title: What Is the Role of Developmental Disability in Patient Selection for Pediatric Solid Organ Transplantation?
abstract: The National Organ Transplant Act stipulates that deceased donor organs should be justly and wisely allocated based on sound medical criteria. Allocation schemes are consistent across the country, and specific policies are publicly vetted. Patient selection criteria are largely in the hands of individual organ transplant programs, and consistent standards are less evident. This has been particularly apparent for patients with developmental disabilities (DDs). In response to concerns regarding the fairness of transplant evaluations for patients with DDs, we developed a transplant centerwide policy using a multidisciplinary, community-based approach. This publication details the particular policy of our center. All patients should receive individualized assessments using consistent standards; disability should be neither a relative nor an absolute contraindication to transplantation. External review can increase trust in the selection process. Patients in persistent vegetative states should not be listed for transplantation.
authors.affiliation: Division of Gastroenterology, Hepatology, and Nutrition, Boston Children's Hospital, Boston, MA.
authors.forename: D S
authors.initials: DS
authors.lastname: Kamin
authors.affiliation: Division of Respiratory Diseases, Boston Children's Hospital, Boston, MA.
authors.forename: D
authors.initials: D
authors.lastname: Freiberger
authors.affiliation: Department of Cardiology, Boston Children's Hospital, Boston, MA.
authors.forename: K P
authors.initials: KP
authors.lastname: Daly
authors.affiliation: Department of Psychology, Jackson Behavioral Health Hospital, Miami, FL.
authors.forename: M
authors.initials: M
authors.lastname: Oliva
authors.affiliation: Department of Social Work, Boston Children's Hospital, Boston, MA.
authors.forename: L
authors.initials: L
authors.lastname: Helfand
authors.affiliation: Office of the General Counsel, Boston Children's Hospital, Boston, MA.
authors.forename: K
authors.initials: K
authors.lastname: Haynes
authors.affiliation: Office of Ethics, Boston Children's Hospital, Boston, MA.
authors.forename: C H
authors.initials: CH
authors.lastname: Harrison
authors.affiliation: Pediatric Transplant Center, Boston Children's Hospital, Boston, MA.
authors.forename: H B
authors.initials: HB
authors.lastname: Kim
mesh_terms: D002648:Child; D002658:Developmental Disabilities / Q000503:physiopathology*; D006801:Humans; D007361:Intelligence Tests; D016377:Organ Transplantation / Q000941:ethics / Q000379:methods*; D018579:Patient Selection; D011379:Prognosis; D009927:Tissue and Organ Procurement; D014850:Waiting Lists
keywords: disparities; editorial; ethics and public policy; patient characteristics; pediatrics; personal viewpoint