Information flow after a positive newborn screening for cystic fibrosis

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.