Information flow after a positive newborn screening for cystic fibrosis

James Dillard, Audrey Tluczek

Research output: Contribution to journalArticle

16 Scopus citations

Abstract

Objectives: To provide a model of the information processes instigated by a positive result on a newborn screening for cystic fibrosis and to analyze their implications for future research. Method: We reviewed research conducted at Wisconsin and elsewhere. Results: We identified 6 distinct phases of information flow. Conclusion: Although continued attention to genetic counseling is clearly warranted, research on information flow after newborn screening should: 1) look beyond genetic counseling to include a variety of information sources including family, friends, and the Internet; 2) appreciate that families vary in their willingness to acquire cystic fibrosis-related information; and 3) should seek to better understand how this information moves through social networks.

Original languageEnglish (US)
JournalJournal of Pediatrics
Volume147
Issue number3 SUPPL.
DOIs
StatePublished - Sep 1 2005

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All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health

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