Parents' and childrens’ views of wider genomic testing when used as part of newborn screening to identify cystic fibrosis

Parents' and childrens’ views of wider genomic testing when used as part of newborn screening to identify cystic fibrosis

•Participants favoured a sensitive approach to extended genetic testing for cystic fibrosis.•Personal experience deeply impacts perceived harms and benefits of screening.•Views of screening for affected individuals compared to the general public differed.•How to weight differing views during screeni...

Ausführliche Beschreibung

Gespeichert in:
Bibliographische Detailangaben
Veröffentlicht in:SSM. Qualitative research in health 2024-12, Vol.6, p.100455, Article 100455
Hauptverfasser: Chudleigh, Jane, Holder, Pru, Clark, Corinna, Moody, Louise, Cowlard, Jacqui, Allen, Lorna, Walter, Claire, Bonham, James R., Boardman, Felicity
Format: Artikel
Sprache:eng
Online-Zugang:Volltext
Tags: Tag hinzufügen
Keine Tags, Fügen Sie den ersten Tag hinzu!
Beschreibung
Zusammenfassung:•Participants favoured a sensitive approach to extended genetic testing for cystic fibrosis.•Personal experience deeply impacts perceived harms and benefits of screening.•Views of screening for affected individuals compared to the general public differed.•How to weight differing views during screening policy decisions needs consideration.
ISSN:2667-3215
2667-3215
DOI:10.1016/j.ssmqr.2024.100455