title: Information flow after a positive newborn screening for cystic fibrosis.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  We reviewed research conducted at Wisconsin and elsewhere.
  
  
  RESULTS
  We identified 6 distinct phases of information flow.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Communication Arts and Science, Pennsylvania State University, University Park, Pennsylvania 16802, USA.
authors.forename: James Price
authors.initials: JP
authors.lastname: Dillard
authors.forename: Audrey
authors.initials: A
authors.lastname: Tluczek
mesh_terms: D000328:Adult; D001007:Anxiety / Q000523:psychology; D002712:Chlorides / Q000032:analysis; D003142:Communication; D003550:Cystic Fibrosis / Q000175:diagnosis* / Q000235:genetics; D005260:Female; D033062:Friends; D005817:Genetic Counseling / Q000379:methods / Q000523:psychology; D006801:Humans; D007231:Infant, Newborn; D007255:Information Services; D020407:Internet; D008297:Male; D008402:Mass Media; D008960:Models, Psychological; D020380:Needs Assessment; D015997:Neonatal Screening / Q000523:psychology*; D010290:Parents / Q000193:education* / Q000523:psychology; D011368:Professional-Family Relations; D013315:Stress, Psychological / Q000523:psychology; D013542:Sweat / Q000737:chemistry; D013997:Time Factors; D014922:Wisconsin
chemical_list: D002712:Chlorides