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.
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Acknowledgements
The authors wish to thank all pregnant women, parents, midwives and clinicians who were willing to participate and share their views with us. We also thank the personnel of the Obstetrics Department at the Leiden University Medical Centre for their help in recruiting pregnant women.
Funding
This article is the result of a research project of the Centre for Society and the Life Sciences in The Netherlands, funded by the Netherlands Genomics Initiative (research project number: 70.1.061b).
Conflict of interest
The authors declare that they have no conflict of interest.
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de Jong, A., Dondorp, W.J., Krumeich, A. et al. The scope of prenatal diagnosis for women at increased risk for aneuploidies: views and preferences of professionals and potential users. J Community Genet 4, 125–135 (2013). https://doi.org/10.1007/s12687-012-0126-9
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DOI: https://doi.org/10.1007/s12687-012-0126-9