Noninvasive Prenatal Testing: Views of Canadian Pregnant Women and Their Partners Regarding Pressure and Societal Concerns

Ravitsky, Vardit; Birko, Stanislav; Clerc-Blain, Jessica Le; Haidar, Hazar; Affdal, Aliya; Lemoine, Marie–Ève; Dupras, Charles; Laberge, Anne‐Marie

doi:10.1080/23294515.2020.1829173

Cited by 12 publications

(5 citation statements)

References 50 publications

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“…This study also found that the majority of respondents in both countries did not feel societal pressure to accept NIPT. This finding was in line with earlier research in Canada and the Netherlands, indicating that most women do not feel pressured to test 34,35 . In our study, a comparable number of pregnant women in both countries considered raising a child with trisomy 21 as a burden, but more Dutch than Belgian women (24% vs. 12%) mentioned the reason “Wanting to be able to prepare myself for the birth of a child with trisomy 21, 18 and 13” as an important reason to opt for NIPT.…”

Section: Discussionsupporting

confidence: 91%

“…This finding was in line with earlier research in Canada and the Netherlands, indicating that most women do not feel pressured to test. 34,35 In our study, a comparable number of pregnant women in both countries considered raising a child with trisomy 21 as a burden, but more Dutch than Belgian women (24% vs. 12%) mentioned the reason "Wanting to be able to prepare myself for the birth of a child with trisomy 21, 18 and 13" as an important reason to opt for NIPT. This difference is remarkable and can be a result of the emphasis that is given to "reproductive autonomy" in Dutch counseling as compared to Belgium.…”

Section: Discussionmentioning

confidence: 48%

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A cross‐country comparison of pregnant women's decision‐making and perspectives when opting for non‐invasive prenatal testing in the Netherlands and Belgium

et al. 2023

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Background The Netherlands and Belgium have been among the first countries to offer non‐invasive prenatal testing (NIPT) as a first‐tier screening test. Despite similarities, differences exist in counseling modalities and test uptake. This study explored decision‐making and perspectives of pregnant women who opted for NIPT in both countries. Methods A questionnaire study was performed among pregnant women in the Netherlands (NL) (n = 587) and Belgium (BE) (n = 444) opting for NIPT, including measures on informed choice, personal and societal perspectives on trisomy 21, 18 and 13 and pregnancy termination. Results Differences between Dutch and Belgian women were shown in the level of informed choice (NL: 83% vs. BE: 59%, p < 0.001), intention to terminate the pregnancy in case of confirmed trisomy 21 (NL: 51% vs. BE: 62%, p = 0.003) and trisomy 13/18 (NL: 80% vs. BE: 73%, p = 0.020). More Belgian women considered trisomy 21 a severe condition (NL: 64% vs. BE: 81%, p < 0.001). Belgian women more frequently indicated that they believed parents are judged for having a child with trisomy 21 (BE: 42% vs. NL: 16%, p < 0.001) and were less positive about quality of care and support for children with trisomy 21 (BE: 23% vs. NL: 62%, p < 0.001). Conclusion Differences in women's decision‐making regarding NIPT and the conditions screened for may be influenced by counseling aspects and country‐specific societal and cultural contexts.

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Section: Discussionsupporting

confidence: 91%

Section: Discussionmentioning

confidence: 48%

A cross‐country comparison of pregnant women's decision‐making and perspectives when opting for non‐invasive prenatal testing in the Netherlands and Belgium

et al. 2023

View full text Add to dashboard Cite

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“…Similar to our results, a Canadian survey study found that the majority of pregnant women anticipated no personal (64%) or societal (62%) pressure to accept NIPT. In this study 24% of Canadian women anticipated feeling (some) societal pressure [ 37 ]. Both the social context and the framing of the offer of screening have been shown to influence women’s decision-making and uptake of screening.…”

Section: Discussionmentioning

confidence: 99%

“…Indirectly, these perceptions may cause some women to feel pressured to accept prenatal screening, impeding on their freedom to choose. In Canada, it was shown that over half of pregnant women were at least somewhat concerned that the routinization of NIPT might lead to a reduction in available resources for and have a negative impact on people with Down syndrome and their families [ 37 ]. Additionally, 70% of test-acceptors perceived it a great burden to raise a child with Down syndrome compared to 28.6% of test-decliners.…”

