Garcia-Iglesias Jaime, Beange Iona, Davidson Donald, Goopy Suzanne, Huang Huayi, Murray Fiona, Porteous Carol, Stevenson Elizabeth, Rhodes Sinead, Watson Faye, Fletcher-Watson Sue
Centre for Biomedicine, Self and Society, Usher Institute, University of Edinburgh, Edinburgh, UK.
Centre for Inflammation Research, Institute for Regeneration and Repair, University of Edinburgh, Edinburgh, UK.
Res Involv Engagem. 2024 Aug 7;10(1):83. doi: 10.1186/s40900-024-00617-8.
Public engagement with research (PEwR) has become increasingly integral to research practices. This paper explores the process and outcomes of a collaborative effort to address the ethical implications of PEwR activities and develop tools to navigate them within the context of a University Medical School. The activities this paper reflects on aimed to establish boundaries between research data collection and PEwR activities, support colleagues in identifying the ethical considerations relevant to their planned activities, and build confidence and capacity among staff to conduct PEwR projects. The development process involved the creation of a taxonomy outlining key terms used in PEwR work, a self-assessment tool to evaluate the need for formal ethical review, and a code of conduct for ethical PEwR. These tools were refined through iterative discussions and feedback from stakeholders, resulting in practical guidance for researchers navigating the ethical complexities of PEwR. Additionally, reflective prompts were developed to guide researchers in planning and conducting engagement activities, addressing a crucial aspect often overlooked in formal ethical review processes. The paper reflects on the broader regulatory landscape and the limitations of existing approval and governance processes, and prompts critical reflection on the compatibility of formal approval processes with the ethos of PEwR. Overall, the paper offers insights and practical guidance for researchers and institutions grappling with ethical considerations in PEwR, contributing to the ongoing conversation surrounding responsible research practices.
公众参与研究(PEwR)已日益成为研究实践中不可或缺的一部分。本文探讨了一项合作努力的过程和成果,该努力旨在解决PEwR活动的伦理问题,并在大学医学院的背景下开发应对这些问题的工具。本文所反思的活动旨在在研究数据收集与PEwR活动之间划定界限,帮助同事识别与其计划活动相关的伦理考量,并增强工作人员开展PEwR项目的信心和能力。开发过程包括创建一个分类法,概述PEwR工作中使用的关键术语,一个用于评估是否需要进行正式伦理审查的自我评估工具,以及一份关于符合伦理的PEwR的行为准则。这些工具通过与利益相关者的反复讨论和反馈进行了完善,从而为研究人员应对PEwR的伦理复杂性提供了实用指导。此外,还开发了反思提示,以指导研究人员规划和开展参与活动,解决了正式伦理审查过程中经常被忽视的一个关键方面。本文反思了更广泛的监管环境以及现有审批和治理流程的局限性,并促使人们对正式审批流程与PEwR理念的兼容性进行批判性反思。总体而言,本文为在PEwR中应对伦理考量的研究人员和机构提供了见解和实用指导,有助于围绕负责任研究实践的持续讨论。