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. 2024 Dec 4:48:e126.
doi: 10.26633/RPSP.2024.126. eCollection 2024.

[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]

[Article in Spanish]
Sarah Carracedo  1 , Bernardo Aguilera  2 , Renato Constantino  3
Affiliations

[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]

[Article in Spanish]
Sarah Carracedo et al. Rev Panam Salud Publica. .

Abstract
in English, Spanish, Portuguese

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.

Los estándares éticos internacionales para la investigación con personas que tienen disminuida su capacidad para tomar decisiones permiten delegar la decisión sobre la participación en una investigación en un representante que puede actuar como un sustituto. Esto, sin embargo, ha sido cuestionado por la Convención sobre los derechos de las personas con discapacidad (CDPD), que establece que toda persona con discapacidad, cualquiera sea su condición mental y neurológica, siempre tiene capacidad jurídica universal para tomar sus decisiones. La incompatibilidad entre los estándares éticos y la CDPD es evidente e impacta en la realización de investigaciones con personas con discapacidad mental, tan necesaria para la mejora de su salud y bienestar. El presente artículo plantea una propuesta que buscar conciliar la CDPD con los estándares éticos para la investigación en lo que respecta a los procesos de consentimiento informado y provee recomendaciones prácticas, sobre todo para los países de América Latina que aún tienen el desafío de implementar la CDPD en el ámbito de la investigación.

Os princípios éticos internacionais para pesquisas envolvendo pessoas com capacidade limitada de tomada de decisão permitem delegar a decisão sobre sua participação em pesquisas a um representante que possa agir como substituto. No entanto, isso foi questionado pela Convenção sobre os Direitos das Pessoas com Deficiência (CDPD), que afirma que todas as pessoas com deficiência, independentemente de sua condição mental e neurológica, sempre têm capacidade legal plena para tomar decisões. A incompatibilidade entre os princípios éticos e a CDPD é evidente e afeta a realização de pesquisas com pessoas com deficiência intelectual, algo tão necessário para a melhoria da saúde e do bem-estar dessas pessoas. Este artigo apresenta uma proposta que busca conciliar a CDPD com os princípios éticos de pesquisa no que diz respeito aos processos de consentimento livre e esclarecido e fornece recomendações práticas, especialmente para os países latino-americanos que ainda enfrentam o desafio de implementar a CDPD no âmbito da pesquisa.

Keywords: Ethics, research; informed consent; persons with mental disabilities.

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Conflict of interest statement

Conflicto de intereses Ninguno declarado por los autores.

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