TY - JOUR
T1 - Information flow after a positive newborn screening for cystic fibrosis
AU - Dillard, James Price
AU - Tluczek, Audrey
N1 - Funding Information:
Supported by the National Institute on Diabetes, Digestive, and Kidney Diseases and by the National Institute for Human Genome Research (R01 DK34108-16).
PY - 2005/9
Y1 - 2005/9
N2 - 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.
AB - 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.
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U2 - 10.1016/j.jpeds.2005.08.021
DO - 10.1016/j.jpeds.2005.08.021
M3 - Article
C2 - 16202792
AN - SCOPUS:25844469061
SN - 0022-3476
VL - 147
SP - S94-S97
JO - Journal of Pediatrics
JF - Journal of Pediatrics
IS - 3 SUPPL.
ER -