Newborn Screening for Developmental Disabilities: Reframing Presumptive Benefit
Donald B. Bailey, Jr 1*,Debra Skinner 2,Steven F. Warren 3
1 University of North Carolina at Chapel Hill 2 Univrsity of North Carolina at Chapel Hill 3 University of Kansas
* To whom correspondence should be addressed. E-mail: don_bailey{at}unc.edu.
Abstract
A fundamental tenet of newborn screening is proven benefit tothe infant. Many conditions causing developmental disabilitiesdo not currently meet this standard, usually construed as medicalbenefit that significantly improves child health. We arguefor expanding concepts of presumptive benefit. Newborn screeningprovides access to early intervention programs shown to positivelyinfluence children's development and support families. Consumerswant information about their children's health and their ownreproductive risk, and they have a broader view than policymakersof what constitutes a treatable disorder. Newborn screeningprovides other societal benefits that, in the absence of datashowing harm and with appropriate attention to ethical and legalissues, warrant consideration of an expansion of targets ofnewborn screening.
Key Words:
Disability, Health Policy, Screening
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