title: Legal and Ethical Considerations in Allowing Parental Exemptions From Newborn Critical Congenital Heart Disease (CCHD) Screening.
abstract: Critical congenital heart disease (CCHD) screening is rapidly becoming the standard of care in the United States after being added to the Recommended Uniform Screening Panel (RUSP) in 2011. Newborn screens typically do not require affirmative parental consent. In fact, most states allow parents to exempt their baby from receiving the required screen on the basis of religious or personally held beliefs. There are many ethical considerations implicated with allowing parents to exempt their child from newborn screening for CCHD. Considerations include the treatment of religious exemptions in our current legal system, as well as medical and ethical principles in relation to the rights of infants. Although there are significant benefits to screening newborns for CCHD, when a parent refuses for religious or personal beliefs, in the case of CCHD screening, the parental decision should stand.
authors.affiliation: a Children's National Heart Institute.
authors.forename: Lisa A
authors.initials: LA
authors.lastname: Hom
authors.affiliation: a Children's National Heart Institute.
authors.forename: Tomas J
authors.initials: TJ
authors.lastname: Silber
authors.affiliation: a Children's National Heart Institute.
authors.forename: Kathleen
authors.initials: K
authors.lastname: Ennis-Durstine
authors.affiliation: a Children's National Heart Institute.
authors.forename: Mary Anne
authors.initials: MA
authors.lastname: Hilliard
authors.affiliation: a Children's National Heart Institute.
authors.forename: Gerard R
authors.initials: GR
authors.lastname: Martin
mesh_terms: D003376:Counseling; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis*; D006801:Humans; D007229:Infant Welfare; D007231:Infant, Newborn; D007883:Legislation, Medical / Q000941:ethics / Q000639:trends; D008297:Male; D015997:Neonatal Screening / Q000941:ethics* / Q000295:instrumentation / Q000331:legislation & jurisprudence* / Q000379:methods; D010092:Oximetry / Q000941:ethics; D033282:Parental Consent / Q000941:ethics / Q000331:legislation & jurisprudence; D010290:Parents; D011237:Predictive Value of Tests; D012068:Religion and Medicine; D018570:Risk Assessment; D014481:United States
keywords: congenital heart disease; newborn screening; religious exemptions