Expanded Carrier Screening in Flanders (Belgium): An Online Survey on the Perspectives of Nonpregnant Reproductive-Aged Women

References

• Bell CJ , DinwiddieDL , MillerNAet al. Carrier testing for severe childhood recessive diseases by next-generation sequencing. Sci. Transl. Med.3(65), 65ra64 (2011).
   Web of Science ®Google Scholar
• Ropers HH . On the future of genetic risk assessment. J. Community Genet.3(3), 229–236 (2012).
   PubMedGoogle Scholar
• Edwards JG , FeldmanG , GoldbergJet al. Expanded carrier screening in reproductive medicine-points to consider: a joint statement of the American College of Medical Genetics and Genomics, American College of Obstetricians and Gynecologists, National Society of Genetic Counselors, Perinatal Quality Foundation, and Society for Maternal-Fetal Medicine. Obstet. Gynecol.125(3), 653–662 (2015).
   PubMed Web of Science ®Google Scholar
• Chokoshvili D , VearsD , BorryP. Expanded carrier screening for monogenic disorders: where are we now?Prenat. Diagn.38(1), 59–66 (2018).
   PubMed Web of Science ®Google Scholar
• Superior Health Council of Belgium . Advisory Report of the Superior Health Council No. 9240: Expanded Carrier Screening in a Reproductive Context. Towards a Responsible Implementation in the Healthcare System (2017). https://www.health.belgium.be/sites/default/files/uploads/fields/fpshealth_theme_file/shc_advisoryreport_9240_carrier_screening.pdf
   Google Scholar
• Van Steijvoort E , ChokoshviliD , WCJet al. Interest in expanded carrier screening among individuals and couples in the general population: systematic review of the literature. Hum. Reprod. Update26(3), 335–355 (2020).
   PubMed Web of Science ®Google Scholar
• Charafeddine R , BraekmanE , GisleL , DrieskensS. Gezondheidsenquête 2018: Seksuele gezondheid. Brussel, België. Sciensano Rapportnummer D/2019/14.440/60 (2018). https://www.sciensano.be/sites/default/files/rh_rapport2_his2018_nl_v3.pdf
   Google Scholar
• Chokoshvili D , BelmansC , PonceletRet al. Public views on genetics and genetic testing: a survey of the general public in Belgium. Genet. Test Mol. Biomarkers21(3), 195–201 (2017).
   PubMed Web of Science ®Google Scholar
• Ekstrand Ragnar M , TydenT , KihlbomU , LarssonM. Swedish parents’ interest in preconception genetic carrier screening. Ups. J. Med. Sci.121(4), 289–294 (2016).
   PubMed Web of Science ®Google Scholar
• Ong R , HowtingD , ReaAet al. Measuring the impact of genetic knowledge on intentions and attitudes of the community towards expanded preconception carrier screening. J. Med. Genet.55(11), 744–752 (2018).
   PubMed Web of Science ®Google Scholar
• Plantinga M , BirnieE , AbbottKMet al. Population-based preconception carrier screening: how potential users from the general population view a test for 50 serious diseases. Eur. J. Hum. Genet.24(10), 1417–1423 (2016).
   PubMed Web of Science ®Google Scholar
• Lakeman P , PlassAM , HennemanL , BezemerPD , CornelMC , TenKate LP. Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation?Eur. J. Hum. Genet.17(8), 999–1009 (2009).
   PubMed Web of Science ®Google Scholar
• Mathijssen IB , HoltkampKCA , OttenheimCPEet al. Preconception carrier screening for multiple disorders: evaluation of a screening offer in a Dutch founder population. Eur. J. Hum. Genet.26(2), 166–175 (2018).
   PubMed Web of Science ®Google Scholar
• Nijmeijer SCM , ConijnT , LakemanP , HennemanL , WijburgFA , HavermanL. Attitudes of the general population towards preconception expanded carrier screening for autosomal recessive disorders including inborn errors of metabolism. Mol. Genet. Metab.126(1), 14–22 (2019).
   PubMed Web of Science ®Google Scholar
• Van Den Berg M , TimmermansDR , TenKate LP , Van VugtJM , VanDer Wal G. Are pregnant women making informed choices about prenatal screening?Genet. Med.7(5), 332–338 (2005).
   PubMed Web of Science ®Google Scholar
• Lewis C , HillM , SkirtonH , ChittyLS. Development and validation of a measure of informed choice for women undergoing non-invasive prenatal testing for aneuploidy. Eur. J. Hum. Genet.24(6), 809–816 (2016).
   PubMed Web of Science ®Google Scholar
• Tavakol M , DennickR. Making sense of Cronbach’s alpha. Int. J. Med. Educ.2, 53–55 (2011).
   PubMedGoogle Scholar
• Kauffman TL , IrvingSA , LeoMCet al. The NextGen Study: patient motivation for participation in genome sequencing for carrier status. Mol. Genet. Genomic Med.5(5), 508–515 (2017).
   PubMed Web of Science ®Google Scholar
• Henneman L , BorryP , ChokoshviliDet al. Responsible implementation of expanded carrier screening. Eur. J. Hum. Genet.25(11), 1291 (2017).
   PubMed Web of Science ®Google Scholar
• Wilfond BS , KauffmanTL , JarvikGPet al. Lessons learned from a study of genomics-based carrier screening for reproductive decision making. Health Aff. (Millwood)37(5), 809–816 (2018).
   PubMed Web of Science ®Google Scholar
• Kraft SA , McmullenCK , PorterKMet al. Patient perspectives on the use of categories of conditions for decision making about genomic carrier screening results. Am. J. Med. Genet.176(2), 376–385 (2018).
   PubMed Web of Science ®Google Scholar
• Henneman L , TenKate LP. Preconceptional couple screening for cystic fibrosis carrier status: couples prefer full disclosure of test results. J. Med. Genet.39(5), E26 (2002).
   PubMedGoogle Scholar
• Henneman L , TimmermansDRM , VanDer Wal G. Public experiences, knowledge and expectations about medical genetics and the use of genetic information. Public Health Genomics7(1), 33–43 (2004).
   Google Scholar
• Holtkamp KCA , MathijssenIB , LakemanPet al. Factors for successful implementation of population-based expanded carrier screening: learning from existing initiatives. Eur. J. Public Health27(2), 372–377 (2017).
   PubMed Web of Science ®Google Scholar