title: Perceptions of population cystic fibrosis prenatal and preconception carrier screening among individuals with cystic fibrosis and their family members.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  RESULTS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Office of Population Health Genomics, Department of Health, Perth, Western Australia, Australia. suzy.maxwell@health.wa.gov.au
authors.forename: Susannah J
authors.initials: SJ
authors.lastname: Maxwell
authors.forename: Gaenor
authors.initials: G
authors.lastname: Kyne
authors.forename: Caron
authors.initials: C
authors.lastname: Molster
authors.forename: Nigel M
authors.initials: NM
authors.lastname: Barker
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Ormsby
authors.forename: Peter
authors.initials: P
authors.lastname: O'Leary
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D003550:Cystic Fibrosis / Q000175:diagnosis* / Q000235:genetics / Q000517:prevention & control / Q000523:psychology*; D005190:Family / Q000523:psychology*; D005260:Female; D006580:Genetic Carrier Screening; D005820:Genetic Testing / Q000523:psychology*; D019538:Health Care Surveys; D006801:Humans; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D015997:Neonatal Screening; D016742:Preconception Care; D011247:Pregnancy; D011295:Prenatal Care; D014904:Western Australia; D055815:Young Adult