title: Evidence-based neuroethics for neurodevelopmental disorders.
abstract: Many neurodevelopmental disorders affect early brain development in ways that are still poorly understood; yet, these disorders can place an enormous toll on patients, families, and society as a whole and affect all aspects of daily living for patients and their families. We describe a pragmatic, evidence-based framework for engaging in empiric ethics inquiry for a large consortium of researchers in neurodevelopmental disorders and provide relevant case studies of pragmatic neuroethics. The 3 neurodevelopmental disorders that are at the focus of our research, cerebral palsy (CP), autism spectrum disorder (ASD), and fetal alcohol spectrum disorder (FASD), bring unique and intersecting challenges of translating ethically research into clinical care for children and neonates. We identify and discuss challenges related to health care delivery in CP; neonatal neurological decision making; alternative therapies; and identity, integrity, and personhood.
authors.affiliation: Neuroethics Research Unit, Institut de recherches cliniques de Montréal, Montreal, Quebec, Canada. 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: Nina C
authors.initials: NC
authors.lastname: Di Pietro
authors.forename: Lucie
authors.initials: L
authors.lastname: Wade
authors.forename: Judy
authors.initials: J
authors.lastname: Illes
mesh_terms: D026688:Bioethical Issues; D001927:Brain Diseases; D002170:Canada; D006078:Government Programs / Q000458:organization & administration*; D006801:Humans