Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening.

Donald B. Bailey, F. Daniel Armstrong, Alex R. Kemper, Debra Skinner, Steven F. Warren

Research output: Contribution to journalArticle

21 Citations (Scopus)

Abstract

OBJECTIVE: As technology advances, newborn screening will be possible for conditions not screened today. With an expansion of screening, strategies will be needed to support family adaptation to unexpected and possibly uncertain genetic information provided shortly after birth. METHOD: Although candidate conditions for expanded newborn screening will typically be associated with increased morbidity or mortality, for most there is no proven medical treatment that must be implemented quickly. Many will have clinical features that gradually emerge and for which the severity of impact is not predictable. Parents will seek guidance on information, support, and treatment possibilities. This article summarizes issues evoked by expanded newborn screening and suggests strategies for supporting families of identified children. RESULTS: We propose four components necessary to support family adaptation to pre-symptomatic and "untreatable" conditions in an era of expanded newborn screening: (1) accurate and understandable information; (2) formal and informal support; (3) active surveillance; and (4) general and targeted interventions. We argue that no condition is "untreatable" and that a well-designed program of prevention and support has the potential to maximize benefit and minimize harm. CONCLUSIONS: Pediatric psychologists can play important roles in an era of expanded newborn screening by helping families understand genetic information, make informed decisions about genetic testing, and cope with the potential psychosocial consequences of genetic information.

Original languageEnglish
Pages (from-to)648-661
Number of pages14
JournalJournal of Pediatric Psychology
Volume34
Issue number6
StatePublished - Jul 1 2009
Externally publishedYes

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Newborn Infant
Genetic Testing
Parents
Parturition
Pediatrics
Psychology
Technology
Morbidity
Mortality
Therapeutics

ASJC Scopus subject areas

  • Developmental and Educational Psychology
  • Pediatrics, Perinatology, and Child Health

Cite this

Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening. / Bailey, Donald B.; Daniel Armstrong, F.; Kemper, Alex R.; Skinner, Debra; Warren, Steven F.

In: Journal of Pediatric Psychology, Vol. 34, No. 6, 01.07.2009, p. 648-661.

Research output: Contribution to journalArticle

Bailey, Donald B. ; Daniel Armstrong, F. ; Kemper, Alex R. ; Skinner, Debra ; Warren, Steven F. / Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening. In: Journal of Pediatric Psychology. 2009 ; Vol. 34, No. 6. pp. 648-661.
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