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Eur J Hum Genet. 2016 Jul;24(7):968-75. doi: 10.1038/ejhg.2015.249. Epub 2015 Nov 18.

Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals.

Author information

1
Genetics and Genomic Medicine, UCL Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
2
Department of Obstetrics & Gynecology, University of Calgary, Calgary, Alberta, Canada.
3
Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia, Canada.
4
Department of Obstetrics and Gynecology, McMaster University, Hamilton, Ontario, Canada.
5
Clinical Genetics Unit, Fondazione IRCCS CĂ  Granda Ospedale Maggiore Policlinico, Milano, Italy.
6
Department of Obstetrics and Gynaecology, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
7
Department of Obstetrics and Gynecology, Shaare Zedek Medical Centre, Jerusalem, Israel.
8
Fetal Medicine Unit, Department of Obstetrics and Gynaecology, Academic Medical Centre, Amsterdam, The Netherlands.
9
Department of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
10
Department of Obstetrics and Gynecology, Fetal Medicine Unit, University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands.
11
CGC Genetics, Porto, Portugal.
12
IINFACTS, CESPU, Porto, Portugal.
13
Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark.
14
Department of Obstetrics and Gynecology, Aarhus University Hospital, Aarhus, Denmark.
15
Department of Genetics and Molecular Medicine, Landspitali University Hospital, Reykjavik, Iceland.
16
Landspitali, National University Hospital, Reykjavik, Iceland.
17
Department of Midwifery, Faculty of Nursing, University of Iceland, Reykjavik, Iceland.
18
Research Department of Applied Health Research, University College London, London, UK.

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.

PMID:
26577044
PMCID:
PMC5070900
DOI:
10.1038/ejhg.2015.249
[Indexed for MEDLINE]
Free PMC Article

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