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[依据《残疾人权利公约》制定的涉及精神残疾者的研究伦理标准:一项提案 根据《残疾人权利公约》制定的针对智力残疾者的研究伦理原则:一项提案]

[Ethical standards for research involving persons with mental disabilities pursuant to the Convention on the Rights of Persons with Disabilities: a proposalPrincípios éticos para pesquisas com pessoas com deficiência intelectual de acordo com a Convenção sobre os Direitos das Pessoas com Deficiência: uma proposta].

作者信息

Carracedo Sarah, Aguilera Bernardo, Constantino Renato

机构信息

Pontificia Universidad Católica del Perú, Lima, Perú. Pontificia Universidad Católica del Perú Lima Perú.

Facultad de Medicina y Ciencia, Universidad San Sebastián, Santiago, Chile. Facultad de Medicina y Ciencia Universidad San Sebastián Santiago Chile.

出版信息

Rev Panam Salud Publica. 2024 Dec 4;48:e126. doi: 10.26633/RPSP.2024.126. eCollection 2024.

DOI:10.26633/RPSP.2024.126
PMID:39633823
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11616466/
Abstract

International ethical standards for research involving persons who have diminished decision-making capacity allow for delegation of the decision to participate in research to a representative who can act as a surrogate decision-maker. However, this approach has been questioned by the Convention on the Rights of Persons with Disabilities (CRPD), according to which all persons with disabilities, regardless of their mental or neurological condition, always have universal legal capacity to make decisions. The incompatibility between ethical standards and the CRPD is clear and impacts the conduct of research involving people with mental disabilities, which is essential for the improvement of their health and well-being. This article advances a proposal that seeks to reconcile the CRPD with ethical standards for informed consent processes in research and provides practical recommendations, especially for Latin American countries that still face challenges in implementing the CRPD in the research field.

摘要

涉及决策能力减弱者的研究的国际伦理标准允许将参与研究的决策权委托给能够担任替代决策者的代表。然而,《残疾人权利公约》(CRPD)对这种做法提出了质疑,根据该公约,所有残疾人,无论其精神或神经状况如何,始终具有做出决策的普遍法律能力。伦理标准与《残疾人权利公约》之间的不相容性显而易见,并影响到涉及精神残疾者的研究的开展,而这类研究对于改善他们的健康和福祉至关重要。本文提出了一项建议,旨在使《残疾人权利公约》与研究中知情同意程序的伦理标准相协调,并提供切实可行的建议,特别是针对那些在研究领域实施《残疾人权利公约》仍面临挑战的拉丁美洲国家。

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Mental health research goals and the National Institute for Health Research.心理健康研究目标与英国国家卫生研究院
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Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies.开展无障碍研究:将残疾人纳入公共卫生、流行病学和结局研究。
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