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Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome.
Wheeler, Anne C; Wylie, Amanda; Raspa, Melissa; Villagomez, Adrienne; Miller, Kylee; Edwards, Anne; DeRamus, Margaret; Appelbaum, Paul S; Bailey, Donald B.
Afiliación
  • Wheeler AC; RTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA. Acwheeler@rti.org.
  • Wylie A; RTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
  • Raspa M; RTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
  • Villagomez A; Children's Hospital Colorado, Anschutz Medical Campus, 13123 East 16th Avenue, Aurora, CO, 80045, USA.
  • Miller K; Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill, 101 Renee Lynne Court, Carrboro, NC, 27714, USA.
  • Edwards A; Oregon Health Sciences University, 3181 SW Sam Jackson Park Rd, Portland, OR, 97239, USA.
  • DeRamus M; Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill, 101 Renee Lynne Court, Carrboro, NC, 27714, USA.
  • Appelbaum PS; RTI International, 3040 E. Cornwallis Road, P.O. Box 12194, Research Triangle Park, NC, 27709, USA.
  • Bailey DB; Carolina Institute for Developmental Disabilities, University of North Carolina at Chapel Hill, 101 Renee Lynne Court, Carrboro, NC, 27714, USA.
J Autism Dev Disord ; 50(5): 1725-1747, 2020 May.
Article en En | MEDLINE | ID: mdl-30825084
Although informed consent is critical for all research, there is increased ethical responsibility as individuals with intellectual or developmental disabilities (IDD) become the focus of more clinical trials. This study examined decisional capacity for informed consent to clinical trials in individuals with fragile X syndrome (FXS). Participants were 152 adolescents and adults (80 males, 72 females) with FXS who completed a measure of decisional capacity and a comprehensive battery of neurocognitive and psychiatric measures. Females outperformed males on all aspects of decisional capacity. The ability to understand aspects of the clinical trial had the strongest association with the ability to appreciate and reason about the decision. Scaffolding improved understanding, suggesting researchers can take steps to improve decisional capacity and the informed consent process.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Toma de Decisiones / Síndrome del Cromosoma X Frágil / Consentimiento Informado Tipo de estudio: Prognostic_studies Aspecto: Ethics Límite: Adolescent / Adult / Child / Female / Humans / Male Idioma: En Revista: J Autism Dev Disord Año: 2020 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Estados Unidos
Texto completo
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Toma de Decisiones / Síndrome del Cromosoma X Frágil / Consentimiento Informado Tipo de estudio: Prognostic_studies Aspecto: Ethics Límite: Adolescent / Adult / Child / Female / Humans / Male Idioma: En Revista: J Autism Dev Disord Año: 2020 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Estados Unidos