Print Email Facebook Twitter To know or not to know, disclosure of a newborn carrier screening test result for cystic fibrosis Title To know or not to know, disclosure of a newborn carrier screening test result for cystic fibrosis Author Vernooij-van Langen, A.M.M. Reijntjens, S. van der Pal, S.M. Loeber, J.G. Dompeling, E. Dankert-Roelse, J.E. Publication year 2013 Abstract Purpose: Most newborn screening (NBS) strategies for Cystic Fibrosis (CF) also identify carriers. However, it is unclear if parents want to be informed about their child's carrier status or not. Methods: Focus group discussions with pregnant couples to explore their opinions about disclosure of a carrier result for CF of their newborn. Results: All (n = 30) wanted to be informed when newborn screening would show their newborn being a CF-carrier. Their main reason was the implication of this knowledge for further family planning. Other family members could be informed and children within the family could be tested. Parents stated they have the right to know, but others also expressed that the choice of not being informed should be offered as well. Conclusion: Most parents want to be informed when NBS for CF reveals that their child is a CF-carrier, but the choice of not being informed should also be offered. © 2013 Elsevier Masson SAS. Subject HumanCH - Child HealthBSS - Behavioural and Societal SciencesHealthy for LifeHealthHealthy LivingCarrierCystic fibrosisDNA analysisFocus groupNewborn screening To reference this document use: http://resolver.tudelft.nl/uuid:d8429548-3bf6-41a4-8bf8-689188028597 DOI https://doi.org/10.1016/j.ejmg.2013.01.006 TNO identifier 471475 ISSN 1769-7212 Source European Journal of Medical Genetics, 56 (4), 192-196 Bibliographical note Uit Repro record 470855 was dubbel Document type article Files To receive the publication files, please send an e-mail request to TNO Library.