Factors that impact on women's decision-making around prenatal genomic tests: An international discrete choice survey

James Buchanan, Melissa Hill, Caroline M. Vass, Jennifer Hammond, Sam Riedijk, Jasmijn E. Klapwijk, Eleanor Harding, Stina Lou, Ida Vogel, Lisa Hui, Charlotta Ingvoldstad-Malmgren, Maria Johansson Soller, Kelly E. Ormond, Mahesh Choolani, Qian Zheng, Lyn S. Chitty, Celine Lewis*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

Objective: We conducted a survey-based discrete-choice experiment (DCE) to understand the test features that drive women's preferences for prenatal genomic testing, and explore variation across countries. Methods: Five test attributes were identified as being important for decision-making through a literature review, qualitative interviews and quantitative scoring exercise. Twelve scenarios were constructed in which respondents choose between two invasive tests or no test. Women from eight countries who delivered a baby in the previous 24 months completed a DCE presenting these scenarios. Choices were modeled using conditional logit regression analysis. Results: Surveys from 1239 women (Australia: n = 178; China: n = 179; Denmark: n = 88; Netherlands: n = 177; Singapore: n = 90; Sweden: n = 178; UK: n = 174; USA: n = 175) were analyzed. The key attribute affecting preferences was a test with the highest diagnostic yield (p < 0.01). Women preferred tests with short turnaround times (p < 0.01), and tests reporting variants of uncertain significance (VUS; p < 0.01) and secondary findings (SFs; p < 0.01). Several country-specific differences were identified, including time to get a result, who explains the result, and the return of VUS and SFs. Conclusion: Most women want maximum information from prenatal genomic tests, but our findings highlight country-based differences. Global consensus on how to return uncertain results is not necessarily realistic or desirable.

Original languageEnglish
Pages (from-to)934-946
Number of pages13
JournalPrenatal Diagnosis
Volume42
Issue number7
Early online date27 Apr 2022
DOIs
Publication statusPublished - Jun 2022

Bibliographical note

Funding Information:
We would like to thank Dynata for facilitating the survey and the parents around the globe who participated in the DCE. We would also like to thank the HPs who helped in the development of the attributes and levels. This work was supported by a Wellcome Trust Small Grant in Humanities and Social Science [211288/Z/18/Z]. Celine Lewis is funded by an NIHR Advanced Fellowship (NIHR300099). Lisa Hui was funded by an Australian National Health and Medical Research Early Career Fellowship. Lyn S. Chitty and MH are partially funded by the NIHR Biomedical Research Centre at Great Ormond Street Hospital. All research at Great Ormond Street Hospital NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the Wellcome Trust, the NHS, the NIHR, or the UK Department of Health. Ida Vogel and Stina Lou are funded by a grant from the Novo Nordisk Foundation no: NNF16OC0018772.

Funding Information:
We would like to thank Dynata for facilitating the survey and the parents around the globe who participated in the DCE. We would also like to thank the HPs who helped in the development of the attributes and levels. This work was supported by a Wellcome Trust Small Grant in Humanities and Social Science [211288/Z/18/Z]. Celine Lewis is funded by an NIHR Advanced Fellowship (NIHR300099). Lisa Hui was funded by an Australian National Health and Medical Research Early Career Fellowship. Lyn S. Chitty and MH are partially funded by the NIHR Biomedical Research Centre at Great Ormond Street Hospital. All research at Great Ormond Street Hospital NHS Foundation Trust and UCL Great Ormond Street Institute of Child Health is made possible by the NIHR Great Ormond Street Hospital Biomedical Research Centre. The views expressed are those of the author(s) and not necessarily those of the Wellcome Trust, the NHS, the NIHR, or the UK Department of Health. Ida Vogel and Stina Lou are funded by a grant from the Novo Nordisk Foundation no: NNF16OC0018772.

Publisher Copyright:
© 2022 The Authors. Prenatal Diagnosis published by John Wiley & Sons Ltd.

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