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

Melissa Hill, Jo Ann Johnson, Sylvie Langlois, Hyun Lee, Stephanie Winsor, Brigid Dineley, Marisa Horniachek, Faustina Lalatta, Luisa Ronzoni, Angela N. Barrett, Henna V. Advani, Mahesh Choolani, Ron Rabinowitz, Eva Pajkrt, Rachèl V. van Schendel, Lidewij Henneman, Wieke Rommers, Caterina M. Bilardo, Paula Rendeiro, Maria João RibeiroJosé Rocha, Ida Charlotte Bay Lund, Olav B. Petersen, Naja Becher, Ida Vogel, Vigdis Stefánsdottir, Sigrun Ingvarsdottir, Helga Gottfredsdottir, Stephen Morris, Lyn S. Chitty

Research output: Contribution to journalArticle

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.European Journal of Human Genetics advance online publication, 18 November 2015; doi:10.1038/ejhg.2015.249.

Original languageEnglish
Pages (from-to)968-975
Number of pages8
JournalEuropean Journal of Human Genetics
Volume24
Issue number7
DOIs
Publication statusPublished - 2016

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Women's Health
Down Syndrome
Pregnant Women
Iceland
Portugal
Singapore
Medical Genetics
Spontaneous Abortion
Israel
Denmark
Netherlands
Italy
Canada
Publications
Guidelines
Safety
Health

ASJC Scopus subject areas

  • Genetics(clinical)
  • Genetics

Cite this

Preferences for prenatal tests for Down syndrome : an international comparison of the views of pregnant women and health professionals. / Hill, Melissa; Johnson, Jo Ann; Langlois, Sylvie; Lee, Hyun; Winsor, Stephanie; Dineley, Brigid; Horniachek, Marisa; Lalatta, Faustina; Ronzoni, Luisa; Barrett, Angela N.; Advani, Henna V.; Choolani, Mahesh; Rabinowitz, Ron; Pajkrt, Eva; van Schendel, Rachèl V.; Henneman, Lidewij; Rommers, Wieke; Bilardo, Caterina M.; Rendeiro, Paula; Ribeiro, Maria João; Rocha, José; Bay Lund, Ida Charlotte; Petersen, Olav B.; Becher, Naja; Vogel, Ida; Stefánsdottir, Vigdis; Ingvarsdottir, Sigrun; Gottfredsdottir, Helga; Morris, Stephen; Chitty, Lyn S.

In: European Journal of Human Genetics, Vol. 24, No. 7, 2016, p. 968-975.

Research output: Contribution to journalArticle

Hill, M, Johnson, JA, Langlois, S, Lee, H, Winsor, S, Dineley, B, Horniachek, M, Lalatta, F, Ronzoni, L, Barrett, AN, Advani, HV, Choolani, M, Rabinowitz, R, Pajkrt, E, van Schendel, RV, Henneman, L, Rommers, W, Bilardo, CM, Rendeiro, P, Ribeiro, MJ, Rocha, J, Bay Lund, IC, Petersen, OB, Becher, N, Vogel, I, Stefánsdottir, V, Ingvarsdottir, S, Gottfredsdottir, H, Morris, S & Chitty, LS 2016, 'Preferences for prenatal tests for Down syndrome: an international comparison of the views of pregnant women and health professionals', European Journal of Human Genetics, vol. 24, no. 7, pp. 968-975. https://doi.org/10.1038/ejhg.2015.249
Hill, Melissa ; Johnson, Jo Ann ; Langlois, Sylvie ; Lee, Hyun ; Winsor, Stephanie ; Dineley, Brigid ; Horniachek, Marisa ; Lalatta, Faustina ; Ronzoni, Luisa ; Barrett, Angela N. ; Advani, Henna V. ; Choolani, Mahesh ; Rabinowitz, Ron ; Pajkrt, Eva ; van Schendel, Rachèl V. ; Henneman, Lidewij ; Rommers, Wieke ; Bilardo, Caterina M. ; Rendeiro, Paula ; Ribeiro, Maria João ; Rocha, José ; Bay Lund, Ida Charlotte ; Petersen, Olav B. ; Becher, Naja ; Vogel, Ida ; Stefánsdottir, Vigdis ; Ingvarsdottir, Sigrun ; Gottfredsdottir, Helga ; Morris, Stephen ; Chitty, Lyn S. / Preferences for prenatal tests for Down syndrome : an international comparison of the views of pregnant women and health professionals. In: European Journal of Human Genetics. 2016 ; Vol. 24, No. 7. pp. 968-975.
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AU - Dineley, Brigid

AU - Horniachek, Marisa

AU - Lalatta, Faustina

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AU - Barrett, Angela N.

AU - Advani, Henna V.

AU - Choolani, Mahesh

AU - Rabinowitz, Ron

AU - Pajkrt, Eva

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AU - Henneman, Lidewij

AU - Rommers, Wieke

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AU - Rendeiro, Paula

AU - Ribeiro, Maria João

AU - Rocha, José

AU - Bay Lund, Ida Charlotte

AU - Petersen, Olav B.

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AU - Vogel, Ida

AU - Stefánsdottir, Vigdis

AU - Ingvarsdottir, Sigrun

AU - Gottfredsdottir, Helga

AU - Morris, Stephen

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