James Price Dillard1, Audrey Tluczek. 1. Department of Communication Arts and Science, Pennsylvania State University, University Park, Pennsylvania 16802, USA.
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.
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.
Authors: Didu S T Kariyawasam; Arlene M D'Silva; Janine Vetsch; Claire E Wakefield; Veronica Wiley; Michelle A Farrar Journal: EClinicalMedicine Date: 2021-02-19