title: Evaluation of cystic fibrosis carrier screening programs according to genetic screening criteria.
abstract: Genetic screening programs should meet certain criteria before they can be introduced into the community. The aim of this study was to discuss pilot studies for cystic fibrosis (CF) carrier screening before and during pregnancy in the light of important genetic screening criteria. Overall, CF carrier screening meets the prerequisites that justify screening. However, more specific criteria for the development of screening programs were not always taken into consideration. Most project leaders concentrated on uptake as an important outcome, and less on informed decision-making. To further investigate the long-term psychological and social effects of genetic screening, continuous monitoring of screening projects is recommended.
authors.affiliation: Department of Clinical Genetics and Human Genetics, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Lidewij
authors.initials: L
authors.lastname: Henneman
authors.forename: Francis A M
authors.initials: FA
authors.lastname: Poppelaars
authors.forename: Leo P
authors.initials: LP
authors.lastname: ten Kate
mesh_terms: D003550:Cystic Fibrosis / Q000175:diagnosis* / Q000235:genetics; D005260:Female; D006580:Genetic Carrier Screening; D005820:Genetic Testing; D006801:Humans; D008297:Male; D010865:Pilot Projects; D011247:Pregnancy; D015397:Program Evaluation