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Am J Bioeth ; 20(4): 13-24, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32208091

RESUMO

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.


Assuntos
Transtorno do Espectro Autista/prevenção & controle , Organizações/ética , Pais , Defesa do Paciente/ética , Defesa do Paciente/normas , Política de Saúde/legislação & jurisprudência , Humanos , Política , Responsabilidade Social , Participação dos Interessados , Estados Unidos
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