Perceptions of population cystic fibrosis prenatal and preconception carrier screening among individuals with cystic fibrosis and their family members

• Published in: Genetic testing and molecular biomarkers Vol. 15; no. 3; p. 159
• Main Authors: Maxwell, Susannah J, Kyne, Gaenor, Molster, Caron, Barker, Nigel M, Ormsby, Jacqueline, O'Leary, Peter
• Format: Journal Article
• Language: English
• Published: United States 01.03.2011
• Subjects: Adolescent; Adult; Aged; Aged, 80 and over; Attitude to Health; Cystic Fibrosis - diagnosis; Cystic Fibrosis - genetics; Cystic Fibrosis - prevention & control; Cystic Fibrosis - psychology; Family - psychology; Female; Genetic Carrier Screening; Genetic Testing - psychology; Health Care Surveys; Humans; Infant, Newborn; Male; Middle Aged; Neonatal Screening; Preconception Care; Pregnancy; Prenatal Care; Western Australia; Young Adult
• ISSN: 1945-0257
• DOI: 10.1089/gtmb.2010.0121

Our study aimed to quantitatively explore the perceptions of individuals with cystic fibrosis (CF) and their family members toward population prenatal and preconception CF carrier screening, including perceived benefits, concerns, and the acceptability of offering screening. In November 2009, 258 members of the Cystic Fibrosis Association of Western Australia were invited via an e-mail newsletter to participate in a survey, with a link to an online survey tool. A further 246 members without e-mail access were mailed a paper copy of the survey. Overall, we found the majority of individuals with CF (n=27) and their families (n=122) had positive views of population CF carrier screening. However, the small number of individuals with CF represented in the study limits the interpretation of these data. From a public policy perspective, our findings overall suggest that in principle the views of family members are not a barrier to the introduction of population CF carrier screening. The views of individuals with CF warrant further investigation. Data such as ours should be used with other sources of information, such as economic evaluations and the perceptions of the general public, geneticists, and other medical practitioners to inform decisions regarding screening within the public health system.