Questioning the Consensus: Managing Carrier Status Results Generated by Newborn Screening

Overview

Journal Am J Public Health

Specialty Public Health

Date 2008 Dec 9

PMID 19059852

Citations 16

Authors

Fiona Alice Miller

Jason Scott Robert

Robin Z Hayeems

Affiliations

Soon will be listed here.

Abstract

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.

Citing Articles

Understanding the psychological impact of identifying carrier status on young adults: A qualitative study exploring peer reactions.

Bowen E, Langston J, Fletcher H, Domek J, Ulph F J Genet Couns. 2024; 34(1):e1903.

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Health services use by children identified as heterozygous hemoglobinopathy mutation carriers via newborn screening.

Khangura S, Potter B, Davies C, Ducharme R, Bota A, Hawken S BMC Pediatr. 2021; 21(1):296.

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An Evaluation of Three Ways of Communicating Carrier Status Results to the Parents of Children in a Neonatal Sickle Cell Screening Programme.

Remus C, Stanislas A, Bouazza N, Gauthereau V, Polak M, Blanche S Front Pediatr. 2020; 8:300.

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Fostering caring relationships: Suggestions to rethink liberal perspectives on the ethics of newborn screening.

van der Burg S, Oerlemans A Bioethics. 2018; 32(3):171-183.

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Genomic newborn screening: public health policy considerations and recommendations.

Friedman J, Cornel M, Goldenberg A, Lister K, Senecal K, Vears D BMC Med Genomics. 2017; 10(1):9.

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