Nuffield Department of Population Health, Ethox Centre and Wellcome Centre for Ethics & Humanities, University of Oxford, Oxford, UK.
Africa Health Research Institute, KwaZulu-Natal, South Africa.
Bioethics. 2023 May;37(4):379-388. doi: 10.1111/bioe.13139. Epub 2023 Jan 29.
Despite advances in theory, often driven by feminist ethicists, research ethics struggles in practice to adequately account for and respond to the agency and autonomy of people considered vulnerable in the research context. We argue that shifts within feminist research ethics scholarship to better characterise and respond to autonomy and agency can be bolstered by further grounding in discourses from the social sciences, in work that confirms the complex nature of human agency in contexts of structural and other sources of vulnerability. We discuss some of the core concepts and critiques emerging from the literature on women and children's agency in under-resourced settings, highlighting calls to move from individualistic to relational models of agency, and to recognise the ambiguous, value-laden, and heterogeneous nature of the concept. We then draw out what these conceptual shifts might mean for research ethics obligations and guidance, illustrating our analysis using a case vignette based on research ethics work conducted in South Africa. We conclude that if research practices are to be supportive of agency, it will be crucial to scrutinise the moral judgements which underpin accounts of agency, derive more situated definitions of and responses to agency, and enable people and participants to influence these based on their own experiences and self-perceptions.
尽管理论有所进步,常常是由女性主义伦理学家推动的,但研究伦理在实践中仍难以充分考虑和回应在研究背景下被认为是弱势的人的代理权和自主性。我们认为,女性主义研究伦理学术研究中为了更好地描述和回应自主性和代理权而做出的转变,可以通过进一步扎根于社会科学的论述得到加强,这些论述证实了在结构脆弱性和其他脆弱性来源的背景下,人类代理权的复杂性。我们讨论了一些核心概念和批判,这些概念和批判来自于关于资源匮乏环境下妇女和儿童代理权的文献,强调了从个体化向关系化的代理权模型转变的呼吁,并认识到该概念的模糊性、价值性和异质性。然后,我们从中得出这些概念转变对研究伦理义务和指导的意义,使用一个基于在南非进行的研究伦理工作的案例片段来说明我们的分析。我们的结论是,如果研究实践要支持代理权,那么仔细审查支撑代理权解释的道德判断、从更具体的角度定义和回应代理权以及使人们和参与者能够根据自己的经验和自我认知来影响这些判断将是至关重要的。