An exploration of the attitudes and educational needs of people considering cystic fibrosis carrier screening in Victoria, Australia
20 children are born with cystic fibrosis (CF) each year in Victoria. In most cases there is no family history of CF, hence the importance of a CF carrier screening program. Evidence from national and international groups demonstrates that both providers and consumers have positive attitudes regarding genetic carrier screening for cystic fibrosis.
This study explores the attitudes of stakeholders to a cystic fibrosis genetic carrier screening program in Victoria, Australia.
Non-random, purposive sampling was used to recruit participants for focus groups of key stakeholders: preconception individuals, pregnant women, health professionals and cystic fibrosis experts. The discussions were audio taped and transcribed and thematic analysis was facilitated by the qualitative data management software, “nVivo”.
Participants expressed mixed attitudes towards genetic carrier screening for cystic fibrosis. Consumers’ attitudes were influenced by an awareness of family history, the opinions of health professionals and their partners and, their own values and beliefs. Providers’ attitudes were influenced by time constraints in practice and concerns for the psychosocial outcomes of patients.
Participants discussed the different settings in which screening may be offered and were most strongly in support of preconception screening however, the practical barriers to offering screening at this time were recognised. Participants proposed that screening be offered when people are “ready” to be screened, ie offering screening at different life stages.
Whilst attitudes to a genetic carrier screening program for CF are mixed, community interest is growing. Consultation with stakeholders is vital to inform the development and implementation of successful genetic carrier screening programs.