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Factors that impact on women's decision-making around prenatal genomic tests
An international discrete choice survey
Buchanan, J., Hill, M., Vass, C. M., Hammond, J., Riedijk, S., Klapwijk, J. E., Harding, E., Lou, S., Vogel, I., Hui, L., Ingvoldstad-Malmgren, C., Soller, M. J., Ormond, K. E., Choolani, M., Zheng, Q., Chitty, L. S., & Lewis, C. (2022). Factors that impact on women's decision-making around prenatal genomic tests: An international discrete choice survey. Prenatal Diagnosis, 42(7), 934-946. Advance online publication. https://doi.org/10.1002/pd.6159
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.