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Attitudes of high school students toward carrier screening and prenatal diagnosis of cystic fibrosis
Authors:Sharon J Durfy  Andrea Page  Barry Eng  Patricia L Chang  John S Waye
Institution:(1) DNA Diagnostic Laboratory, McMaster University Medical Centre, Hamilton, Ontario, Canada;(2) Waterdown District High School, Waterdown, Ontario, Canada;(3) Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada;(4) Department of Medical History and Ethics, School of Medicine, SB-20, University of Washington, 98195 Seattle, Washington
Abstract:The identification of the common mutations of the cystic fibrosis (CF) transmembrane conductance regulator gene has made it feasible to consider population-based CF carrier screening. However, the demand for such programs will depend largely on the attitudes and perceptions of the general public toward genetic testing. As part of a high school science project, we initiated studies to determine the attitudes of high school students toward carrier screening for CF and other genetic disorders. From a class of 120 biology students, 101 consented to participate in the study. Most of the students were of European ancestry and there were no known family histories of CF. Buccal swabs were obtained for PCR amplification and heteroduplex detection of the most common CF mutation (DeltaF508). The students and their corresponding buccal swabs were assigned random numbers and the results were kept confidential unless the student requested his/her test result. A questionnaire was used to assess the students' attitudes toward carrier screening and prenatal diagnosis. This questionnaire was given both before testing and after the class was informed that three individuals were carriers of the DeltaF508 mutation. Overall, the data indicate that high school students are receptive to the concepts of carrier screening and prenatal diagnosis. However, their attitudes changed considerably when informed of the possibility that they might actually be a DeltaF508 carrier, with marked increases in the level of indecision. At the conclusion of the study, very few students (5/101) requested information about their DeltaF508 carrier status.
Keywords:cystic fibrosis  carrier testing  attitudes  high school students
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