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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Ethical challenges of capacity assessment in neurodevelopmental and intellectual disabilities
Jonathan D Santoro1,2, Lilia Kazerooni3, Maeve C Lucas3
1Division of Neurology, Department of Pediatrics, Children's Hospital Los Angeles, 4650 Sunset Blvd, Mailstop 82, Los Angeles, CA, 90027, USA. jdsantoro@chla.usc.edu.
Abstract:
Individuals with neurodevelopmental disorders and intellectual disabilities face research exclusion due to complex consent processes. This article highlights how fluctuating capacity challenges binary assessment models. We propose ongoing capacity monitoring, independent consent monitors, and adaptive tools to ensure ethical inclusivity and respect for participant autonomy in clinical research.
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