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支持智力和发育障碍者在大流行期间能力的伦理框架及建议。

Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics.

作者信息

Sullivan William F, Björne Petra, Heng John, Northway Ruth

机构信息

Department of Family and Community Medicine and Academic Family Health Team St. Michael's Hospital Toronto Ontario Canada.

Department for Disability Support Malmö Sweden.

出版信息

J Policy Pract Intellect Disabil. 2022 Mar;19(1):116-124. doi: 10.1111/jppi.12413. Epub 2022 Feb 25.

Abstract

A growing body of knowledge highlights the negative impact of the COVID-19 pandemic on the health and well-being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public-health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well-being of people with IDD. This paper proposes an ethics framing for policy and practices regarding clinical care and public health based on Martha Nussbaum's approach to Capability Theory. Such a framework can reorient healthcare professionals and healthcare systems to support the capabilities of people with IDD to protect, recover, and promote health and well-being. It could be applied during this pandemic and in planning for future pandemics. The paper presents some practical recommendations that follow from applying this framework.

摘要

越来越多的知识表明,新冠疫情对许多智力和发育障碍者(IDD)及其照料者的健康和福祉产生了负面影响。其根本原因不仅在于生物医学因素,还涉及伦理问题。这些问题源于长期存在且普遍存在的结构性不公正以及负面社会态度,这些态度持续贬低IDD患者的价值,并且是此次疫情期间某些临床决策和公共卫生政策框架的基础。除非解决这些基本的伦理缺陷,否则疫情应对措施将继续损害IDD患者的人权和福祉。本文基于玛莎·努斯鲍姆的能力理论方法,为临床护理和公共卫生的政策及实践提出了一种伦理框架。这样一个框架可以使医疗专业人员和医疗系统重新定位,以支持IDD患者保护、恢复和促进健康及福祉的能力。它可应用于此次疫情期间以及未来疫情的规划中。本文还提出了应用该框架后得出的一些实际建议。

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Disability Discrimination, Medical Rationing and COVID-19.残疾歧视、医疗资源分配与新冠疫情
Asian Bioeth Rev. 2020 Sep 3;12(4):511-518. doi: 10.1007/s41649-020-00147-x. eCollection 2020 Dec.

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