Questioning the consensus: Managing carrier status results generated by newborn screening

Fiona Alice Miller, Jason Robert, Robin Z. Hayeems

Research output: Contribution to journalReview articlepeer-review

30 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)210-215
Number of pages6
JournalAmerican journal of public health
Issue number2
StatePublished - Feb 1 2009

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health


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