title: Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals.
abstract: Non-invasive prenatal testing is increasingly available worldwide and stakeholder viewpoints are essential to guide implementation. Here we compare the preferences of women and health professionals from nine different countries towards attributes of non-invasive and invasive prenatal tests for Down syndrome. A discrete choice experiment was used to obtain participants' stated preference for prenatal tests that varied according to four attributes: accuracy, time of test, risk of miscarriage, and type of information. Pregnant women and health professionals were recruited from Canada, Denmark, Iceland, Israel, Italy, the Netherlands, Portugal, Singapore, and the United Kingdom. A total of 2666 women's and 1245 health professionals' questionnaires were included in the analysis. Differences in preferences were seen between women and health professionals within and between countries. Overall, women placed greater emphasis on test safety and comprehensive information than health professionals, who emphasised accuracy and early testing. Differences between women's and health professionals' preferences are marked between countries. Varied approaches to implementation and service delivery are therefore needed and individual countries should develop guidelines appropriate for their own social and screening contexts.
authors.affiliation: Genetics and Genomic Medicine, UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
authors.forename: Melissa
authors.initials: M
authors.lastname: Hill
authors.affiliation: Department of Obstetrics & Gynecology, University of Calgary, Calgary, Alberta, Canada.
authors.forename: Jo-Ann
authors.initials: JA
authors.lastname: Johnson
authors.affiliation: Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.
authors.forename: Sylvie
authors.initials: S
authors.lastname: Langlois
authors.affiliation: Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.
authors.forename: Hyun
authors.initials: H
authors.lastname: Lee
authors.affiliation: Department of Obstetrics and Gynecology, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Winsor
authors.affiliation: Department of Obstetrics and Gynecology, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Brigid
authors.initials: B
authors.lastname: Dineley
authors.affiliation: Department of Obstetrics and Gynecology, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Marisa
authors.initials: M
authors.lastname: Horniachek
authors.affiliation: Clinical Genetics Unit, Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico, Milano, Italy.
authors.forename: Faustina
authors.initials: F
authors.lastname: Lalatta
authors.affiliation: Clinical Genetics Unit, Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico, Milano, Italy.
authors.forename: Luisa
authors.initials: L
authors.lastname: Ronzoni
authors.affiliation: Department of Obstetrics and Gynaecology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
authors.forename: Angela N
authors.initials: AN
authors.lastname: Barrett
authors.affiliation: Department of Obstetrics and Gynaecology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
authors.forename: Henna V
authors.initials: HV
authors.lastname: Advani
authors.affiliation: Department of Obstetrics and Gynaecology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
authors.forename: Mahesh
authors.initials: M
authors.lastname: Choolani
authors.affiliation: Department of Obstetrics and Gynecology, Shaare Zedek Medical Centre, Jerusalem, Israel.
authors.forename: Ron
authors.initials: R
authors.lastname: Rabinowitz
authors.affiliation: Fetal Medicine Unit, Department of Obstetrics and Gynaecology, Academic Medical Centre, Amsterdam, The Netherlands.
authors.forename: Eva
authors.initials: E
authors.lastname: Pajkrt
authors.affiliation: Department of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Rachèl V
authors.initials: RV
authors.lastname: van Schendel
authors.affiliation: Department of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Lidewij
authors.initials: L
authors.lastname: Henneman
authors.affiliation: Department of Obstetrics and Gynecology, Fetal Medicine Unit, University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands.
authors.forename: Wieke
authors.initials: W
authors.lastname: Rommers
authors.affiliation: Department of Obstetrics and Gynecology, Fetal Medicine Unit, University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands.
authors.forename: Caterina M
authors.initials: CM
authors.lastname: Bilardo
authors.affiliation: CGC Genetics, Porto, Portugal.
authors.forename: Paula
authors.initials: P
authors.lastname: Rendeiro
authors.affiliation: IINFACTS, CESPU, Porto, Portugal.
authors.forename: Maria João
authors.initials: MJ
authors.lastname: Ribeiro
authors.affiliation: CGC Genetics, Porto, Portugal.|IINFACTS, CESPU, Porto, Portugal.
authors.forename: José
authors.initials: J
authors.lastname: Rocha
authors.affiliation: Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark.
authors.forename: Ida Charlotte
authors.initials: IC
authors.lastname: Bay Lund
authors.affiliation: Department of Obstetrics and Gynecology, Aarhus University Hospital, Aarhus, Denmark.
authors.forename: Olav B
authors.initials: OB
authors.lastname: Petersen
authors.affiliation: Department of Obstetrics and Gynecology, Aarhus University Hospital, Aarhus, Denmark.
authors.forename: Naja
authors.initials: N
authors.lastname: Becher
authors.affiliation: Department of Obstetrics and Gynecology, Aarhus University Hospital, Aarhus, Denmark.
authors.forename: Ida
authors.initials: I
authors.lastname: Vogel
authors.affiliation: Department of Genetics and Molecular Medicine, Landspitali University Hospital, Reykjavik, Iceland.
authors.forename: Vigdis
authors.initials: V
authors.lastname: Stefánsdottir
authors.affiliation: Landspitali, National University Hospital, Reykjavik, Iceland.|Department of Midwifery, Faculty of Nursing, University of Iceland, Reykjavik, Iceland.
authors.forename: Sigrun
authors.initials: S
authors.lastname: Ingvarsdottir
authors.affiliation: Landspitali, National University Hospital, Reykjavik, Iceland.|Department of Midwifery, Faculty of Nursing, University of Iceland, Reykjavik, Iceland.
authors.forename: Helga
authors.initials: H
authors.lastname: Gottfredsdottir
authors.affiliation: Research Department of Applied Health Research, University College London, London, UK.
authors.forename: Stephen
authors.initials: S
authors.lastname: Morris
authors.affiliation: Genetics and Genomic Medicine, UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
authors.forename: Lyn S
authors.initials: LS
authors.lastname: Chitty
mesh_terms: D002170:Canada; D004314:Down Syndrome / Q000175:diagnosis* / Q000235:genetics; D005062:European Union; D005260:Female; D005820:Genetic Testing / Q000941:ethics; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000523:psychology*; D006801:Humans; D007557:Israel; D008297:Male; D011247:Pregnancy; D037841:Pregnant People / Q000523:psychology*; D011296:Prenatal Diagnosis / Q000523:psychology*; D012846:Singapore