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Saving Babies?The Consequences of Newborn Genetic Screening$
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Stefan Timmermans and Mara Buchbinder

Print publication date: 2012

Print ISBN-13: 9780226924977

Published to Chicago Scholarship Online: September 2013

DOI: 10.7208/chicago/9780226924991.001.0001

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PRINTED FROM CHICAGO SCHOLARSHIP ONLINE (www.chicago.universitypressscholarship.com). (c) Copyright University of Chicago Press, 2020. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in CHSO for personal use.date: 31 May 2020

The Expansion of Newborn Screening

The Expansion of Newborn Screening

(p.34) chapter one The Expansion of Newborn Screening
Saving Babies?

Stefan Timmermans

Mara Buchbinder

University of Chicago Press

This chapter introduces some of the stakeholders and the decisions that made the expansion of newborn screening possible. This expansion is defined as screening for additional disorders beyond the recommended panel. The reason for attending to this implementation process is that it offers a powerful benchmark for examining the work in the clinic. It is argued here that the recurring problems that families and geneticists encountered in the clinic were largely hardwired into the way the expansion of newborn screening was implemented. The setup of newborn screening affected which conditions could be screened, how quickly parents could be informed of the results, who would help them interpret and understand the results, who would pay for screening, and what the ensuing medical care would be like.

Keywords:   stakeholders, newborn screening, additional disorders, recommended panel, conditions

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