Abstract:
Current research ethics frameworks were developed on the footprint of biomedical, experimental research and present several pitfalls when applied to non-experimental social sciences. This work explores how the normative principles underpinning policy and regulatory frameworks of research ethics and the related operational processes work in practice in the context of collaborative health and social care research. The work was organised in three phases. First, UK research ethics policy documents were analysed thematically, with themes further organised under the categories of \'Principles\' and \'Processes\'. Next, we conducted a scoping review of articles about research ethics in the context of collaborative health and social care research, published in English between 2010 and 2022. We then held an exploratory focus group with ten academic researchers with relevant experience to gather their views on how the research ethics system works in practice in England (UK). The thematic framework developed in the first phase supported the analysis of the articles included in the scoping review and of focus group data. The analysis of policy documents identified twelve themes. All were associated to both a principle and a related operational process. The scoping review identified 31 articles. Across these, some themes were barely acknowledged (e.g., Compliance with legislation). Other themes were extensively covered (e.g., The working of Research Ethics Committees), often to discuss issues and limitations in how, in practice, the research ethics system and its processes deal with collaborative research and to suggest options for improvement. Focus group data were largely consistent with the findings of the scoping review. This work provides evidence of the poor alignment between how the research ethics system is normatively expected to work and how it works in practice and offers options that could make research ethics more fit for purpose when addressing collaborative research in health and social care.
摘要:
当前的研究伦理框架是在生物医学的足迹上发展起来的,实验研究,并提出了应用于非实验社会科学的几个陷阱。这项工作探讨了在合作健康和社会护理研究的背景下,支持研究伦理的政策和监管框架以及相关操作过程的规范原则如何在实践中发挥作用。这项工作分三个阶段进行。首先,英国研究伦理政策文件进行了主题分析,在“原则”和“过程”类别下进一步组织主题。接下来,我们对合作健康和社会护理研究背景下的研究伦理的文章进行了范围审查,2010年至2022年间以英文出版。然后,我们与十名具有相关经验的学术研究人员举行了一个探索性焦点小组,以收集他们对英国(UK)研究伦理体系在实践中如何运作的看法。第一阶段制定的主题框架支持对范围审查中的文章和焦点小组数据的分析。对政策文件的分析确定了十二个主题。所有这些都与原则和相关的操作过程相关联。范围审查确定了31篇文章。跨越这些,一些主题几乎没有得到承认(例如,遵守法律)。其他主题被广泛涵盖(例如,研究伦理委员会的工作),经常讨论问题和限制,在实践中,研究伦理系统及其过程涉及合作研究,并提出改进方案。焦点组数据与范围审查的结果基本一致。这项工作提供了证据,证明了规范预期的研究伦理系统如何工作与其在实践中的工作方式之间存在不良的一致性,并提供了可以使研究伦理在解决健康和社会护理合作研究时更适合目的的选项。