Section: Discussionmentioning

confidence: 99%

Routinization of prenatal screening with the non-invasive prenatal test: pregnant women’s perspectives

Meij¹,

Njio

Martin

et al. 2021

Eur J Hum Genet

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Due to the favorable test characteristics of the non-invasive prenatal test (NIPT) in the screening of fetal aneuploidy, there has been a strong and growing demand for implementation. In the Netherlands, NIPT is offered within a governmentally supported screening program as a first-tier screening test for all pregnant women (TRIDENT-2 study). However, concerns have been raised that the test’s favorable characteristics might lead to uncritical use, also referred to as routinization. This study addresses women’s perspectives on prenatal screening with NIPT by evaluating three aspects related to routinization: informed choice, freedom to choose and (personal and societal) perspectives on Down syndrome. Nationwide, a questionnaire was completed by 751 pregnant women after receiving counseling for prenatal screening. Of the respondents, the majority (75.5%) made an informed choice for prenatal screening as measured by the multidimensional measure of informed choice (MMIC). Education level and religious affiliation were significant predictors of informed choice. The main reason to accept screening was “seeking reassurance” (25.5%), and the main reason to decline was “every child is welcome” (30.6%). The majority of respondents (87.7%) did not perceive societal pressure to test. Differences between test-acceptors and test-decliners in personal and societal perspectives on Down syndrome were found. Our study revealed high rates of informed decision-making and perceived freedom to choose regarding fetal aneuploidy screening, suggesting that there is little reason for concern about routinization of NIPT based on the perspectives of Dutch pregnant women. Our findings highlight the importance of responsible implementation of NIPT within a national screening program.

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“…This interview refers to the risk that women could feel pressured to accept GW-NIPT because it is offered by the health professional. The question of whether women's reproductive autonomy could be compromised when offering NIPT as part of routine clinical care ('routinisation') is not new [29,30]. However, several studies have shown that women make informed choices based on their own values regardless of whether NIPT is offered in routine clinical care or not [31][32][33].…”

Section: Plos Onementioning

confidence: 99%

Health professionals and scientists’ views on genome-wide NIPT in the French public health system: Critical analysis of the ethical issues raised by prenatal genomics

Perrot

Horn²

2022

PLoS ONE

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In France, since January 2020, laboratories have started to make available genome-wide Non-Invasive Prenatal Testing (GW-NIPT) beyond the three common trisomies (T21, T13 and T18) at the same cost as standard NIPT. With the possible margins for interpretation of the legal framework and in the absence of clear and updated guidelines, health professionals are left with questions about which type of screening offer may be clinically responsible, morally appropriate, and, at the same time, respectful of women’s values and ability to make autonomous choices. The aim of this study is to provide an analysis and understanding of the challenging dimensions of clinical practices in the context of evolving scientific knowledge and techniques in prenatal genomics. In this article, we develop a critical analysis of the arguments and concerns that emerge around the offer of expanded NIPT and are discussed by health professionals and scientists. To achieve this, we conducted qualitative semi-structured interviews with 17 health professionals and scientists from September 2021 to February 2022 and a comprehensive literature review (regulatory, scientific, medical, institutional sources). The results of our empirical research highlight the importance of addressing ethical issues related to the differing quality of counselling, the complexity of achieving informed consent, and the avoidance of harm to pregnant women in the feedback of findings beyond T21, T18 and T13. If there is an increase in the provision of GW-NIPT within the French public health system, it will be essential to promote medical practices that respect reproductive choices of women, support their autonomous decision and their understanding of the limitations and uncertainties associated with GW screening. Further research is required to provide an insight into women’s perceptions in order to refine our analysis from the patients’ perspective.

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Noninvasive Prenatal Testing: Views of Canadian Pregnant Women and Their Partners Regarding Pressure and Societal Concerns

Cited by 12 publications

References 50 publications

A cross‐country comparison of pregnant women's decision‐making and perspectives when opting for non‐invasive prenatal testing in the Netherlands and Belgium

A cross‐country comparison of pregnant women's decision‐making and perspectives when opting for non‐invasive prenatal testing in the Netherlands and Belgium

Routinization of prenatal screening with the non-invasive prenatal test: pregnant women’s perspectives

Health professionals and scientists’ views on genome-wide NIPT in the French public health system: Critical analysis of the ethical issues raised by prenatal genomics

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