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ERIC Number: EJ904065
Record Type: Journal
Publication Date: 2006
Pages: 10
Abstractor: As Provided
Reference Count: 33
ISBN: N/A
ISSN: ISSN-1080-4013
Changing Perspectives on the Benefits of Newborn Screening
Bailey, Donald B., Jr.; Beskow, Laura M.; Davis, Arlene M.; Skinner, Debra
Mental Retardation and Developmental Disabilities Research Reviews, v12 n4 p270-279 2006
The likelihood of benefit is fundamental to decision making about newborn screening. But benefit is construed in different ways by different stakeholders. This article begins with a review of benefit as considered historically by various expert panels and organizations. We then show how 78 conditions fared when experts recently rated them on benefit using a scoring system recommended by a task force of the American College of Medical Genetics. Finally, we analyze how benefit is reflected in the public comments submitted in response to the ACMG report. Results show that benefit has been and remains a core consideration for screening decisions. Historically the focus has been on improved physical health as a result of medical treatment; however, in only 4 of the 78 conditions rated does newborn screening prevent all negative consequences. In fact the majority of both core conditions (51.7%) and secondary targets (87.5%) recommended in the ACMG report were rated as having treatments that prevented only some negative consequences. All conditions rated had perceived benefits for family and society, but currently no conditions are screened on the basis of family or societal benefits alone. No agreed-upon threshold exists for what would be considered meaningful benefit, and stakeholder groups differ in their perceptions of benefit. We conclude by suggesting several key research studies needed to further inform public policy. (Contains 1 table.)
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Publication Type: Journal Articles; Reports - Evaluative
Education Level: Adult Education; Preschool Education
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A