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Medicine and Social JusticeEssays on the Distribution of Health Care$
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Rosamond Rhodes, Margaret Battin, and Anita Silvers

Print publication date: 2012

Print ISBN-13: 9780199744206

Published to Oxford Scholarship Online: May 2015

DOI: 10.1093/acprof:osobl/9780199744206.001.0001

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Expanded Newborn Screening

Expanded Newborn Screening

Contemporary Challenges to the Parens Patriae Doctrine and the Use of Public Resources

(p.475) 38 Expanded Newborn Screening
Medicine and Social Justice

Jeffrey R. Botkin

Rebecca A. Anderson

Erin Rothwell

Oxford University Press

This chapter focuses on the practice of newborn bloodspot screening, with particular emphasis on the challenges to the parens patriae doctrine and the allocation of public resources for such endeavor. Nearly every newborn in the United States is screened for certain genetic diseases in order to identify children with serious and treatable conditions that respond to timely treatment. However, some programs screen for conditions for which no current treatment exists, and in some states, even when effective treatment is available, there is no provision for affected children to receive the necessary care. A further problem of justice is that parents are not adequately informed about what is being done and their consent for screening is rarely obtained. The chapter recommends changes in how these program are administered that would promote justice and improve transparency and trust in the health care system.

Keywords:   newborn bloodspot screening, parens patriae doctrine, resource allocation, public resources, genetic diseases, children, justice, parents, transparency, health care

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