Information flow after a positive newborn screening for cystic fibrosis

James Price Dillard, Audrey Tluczek

Research output: Contribution to journalArticlepeer-review

18 Scopus citations


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)
Pages (from-to)S94-S97
JournalJournal of Pediatrics
Issue number3 SUPPL.
StatePublished - Sep 2005

All Science Journal Classification (ASJC) codes

  • Pediatrics, Perinatology, and Child Health


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