Changing perspectives on the benefits of newborn screening.

Changing perspectives on the benefits of newborn screening. Research Abstract Details 

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Changing perspectives on the benefits of newborn screening. Abstract Text:

Donald B Bailey,Laura M Beskow,Arlene M Davis,Debra Skinner,

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.

Changing perspectives on the benefits of newborn screening. Publishing Authors By Initials

DB Bailey,LM Beskow,AM Davis,D Skinner,

For similar geographic locations: americas: north america: united states research abstracts see: geographic locations: americas: north america: united states research

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Changing perspectives on the benefits of newborn screening. Journal Published:

PUBLICATION TYPE: Research Support, N.I.H., Extr

Journal: Mental retardation and developmental disabilities

VOLUME: 12

Page Numbers: 270-9

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ISSN: 1080-4013

DAY: 3

MONTH: 12

YEAR: 2006

Changing perspectives on the benefits of newborn screening. Information

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LANGUAGE: eng

NlmUniqueID: 9517974

Changing perspectives on the benefits of newborn screening. Keywords Mesh Terms:

KEYWORDS: United States

MESH TERMS: standards

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Grant and Affiliation Information for Changing perspectives on the benefits of newborn screening.

AFFILIATION: RTI International, Research Triangle Park, North Carolina 27709-2194, USA. dbailey@rti.org

Country: United States

AGENCY: United States NICHD

GRANT: R21-HD043616

ACRONYM: HD

MEDLINETA: Ment Retard Dev Disabil Res Re

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