title: Adolescents' attitude towards carrier testing for cystic fibrosis and its relative stability over time.
abstract: Attitudes towards cystic fibrosis (CF) carrier testing, benefits of and barriers to having such a test were assessed within a randomly selected group of high school students in Flanders, after they had received sufficient basic information about the nature and the mode of inheritance of CF. Attitudes towards carrier testing for CF were not negative, but the majority preferred to wait to have a test. This result changed little after 6 months. A hypothetical testing offer from the Medical School Health Service elicited positive answers from nearly two thirds, suggesting that such an offer may function as a cue to action. Nevertheless, the appropriateness of such an offer may be questioned, considering the disadvantages of testing adolescents. Concern about a negative impact of the carrier status on self-image was reported by 10% of the students. These findings suggest that education about genetics is not only a prerequisite for allowing more informed decisions about CF carrier testing, but also for avoiding negative psychosocial effects of such a test.
authors.affiliation: Center for Human Genetics, University Hospital, Leuven, Belgium.
authors.forename: M
authors.initials: M
authors.lastname: Welkenhuysen
authors.forename: G
authors.initials: G
authors.lastname: Evers-Kiebooms
authors.forename: M
authors.initials: M
authors.lastname: Decruyenaere
authors.forename: H
authors.initials: H
authors.lastname: Van den Berghe
authors.forename: J
authors.initials: J
authors.lastname: Bande-Knops
authors.forename: V
authors.initials: V
authors.lastname: Van Gerven
mesh_terms: D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D001530:Belgium; D003550:Cystic Fibrosis / Q000235:genetics*; D030881:Disclosure; D005260:Female; D006580:Genetic Carrier Screening; D005820:Genetic Testing; D006801:Humans; D007258:Informed Consent; D008297:Male; D018570:Risk Assessment; D011795:Surveys and Questionnaires