title: Carrier screening for cystic fibrosis in a prenatal setting.
abstract: Maternal prenatal cystic fibrosis (CF) screening was offered from September, 1997, to April, 1999, at the Ghent University Hospital, to couples undergoing prenatal diagnosis (amniocentesis) for reasons not related to CF. Fifteen minutes were devoted to explaining CF, CF screening, and the study protocol. The purpose was to assess the short- and long-term knowledge of CF, the attitude towards carrier screening, and carriership. A total of 314 couples entered the pilot study; 13 female CF carriers were identified. None of their partners carried an identifiable mutation. Our survey results show that information about CF and CF screening can be given effectively as part of antenatal care because most couples recalled important medical and genetic issues, valued the genetic test for CF, and seemed to cope well with the results. Risk estimates and actual numbers were more difficult to process and recall. From the small number of couples in which the woman alone was found to be a carrier, there was little or no evidence of marked distress.
authors.affiliation: Department of Medical Genetics, Ghent University Hospital, Belgium. delvauxi@hotmail.com
authors.forename: I
authors.initials: I
authors.lastname: Delvaux
authors.forename: A
authors.initials: A
authors.lastname: van Tongerloo
authors.forename: L
authors.initials: L
authors.lastname: Messiaen
authors.forename: C
authors.initials: C
authors.lastname: Van Loon
authors.forename: S
authors.initials: S
authors.lastname: De Bie
authors.forename: G
authors.initials: G
authors.lastname: Mortier
authors.forename: A
authors.initials: A
authors.lastname: De Paepe
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D003550:Cystic Fibrosis / Q000235:genetics* / Q000523:psychology; D004644:Emotions; D005260:Female; D005500:Follow-Up Studies; D006580:Genetic Carrier Screening; D005817:Genetic Counseling / Q000523:psychology; D005820:Genetic Testing / Q000523:psychology*; D005838:Genotype; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D010865:Pilot Projects; D011247:Pregnancy; D011295:Prenatal Care; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires