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Title: Attitudes and opinions of pregnant women who are not offered cystic fibrosis carrier screening.
Austin Authors: Ioannou, Liane;Massie, John;Lewis, Sharon;Collins, Veronica;McClaren, Belinda;Delatycki, Martin B 
Affiliation: Clinical Genetics, Austin Health, Heidelberg, Victoria, Australia
Bruce Lefroy Centre for Genetic Health Research, Murdoch Childrens Research Institute, Parkville, Victoria, Australia
Department of Medicine, Monash University, Clayton, Victoria, Australia
Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia
Andrology Australia, Monash Institute of Medical Research, Clayton, Victoria, Australia
Department of Respiratory Medicine, Royal Children's Hospital, Parkville, Victoria, Australia
Issue Date: 20-Nov-2013
Publication information: European Journal of Human Genetics : Ejhg 2013; 22(7): 859-65
Abstract: Cystic fibrosis (CF) is the most common severe, autosomal recessive disease among Caucasians. A population-based CF carrier screening programme was implemented in Victoria, Australia, in 2006. Carrier screening for CF is currently only offered in the private health system. The aim of this study was to determine the attitudes and opinions of pregnant women in the public health system, towards screening for CF. Pregnant women were recruited in the antenatal clinics of two public hospitals, and invited to participate in the study. Results of this study were compared with previous studies where screening for CF carrier status was offered. Of the participants (n=158), the majority were aged 25-34 years old (66.1%) and were Caucasian (45.8%). Compared with those who were offered screening (reported in previous studies) participants in the current study were younger, had a lower level of education and a lower income. Knowledge was significantly lower in those who were not offered screening compared with those who were offered screening. The majority of participants believe CF carrier screening should be offered in the public health system (80.5%) and almost half would have liked to receive an offer of screening during their current pregnancy (49.7%). In order for the programme to be equitable, screening for CF carrier status needs to be offered in both the public and private health system and ideally should be at no cost to the user.
Gov't Doc #: 24253861
DOI: 10.1038/ejhg.2013.267
Type: Journal Article
Subjects: Adult
Attitude to Health
Cystic Fibrosis.diagnosis.genetics
Genetic Testing
Socioeconomic Factors
Appears in Collections:Journal articles

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