CYSTIC-FIBROSIS CARRIER SCREENING IN 2 NEW-SOUTH-WALES COUNTRY TOWNS

Objective: To assess the feasibility of offering community testing for carrier status of Delta F508, a gene mutation associated with cystic fibrosis (CF). Design: Prospective pilot survey. Setting: General prac tice, the two main high schools and workplaces in the country towns of Young and Harden (combined population, 14940; with 7707 people aged 1 6-55 years) in New South Wales (NSW). Participants: Individuals aged 1 6 years and over. Main outcome measures: Number of Delta F508 carriers , test uptake rates, mode of learning about the testing, motivation fo r testing, retention of knowledge about CF, and test results and emoti onal effects of knowledge about carrier status. Results: We tested 610 people (8% of the population aged 16-55 years) and identified 47 carr iers (20% of the expected number in the 7707 people aged 16-55 years). Testing in schools had the highest uptake. Retention of knowledge was high; all Delta F508-positive individuals recalled their carrier stat us accurately. Anxiety was transient among carriers; over 90% of all r espondents felt they had made the right decision to be tested. Conclus ions: We recommend community testing for carrier detection and suggest targeting those with a family history of CF and girls aged over 16 in high schools.