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加拿大研究伦理治理中的(认知)不公正与抵抗

(Epistemic) Injustice and Resistance in Canadian Research Ethics Governance.

作者信息

Clairmont Sarah, Doerksen Emily, Gunay Alize Ece, Friesen Phoebe

机构信息

Researcher and PhD candidate in the Department of Philosophy at McGill University.

Researcher and recent graduate from the Department of Human Genetics and the Department of Equity, Ethics, and Policy at McGill University.

出版信息

Ethics Hum Res. 2025 Jan-Feb;47(1):2-19. doi: 10.1002/eahr.60004.

DOI:10.1002/eahr.60004
PMID:39749365
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11696195/
Abstract

This article brings a philosophical perspective to bear on issues of research ethics governance as it is practiced and organized in Canada. Insofar as the processes and procedures that constitute research oversight are meant to ensure the ethical conduct of research, they are based on ideas or beliefs about what ethical research entails and about which processes will ensure the ethical conduct of research. These ideas and beliefs make up an epistemic infrastructure underlying Canada's system of research ethics governance, but, we argue, extensive efforts by community members to fill gaps in that system suggest that these ideas may be deficient. Our aim is to make these deficiencies explicit through critical analysis by briefly introducing the philosophical literature on epistemic injustice and ignorance, and by drawing on this literature and empirical evidence to examine how injustice and ignorance show up across three levels of research ethics governance: research ethics boards, regulations, and training. Following this critique, and drawing on insights from the same philosophical tradition, we highlight the work that communities across Canada have done to rewrite and rework how research ethics as a site of epistemic resistance is practiced.

摘要

本文从哲学角度探讨了加拿大研究伦理治理在实践和组织过程中所面临的问题。构成研究监督的流程和程序旨在确保研究的伦理行为,它们基于关于伦理研究的内涵以及哪些流程能够确保研究伦理行为的观念或信念。这些观念和信念构成了加拿大研究伦理治理体系的认知基础,但我们认为,社区成员为填补该体系漏洞所做的大量努力表明这些观念可能存在缺陷。我们的目标是通过批判性分析来揭示这些缺陷,简要介绍关于认知不公正和无知的哲学文献,并利用这些文献和实证证据来审视不公正和无知在研究伦理治理的三个层面(研究伦理委员会、法规和培训)中是如何体现的。在进行这种批判之后,借鉴同一哲学传统的见解,我们强调了加拿大各地社区为重新书写和重塑作为认知抵抗场所的研究伦理实践所做的工作。

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本文引用的文献

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Community-Engaged Research Ethics Training (CERET): developing accessible and relevant research ethics training for community-based participatory research with people with lived and living experience using illicit drugs and harm reduction workers.社区参与式研究伦理培训(CERET):为使用非法药物和减少伤害工作者的具有生活和生存经验的人开展基于社区的参与式研究开发可及和相关的研究伦理培训。
Harm Reduct J. 2023 Jul 6;20(1):86. doi: 10.1186/s12954-023-00818-6.
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A Cross Sectional Survey of Recruitment Practices, Supports, and Perceived Roles for Unaffiliated and Non-scientist Members of IRBs.IRB 中无隶属关系和非科学家成员的招募实践、支持和感知角色的横断面调查。
AJOB Empir Bioeth. 2023;14(3):174-184. doi: 10.1080/23294515.2023.2180107. Epub 2023 Feb 23.
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White Ignorance in Pain Research: Racial Differences and Racial Disparities.疼痛研究中的白色无知:种族差异和种族不平等。
Kennedy Inst Ethics J. 2022;32(2):205-235. doi: 10.1353/ken.2022.0012.
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A New Era of Indigenous Research: Community-based Indigenous Research Ethics Protocols in Canada.一个新的原住民研究时代:加拿大基于社区的原住民研究伦理协议。
J Empir Res Hum Res Ethics. 2021 Oct;16(4):403-417. doi: 10.1177/15562646211023705. Epub 2021 Jun 9.
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Epistemic Strategies in Ethical Review: REB Members' Experiences of Assessing Probable Impacts of Research for Human Subjects.伦理审查中的认知策略:REB 成员评估人类研究对象可能受到的影响的经验。
J Empir Res Hum Res Ethics. 2020 Dec;15(5):383-395. doi: 10.1177/1556264619872369. Epub 2019 Sep 15.
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Research 101: A process for developing local guidelines for ethical research in heavily researched communities.研究 101:为深入研究的社区制定伦理研究地方准则的过程。
Harm Reduct J. 2019 Jul 1;16(1):41. doi: 10.1186/s12954-019-0315-5.
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Understanding community-based participatory research through a social movement framework: a case study of the Kahnawake Schools Diabetes Prevention Project.通过社会运动框架理解社区参与式研究:以 Kahnawake 学校糖尿病预防项目为例。
BMC Public Health. 2018 Apr 12;18(1):487. doi: 10.1186/s12889-018-5412-y.
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Telling our stories: heroin-assisted treatment and SNAP activism in the Downtown Eastside of Vancouver.讲述我们的故事:温哥华东区市中心的海洛因辅助治疗与食品援助营养项目行动主义
Harm Reduct J. 2017 May 18;14(1):27. doi: 10.1186/s12954-017-0152-3.
9
Community Partnered Research Ethics Training in Practice: A Collaborative Approach to Certification.实践中的社区合作研究伦理培训:认证的协作方法
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10
"What Do They Really Mean by Partnerships?" Questioning the Unquestionable Good in Ethics Guidelines Promoting Community Engagement in Indigenous Health Research.“伙伴关系究竟意味着什么?” 质疑促进社区参与原住民健康研究的伦理准则中不容置疑的益处。
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