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Stakeholder-driven, consensus development methods to design an ethical framework and guidelines for engaged research
PLOS ONE ( IF 3.7 ) Pub Date : 2018-06-21 , DOI: 10.1371/journal.pone.0199451
Giselle Corbie-Smith , Mysha Wynn , Alan Richmond , Stuart Rennie , Melissa Green , Stephanie M. Hoover , Sable Watson-Hopper , Kyle Simone Nisbeth

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.



中文翻译:

利益相关者驱动的共识开发方法,旨在为参与研究设计道德框架和指南

研究人员越来越多地寻求社区,患者和利益相关者作为合作伙伴参与健康研究的过程和产品。但是,对于这种敬业的奖学金,目前没有由利益相关者驱动的道德框架。我们采用了一种与利益相关者互动的迭代方法,以开发一种以数据为驱动力的框架,以进行道德审查和聘用奖学金的行为。我们使用共识开发会议方法和经过改进的Delphi调查来吸引240位社区成员,伦理学家和学术研究人员。这个多阶段的过程产生了一个包含四个领域的框架: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。在框架内,4项交叉考虑和15项陈述阐明了利益相关者进行道德审查和聘用奖学金行为的优先级。尽管研究结果令人鼓舞,但该研究的局限性在于它只关注利益相关者的观点,但并未实际评估或应用该研究结果。利益相关者参与的框架提供了一个平台,用于进一步阐明从事学术活动的道德规范和政策。

更新日期:2018-06-22
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