Information flow after a positive newborn screening for cystic fibrosis.
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.
Dillard
James Price
JP
Department of Communication Arts and Science, Pennsylvania State University, University Park, Pennsylvania 16802, USA.
Tluczek
Audrey
A
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
D002712:Chlorides