title: Ethics in neurodevelopmental disability.
abstract: Neurodevelopmental disabilities, like autism spectrum disorders and cerebral palsy are a common health problem in children. Given the impact of these conditions on children, families, and healthcare and social systems, the care of developmentally challenged children raises questions related to values and ethical principles. We review the common features of neurodevelopmental disorders that help understand the associated ethical questions. We focus on three major areas where ethical questions arise for clinicians and those involved in making decisions for or caring for these children: (1) the principles of decision-making and autonomy as they relate to developmental disability; (2) the issues related to quality of life that have long intersected with developmental disability; and (3) the use of unproven therapies and diagnostics that are particularly controversial given the extent that neurodevelopmental disabilities impact children and their families, yet active treatments options are limited.
authors.affiliation: Neuroethics Research Unit, Institut de recherches cliniques de Montréal, Montreal, Canada; Department of Medicine and Department of Social and Preventive Medicine, University of Montreal, Montreal, Canada; Departments of Neurology and Neurosurgery, McGill University, Montreal, Canada. Electronic address: eric.racine@ircm.qc.ca.
authors.forename: Eric
authors.initials: E
authors.lastname: Racine
authors.forename: Emily
authors.initials: E
authors.lastname: Bell
authors.forename: Michael
authors.initials: M
authors.lastname: Shevell
mesh_terms: D002648:Child; D002658:Developmental Disabilities; D006233:Persons with Disabilities / Q000331:legislation & jurisprudence; D006801:Humans; D009462:Neurology / Q000941:ethics* / Q000331:legislation & jurisprudence
keywords: autism spectrum disorders; cerebral palsy; ethics; neurodevelopmental disorders; neuroethics; pediatrics