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The scope of prenatal diagnosis for women at increased risk for aneuploidies: Views and preferences of professionals and potential users

  • Antina de Jong
  • , Wybo J. Dondorp
  • , Anja Krumeich
  • , Julie Boonekamp
  • , Jan M. M. van Lith
  • , Guido M. W. R. de Wert
  • Maastricht University
  • Institute for Public Health Genomics (IPHG), Department of Genetics and Cell Biology, Research Institute GROW, University of Maastricht, Maastricht, The Netherlands;
  • CSG Centre for Society and the Life Sciences
  • Leiden University Medical Center

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

The increasing number of prenatal diagnostic tests in prenatal screening strategies, raises the question what tests to offer and why. This qualitative study investigated the views and preferences of professionals and potential users regarding four diagnostic test options for women at increased risk for common aneuploidies. Seven focus group sessions were conducted in The Netherlands between October 2009 and June 2010, with various categories of participants (n = 55): professionals engaged in prenatal testing and potential users of this testing (meaning pregnant women and parents of young children). Participants were invited to mention all pros and cons and their preferences regarding four hypothetical diagnostic test options, presented on vignettes: a standard offer of rapid aneuploidy detection, karyotyping or array comparative genomic hybridization, representing a narrow, traditional and broad test, respectively, and the option of individualised choice. Then, a semi-structured group interview was conducted. The data were analysed by the constant comparative method. Participants identified similar test-specific pros and cons but showed different preferences. Users' opinion on what test to offer as a general policy differed from what they would choose themselves. All participants agreed that in theory, users should be enabled to make an informed choice about what test to apply, but they disagreed about the feasibility of this ideal. Standard narrow testing was favoured for its limiting effects on emotional and organisational burdens; individualised choice was preferred for assuring women's decisive influence. The varying opinions reflect different views on what autonomy in the prenatal screening context means, suggest that a single standard test offer is inadequate and that differentiation will be needed. © 2012 Springer-Verlag Berlin Heidelberg.
Original languageEnglish
Pages (from-to)125-135
JournalJournal of community genetics
Volume4
Issue number1
DOIs
Publication statusPublished - Jan 2013
Externally publishedYes

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

  1. SDG 3 - Good Health and Well-being
    SDG 3 Good Health and Well-being

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