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Donald B. Bailey, Jr, PhD, Debra Skinner, PhD and Steven F. Warren, PhD

Don Bailey and Debra Skinner are with the University of North Carolina, Chapel Hill. Steve Warren is with the University of Kansas, Lawrence.

Correspondence: Requests for reprints should be sent to Don Bailey, FPG Child Development Institute, CB # 8180, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-8180 (e-mail: don_bailey{at}unc.edu).

A fundamental tenet of newborn screening is that screening should lead to a proven benefit for the infant. The standard is usually construed as medical benefit that significantly improves a child’s health. Screening for many conditions that cause developmental disabilities does not currently meet this standard.

We argue for expanding concepts of presumptive benefit. Newborn screening provides access to early intervention programs that are shown to positively influence child development and support families. Consumers want information about their children’s health and their own reproductive risk, and they have a broader view than policymakers of what constitutes a treatable disorder. Newborn screening provides other societal benefits that, in the absence of data showing harm and with appropriate attention to ethical and legal issues, warrant consideration of an expansion of targets for newborn screening.

This article has been cited by other articles:

				D. B. Bailey Jr, F. D. Armstrong, A. R. Kemper, D. Skinner, and S. F. Warren Supporting Family Adaptation to Presymptomatic and "Untreatable" Conditions in an Era of Expanded Newborn Screening J. Pediatr. Psychol., March 30, 2008; (2008) jsn032v1. [Abstract] [Full Text] [PDF]

				D. B. Bailey Jr, D. Skinner, A. M. Davis, I. Whitmarsh, and C. Powell Ethical, Legal, and Social Concerns About Expanded Newborn Screening: Fragile X Syndrome as a Prototype for Emerging Issues Pediatrics, March 1, 2008; 121(3): e693 - e704. [Abstract] [Full Text] [PDF]

				F. Tassone, R. Pan, K. Amiri, A. K. Taylor, and P. J. Hagerman A Rapid Polymerase Chain Reaction-Based Screening Method for Identification of All Expanded Alleles of the Fragile X (FMR1) Gene in Newborn and High-Risk Populations J. Mol. Diagn., January 1, 2008; 10(1): 43 - 49. [Abstract] [Full Text] [PDF]

				D. B. Bailey Jr, L. Nelson, K. Hebbeler, and D. Spiker Modeling the Impact of Formal and Informal Supports for Young Children With Disabilities and Their Families Pediatrics, October 1, 2007; 120(4): e992 - e1001. [Abstract] [Full Text] [PDF]

				B. A. Tarini The Current Revolution in Newborn Screening: New Technology, Old Controversies Arch Pediatr Adolesc Med, August 1, 2007; 161(8): 767 - 772. [Abstract] [Full Text] [PDF]

				R. R. Howell We Need Expanded Newborn Screening Pediatrics, May 1, 2006; 117(5): 1800 - 1805. [Full Text] [PDF]