Ethical challenges of capacity assessment in neurodevelopmental and intellectual disabilities

BMC Medical Ethics 2026 Open access

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Authors: Jonathan D. Santoro, Lilia Kazerooni, Maeve C. Lucas, Jenny Kingsley, Michael S. Rafii
DOI: 10.1186/s12910-026-01481-9
Cited by: 1
References: 8

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.

Fields of Study & Subjects

Healthcare Decision-Making and Restraints Down syndrome and intellectual disability research Ethics in Clinical Research

Publication details

Journal / source
BMC Medical Ethics
Publisher
Springer Science and Business Media LLC
Volume
27
Issue
1
Publication date
25 May 2026
Language
EN