Changing Perspectives on the Benefits of Newborn Screening

Autor/inn/en	Bailey, Donald B., Jr.; Beskow, Laura M.; Davis, Arlene M.; Skinner, Debra
Titel	Changing Perspectives on the Benefits of Newborn Screening
Quelle	In: Mental Retardation and Developmental Disabilities Research Reviews, 12 (2006) 4, S.270-279 (10 Seiten) PDF als Volltext Verfügbarkeit
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1080-4013
DOI	10.1002/mrdd.20119
Schlagwörter	Medical Services; Genetics; Scoring; Public Policy; Neonates; Research Needs; Screening Tests; Intervention; Outcomes of Treatment; Research Reports; Program Attitudes; Medical Care Evaluation; Attitude Change; Intellectual History + Suchen Sie Ihr Suchwort? Arzt; Humangenetik; Bewertung; Öffentliche Ordnung; Neugeborenes Kind; Forschungsbedarf; Screening-Verfahren; Research report; Forschungsbericht; Attitudinal change; Einstellungsänderung; Geistesgeschichte
Abstract	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.) (As Provided).
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Update	2017/4/10