Questioning the consensus: managing carrier status results generated by newborn screening.
An apparent consensus governs the management of carrier status information generated incidentally through newborn screening: results cannot be withheld from parents. This normative stance encodes the focus on autonomy and distaste for paternalism that characterize the principles of clinical bioethics. However, newborn screening is a classic public health intervention in which paternalism may trump autonomy and through which parents are-in effect-required to receive carrier information. In truth, the disposition of carrier results generates competing moral infringements: to withhold information or require its possession. Resolving this dilemma demands consideration of a distinctive body of public health ethics to highlight the moral imperatives associated with the exercise of collective authority in the pursuit of public health benefits.
Miller
Fiona Alice
FA
Department of Health Policy, Faculty of Medicine, University of Toronto, Toronto, ON, Canada. fiona.miller@utoronto.ca
Robert
Jason Scott
JS
Hayeems
Robin Z
RZ
D032921:Consensus; D030881:Disclosure / Q000941:ethics*; D005820:Genetic Testing; D006801:Humans; D007231:Infant, Newborn; D015997:Neonatal Screening; D011634:Public Health / Q000941:ethics