Halonen Ulla, Aaltonen Mari, Aerschot Lina Van, Pirhonen Jari
Faculty of Humanities and Social Sciences, University of Jyväskylä, Finland.
Older people Services, Finnish Institute for Health and Welfare, Finland.
Dementia (London). 2024 Nov 7:14713012241299015. doi: 10.1177/14713012241299015.
Epistemic injustice refers to wronging or mistreating individuals in terms of their capacity as knowers, based on prejudices or negative attitudes. Excluding people with dementia from research is a form of epistemic injustice. In this article, we discuss epistemic injustice associated with data collection processes and the participation of people with dementia in scientific research. The challenges of participation that we discuss pertain to the role of gatekeepers and ethical research perspectives. The arguments presented are based on previous research, experiences from our current project, and critical self-assessment regarding the latter. The aim is to shed light on what enables or prevents people living with dementia from participating in research, and how this is connected to epistemic injustice. It is known that prejudices related to dementia affect both researchers and people living with dementia: the former tend to exclude people with dementia, and the latter may practice self-silencing due to dementia-related stigma. In addition to these individual issues, we argue that epistemic injustice occurs at a structural level, where a major role is played by gatekeepers and research ethics panels. As close family members, health officials, and dementia-related associations are the main gatekeepers, their attitudes and perceptions are highlighted. In terms of ethical issues, the concept of informed consent needs to be elaborated. If the research is not expected to harm participants and may contribute to improving the lives of those with dementia, the perspective should be shifted from informed consent to ongoing consent assessment. While acknowledging the features and symptoms of dementia, researchers should be more courageous, trust in the good cause, and enable persons living with dementia to participate in research that concerns them. This is the only way for researchers to genuinely understand the social world, experiences, and needs of those with dementia and to address epistemic injustice.
认知不公正指基于偏见或负面态度，在认知者能力方面对个人进行的错误对待或虐待。将痴呆症患者排除在研究之外是一种认知不公正的形式。在本文中，我们讨论与数据收集过程以及痴呆症患者参与科学研究相关的认知不公正。我们所讨论的参与挑战涉及把关人的角色和伦理研究视角。所提出的论点基于先前的研究、我们当前项目的经验以及对后者的批判性自我评估。目的是阐明是什么促进或阻碍了痴呆症患者参与研究，以及这与认知不公正是如何相关联的。众所周知，与痴呆症相关的偏见会影响研究人员和痴呆症患者：前者倾向于排除痴呆症患者，而后者可能由于与痴呆症相关的污名而选择自我沉默。除了这些个体问题，我们认为认知不公正发生在结构层面，把关人和研究伦理委员会在其中扮演着主要角色。作为近亲、卫生官员和与痴呆症相关的协会是主要把关人，他们的态度和观念受到了关注。在伦理问题方面，需要对知情同意的概念进行阐述。如果研究预计不会对参与者造成伤害，并且可能有助于改善痴呆症患者的生活，那么视角应从知情同意转向持续的同意评估。在承认痴呆症的特征和症状的同时，研究人员应该更有勇气，相信这项善举，并使痴呆症患者能够参与与他们相关的研究。这是研究人员真正理解痴呆症患者的社会世界、经历和需求并解决认知不公正的唯一途径。
