WHAT YOUNG-PEOPLE THINK AND DO WHEN THE OPTION FOR CYSTIC-FIBROSIS CARRIER TESTING IS AVAILABLE

We report findings in phase II of a pilot study of cystic fibrosis (CF ) carrier screening/testing by mutation analysis. Phase I has been rep orted elsewhere. Eligible participants in phase II (n 815) were studen ts (15 to 17 years of age) in public high schools. An educational comp onent (exchange of information and discussion about common genetic dis orders including CF) preceded, by one week or more, voluntary particip ation in the screening component which required a blood sample. The up take rate for screening was 42%. Nine carriers (2pq=0.0260) were ident ified, all with the DELTAFS08 mutation; students were also tested for G551D, G542X, W1282X, and -549- mutations, but no carriers of these al leles were found. Carriers had positive views of the education and tes ting experiences. Persons identified as 'non-carriers' were also surve yed (n = 135, response rate 41%). As in phase I, the majority (83%) ag ain understood that a negative DNA test had not excluded them from pos sible carrier status. Students who participated in the informational c omponent but were not screened served here as controls in the follow u p survey (n = 208, response rate 53%). Their views were similar to tho se of the screened non-carriers, and similar also to those held by stu dents, adults, pregnant women, couples. and CF relatives in other comm unities.