title: The blurred distinction between treatable and untreatable conditions in newborn screening.
abstract: Newborn screening is increasingly possible for conditions that do not have medical treatments that must be provided early in order to be effective. This raises a fundamental question of what information should be disclosed to parents. Historically the potential for treatment has been essential before conditions are included in newborn screening. Here I argue that the distinction between treatable and untreatable conditions is not a clear one and may be less useful in the future. I give examples of treatments that could be used even with "untreatable" conditions, envision a possible future of newborn screening, and suggest research and policy questions that need to be answered quickly so that screening can expand in a rational fashion.
authors.affiliation: RTI (Research Triangle Institute) International, USA.
authors.forename: Donald B
authors.initials: DB
authors.lastname: Bailey
mesh_terms: D003657:Decision Making; D005820:Genetic Testing; D006801:Humans; D007231:Infant, Newborn; D018447:Medical Futility; D015997:Neonatal Screening; D018570:Risk Assessment; D016896:Treatment Outcome; D014481:United States