Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome
| العنوان: | Decisional Capacity for Informed Consent in Males and Females with Fragile X Syndrome |
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| المؤلفون: | Margaret DeRamus, Amanda Wylie, Anne Edwards, Paul S. Appelbaum, Kylee Miller, Adrienne Villagomez, Anne Wheeler, Melissa Raspa, Donald B. Bailey |
| المصدر: | J Autism Dev Disord |
| بيانات النشر: | Springer Science and Business Media LLC, 2019. |
| سنة النشر: | 2019 |
| مصطلحات موضوعية: | Adult, Male, medicine.medical_specialty, Adolescent, Decision Making, Morals, Article, Young Adult, 03 medical and health sciences, Sex Factors, 0302 clinical medicine, Informed consent, Intellectual disability, Developmental and Educational Psychology, medicine, Humans, 0501 psychology and cognitive sciences, Child, Informed Consent, Public health, 05 social sciences, Cognition, medicine.disease, Fragile X syndrome, Clinical trial, Fragile X Syndrome, Autism, Female, Comprehension, Psychology, Neurocognitive, 030217 neurology & neurosurgery, 050104 developmental & child psychology, Clinical psychology |
| الوصف: | 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. |
| تدمد: | 1573-3432 0162-3257 |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::ce18e62d00e2d53e89393107e505960d https://doi.org/10.1007/s10803-019-03930-4 |
| حقوق: | OPEN |
| رقم الأكسشن: | edsair.doi.dedup.....ce18e62d00e2d53e89393107e505960d |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 15733432 01623257 |
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