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Factors involved in the decision to decline prenatal screening with noninvasive prenatal testing (NIPT)
Authors:Lisanne van Prooyen Schuurman  Karuna van der Meij  Nicolien van Ravesteyn  Neeltje Crombag  Janneke Gitsels-van der Wal  Caroline Kooij  Linda Martin  Ingrid Peters  Marike Polak  Elsbeth van Vliet-Lachotzki  Robert-Jan Galjaard  Lidewij Henneman  Dutch NIPT Consortium
Institution:1. Department of Clinical Genetics, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands

Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands;2. Department of Human Genetics, Amsterdam UMC, location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands;3. Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands;4. Department of Development and Regeneration Cluster Woman and Child, Biomedical Sciences, KU Leuven, Leuven, Belgium;5. Department of Midwifery Science, AVAG, Amsterdam Public Health Research Institute, Amsterdam UMC, location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands;6. Midwifery and Ultrasound Centre “Verloskundigen Vida”, Amsterdam, The Netherlands;7. Department of Quality and Patient Care, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands;8. Department of Psychology, Education and Child Studies (DPECS), Erasmus University Rotterdam, Rotterdam, The Netherlands;9. VSOP—Patient Alliance for Rare and Genetic Diseases, Soest, The Netherlands;10. Department of Clinical Genetics, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands

Abstract:

Objective

To investigate factors involved in the decision to decline prenatal screening with noninvasive prenatal testing (NIPT).

Method

A questionnaire study was conducted among 219 pregnant women in the Netherlands who had declined prenatal screening with NIPT (TRIDENT-2 study). Respondents were selectively recruited from three hospitals and 19 midwifery practices, primarily located in or near socioeconomically disadvantaged neighborhoods. 44.3% of the respondents were of non-Western ethnic origin and 64.4% were religious.

Results

Most respondents (77.2%) found the decision to decline NIPT easy to make, and 59.8% had already made the decision before information about NIPT was offered. These respondents were more often religious, multigravida, and had adequate health literacy. The main reasons to decline NIPT were “I would never terminate my pregnancy” (57.1%) and “every child is welcome” (56.2%). For 16.9% of respondents, the out-of-pocket costs (175 euros) played a role in the decision, and the women in this group were more often nonreligious, primigravida, and had inadequate health literacy.

Conclusion

The primary factors involved in the decision to decline NIPT were related to personal values and beliefs, consistent with autonomous choice. Out-of-pocket costs of NIPT hinder equal access for some pregnant women.
Keywords:
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