members, ethicists, and academic researchers. This multi-staged process produced a framework with 4 domains: vision of equitable and just research, relationship dynamics, community-informed risk/benefits assessment, and accountability. Within the framework, 4 cross-cutting considerations and 15 statements explicate the stakeholders' priorities for the ethical review and conduct of engaged scholarship. Though the findings are promising, the study is limited in that it focuses on stakeholder perspectives, but does not actually evaluate or apply the findings in the field. The stakeholder-engaged framework provides a platform for further articulation of ethical practices and policy for engaged scholarship.

摘要

越来越多的研究人员希望让社区、患者和利益攸关方作为合作伙伴,参与到健康研究的过程和成果中。然而,目前还没有针对这种参与式学术研究的利益攸关方驱动的伦理框架。我们采用迭代的、利益攸关方参与的方法,为参与式学术研究的伦理审查和实施制定了一个数据驱动的框架。我们使用共识发展会议方法和修改后的 Delphi 调查,让 240 名社区成员、伦理学家和学术研究人员参与进来。这一多阶段过程产生了一个包含 4 个领域的框架:公平公正研究的愿景、关系动态、社区知情的风险/收益评估以及问责制。在该框架内,4 个跨领域的考虑因素和 15 个说明阐述了利益攸关方对参与式学术研究的伦理审查和实施的优先事项。尽管研究结果很有前景,但这项研究也存在局限性,因为它只关注利益攸关方的观点,而实际上并没有在实地评估或应用研究结果。利益攸关方参与的框架为进一步阐述参与式学术研究的伦理实践和政策提供了一个平台。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d0ba/6013201/65f1c5a213bb/pone.0199451.g001.jpg

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