title: When Rights Just Won't Do: Ethical Considerations When Making Decisions for Severely Disabled Newborns.
abstract: Children born with severe handicapping conditions, where survival and quality of survival is indeterminate, present special challenges for families and health-care professionals tasked with deciding the best courses of treatment and care. The case of Baby G presents an opportunity to compare the relative effectiveness of ethical versus rights theories in providing guidance about what obligations are owed to such children at bedside and how those obligations pertain to broader societal duties in a rights framework. We review common theories of determining the "best interests standard" of newborn decision-making and the priority of families to decide on behalf of their children. We then discuss what support the rights framework of the U.N. Convention on the Rights of the Child (CRC) might lend to the best implementation of clinical ethics decision-making. Finally, we conclude that the universal nature of rights theory does not provide the particular, specific guidance needed at the bedside of the critically ill infant.
authors.forename: D Micah
authors.initials: DM
authors.lastname: Hester
authors.forename: Cheryl D
authors.initials: CD
authors.lastname: Lew
authors.forename: Alissa
authors.initials: A
authors.lastname: Swota
mesh_terms: D026688:Bioethical Issues; D003657:Decision Making / Q000941:ethics*; D019988:Children with Disabilities; D028663:Ethical Theory; D006806:Human Rights; D006801:Humans; D062071:Infant, Extremely Premature; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal / Q000941:ethics*; D009014:Morals; D010372:Pediatrics / Q000941:ethics*; D011379:Prognosis; D012720:Severity of Illness Index; D012959:Socioeconomic Factors; D014480:United Nations