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

• Published in: European Journal of Human Genetics
• Main Authors: 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, Rachel V., Henneman, Lidewij, Rommers, Wieke, Bilardo, Caterina M., Rendeiro, Paula, Ribeiro, Maria Joao, Rocha, Jose, Lund, Ida Charlotte Bay, Petersen, Olav B., Becher, Naja, Vogel, Ida, Stefansdottir, Vigdis, Ingvarsdottir, Sigrun, Gottfredsdottir, Helga, Morris, Stephen, Chitty, Lyn S.
• Format: Article in Journal/Newspaper
• Language: English
• Published: 2016
• Subjects: DISCRETE-CHOICE EXPERIMENT; SYNDROME SCREENING-TESTS; CELL-FREE DNA; NONINVASIVE DIAGNOSIS; DECISION-MAKING; MATERNAL BLOOD; ANEUPLOIDY; NIPT; NETHERLANDS; ATTITUDES; Canada; Iceland
• Online Access: https://hdl.handle.net/11370/5b280ffe-0f63-4e80-a150-53b1b186cef5; https://research.rug.nl/en/publications/5b280ffe-0f63-4e80-a150-53b1b186cef5; https://doi.org/10.1038/ejhg.2015.249

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.