Information flow after a positive newborn screening for cystic fibrosis - 21/08/11
Reprint requests: James P. Dillard, Department of Communication Arts and Science, Pennsylvania State University, University Park, PA 16802.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.
Le texte complet de cet article est disponible en PDF.Mots-clés : CF, IRT/DNA, NBS, UW, WCFNSP
Plan
| Supported by the National Institute on Diabetes, Digestive, and Kidney Diseases and by the National Institute for Human Genome Research (R01 DK34108-16). |
Vol 147 - N° 3S
P. S94-S97 - septembre 2005 Retour au numéro
Article précédent
- Challenges in Implementing a Successful Newborn Cystic Fibrosis Screening Program
- Anne Marie Comeau, Richard Parad, Robert Gerstle, Brian P. O’Sullivan, Henry L. Dorkin, Mark Dovey, Kenan Haver, Tom Martin, Roger B. Eaton
- Communications Systems and their Models: Massachusetts Parent Compliance with Recommended Specialty Care after Positive Cystic Fibrosis Newborn Screening Result
- Anne Marie Comeau, Richard Parad, Robert Gerstle, Brian P. O’Sullivan, Henry L. Dorkin, Mark Dovey, Kenan Haver, Tom Martin, Roger B. Eaton
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