ACCEPTANCE OF HOME AND CLINIC-BASED CYSTIC-FIBROSIS CARRIER EDUCATIONAND TESTING BY FIRST-DEGREE, 2ND-DEGREE, AND 3RD-DEGREE RELATIVES OF CYSTIC-FIBROSIS PATIENTS

We contacted and offered free cystic fibrosis (CF) carrier education a nd testing to the first, second, and third degree relatives of individ uals with CF followed at a large Southeastern US CF Clinic, Relatives were offered CF carrier education and testing either in their homes or in a genetic counseling clinic. Overall, of 514 relatives offered fre e CF carrier education and testing, 299 (58%) accepted. Significantly more (67%) of those offered education and testing in their homes accep ted than those offered education and testing in a genetic counseling c linic (45%). Regression analyses identified several factors, including education, income, gender, perceived chance of being a carrier, and p erceived chance of having a child who is a CF carrier, as predictors o f acceptance of education and testing in both home and clinic sites. A smaller set of factors was identified that predicted acceptance of ed ucation and testing unique to each site. Within the limits of this stu dy and its design, even when CF carrier testing is offered free of cha rge, including education and testing in the home, acceptance of educat ion and testing, while higher than in general population samples, is n ot universal among at-risk relatives. Several factors which may have c ontributed to the observations reported in this study are discussed. ( C) 1997 Wiley-Liss, Inc.