Moving Towards Routine Non-Invasive Prenatal Testing (NIPT): Challenges Related to Women’s Autonomy

Birko, Stanislav; Lemoine, Marie–Ève; Nguyen, Minh Thu; Ravitsky, Vardit

doi:10.21926/obm.genet.1802018

Cited by 15 publications

(4 citation statements)

References 53 publications

(78 reference statements)

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“…Nevertheless, it is important to consider the minority of Canadian women and couples who prefer not to screen for DS, and the concern that routinization of NIPT (i.e. the test being covered and offered routinely) may exacerbate current pressures to screen and/or terminate following a diagnosis, thereby restricting their reproductive autonomy [24–26]. Pregnant women from Ontario, the only province covering NIPT for high-risk pregnancies at the time of the study, were willing to pay significantly less than women from all other provinces.…”

Section: Discussionmentioning

confidence: 99%

The value of non-invasive prenatal testing: preferences of Canadian pregnant women, their partners, and health professionals regarding NIPT use and access

Birko

Ravitsky

Dupras

et al. 2019

BMC Pregnancy Childbirth

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BackgroundCanadian policies regarding the implementation and public coverage of non-invasive prenatal testing (NIPT) are heterogeneous and shifting, with NIPT being publicly covered for high-risk pregnancies in some provinces, but not others. Such a diverse and evolving policy landscape provides fertile ground for examining the preferences of pregnant women, their partners, and health professionals regarding the implementation and coverage of NIPT by the public healthcare system, as well as the factors influencing their preferences, which is what the present study does.MethodsIn this paper, we report the results of three-large scale Canadian surveys, in which 882 pregnant women, 395 partners of pregnant women, and 184 healthcare professionals participated.ResultsThe paper focuses on preferences regarding how and when NIPT should be used, as well as the factors influencing these preferences, and how coverage for NIPT should be provided. These are correlated with respondents’ levels of knowledge about Down syndrome and testing technologies and with their stated intended use of NIPT results.ConclusionSalient is the marked difference between the preferences of prospective parents and those of healthcare professionals, which has potential implications for Canadian policy regarding NIPT implementation and insurance coverage.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-2153-y) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

The value of non-invasive prenatal testing: preferences of Canadian pregnant women, their partners, and health professionals regarding NIPT use and access

Birko

Ravitsky

Dupras

et al. 2019

BMC Pregnancy Childbirth

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“…4 Scholars and advocacy groups have expressed concerns regarding the potential consequences of "routinizing" noninvasive prenatal testing. 5,6 These concerns include an erosion of free and informed consent, in addition to the possibility of increased rates of pregnancy termination, which could lead to decreased prevalence of certain genetic conditions and may lead to decreased medical and social support for people and families living with these conditions. [7][8][9][10] Thus, it is important to empirically assess the ethical and societal acceptability of noninvasive prenatal testing's clinical implementation and coverage through public funding, to determine that they reflect the interests, needs and values of Canadians.…”

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confidence: 99%

Benefits, challenges and ethical principles associated with implementing noninvasive prenatal testing: a Delphi study

Dupras

Birko

Affdal

et al. 2018

cmajo

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Background: Noninvasive prenatal testing is a recent technology that provides some genetic information about the fetus through the analysis of cell-free fetal DNA circulating in maternal blood. We aimed to identify the benefits, challenges and guiding ethical principles most relevant to the clinical integration of noninvasive prenatal testing in Canada, according to experts throughout the country. Methods: We conducted a 3-round Delphi study involving Canadian experts of contemporary discussions about the ethical and societal implications of prenatal testing and genomic technologies. In round 1, we asked participants to identify clinical benefits and challenges related to the implementation of noninvasive prenatal testing in Canada, and the ethical principles they think should guide it. In round 2, we asked participants to select the most important elements stated by their peers. In round 3, participants were informed of the aggregated results from round 2, and invited to revise or confirm their selection. Results: Round 1 had a participation rate of 20.2%, and involved 61 participants. Subsequent rounds 2 and 3 had retention rates of 95.1% (n = 58) and 84.5% (n = 49), respectively. Through these discussions, we identified 3 lists of benefits (n = 10), challenges (n = 27), and ethical principles (n = 16) prioritized by Canadian experts as being most relevant to the implementation of noninvasive prenatal testing in Canada. Interpretation: Although multiple and diverse potential issues were identified, Canadian experts agreed on 2 sets of requirements for the responsible implementation of noninvasive prenatal testing in Canada. Interdisciplinary appraisals may be instrumental to responsible policy-making related to the implementation of noninvasive prenatal testing in Canada.

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“…The use of prenatal diagnostic methods, such as ultrasound or amniocentesis, as a standard measure has been observed as an ongoing process in the last decades. The introduction of NIPT changes the ethical questions due to the medicalization of pregnancy and the normalization of prenatal quality control [ 42 ]. On the other hand, early detection of trisomies 13, 18, 21 or other genetic disorders is important to prepare expectant mothers and their partners to raise a child with special care needs or to take an informed decision about terminating the pregnancy.…”

Section: Discussionmentioning

confidence: 99%

Access to Prenatal Testing and Ethically Informed Counselling in Germany, Poland and Russia

Orzechowski

Timmermann

Woniak

et al. 2021

JPM

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The development of new methods in the field of prenatal testing leads to an expansion of information that needs to be provided to expectant mothers. The aim of this research is to explore opinions and attitudes of gynecologists in Germany, Poland and Russia towards access to prenatal testing and diagnostics in these countries. Semi-structured interviews were conducted with n = 18 gynecologists in Germany, Poland and Russia. The interviews were analyzed using the methods of content analysis and thematic analysis. Visible in all three countries is a connection of prenatal medicine with the politically and socially contentious issue of pregnancy termination. Respondents in Poland and Russia concentrated on the topic of inadequate resources. Quality of information for expectant mothers is an important point in all three countries. Only in Germany was the issue of language barriers in communication raised. With regard to non-invasive prenatal testing (NIPT) respondents in Germany focused on the ethical issues of routinization of testing; in Poland and Russia they concentrated on fair access to NIPT. Challenges in all three countries arise from structural factors such as imprecise and prohibitive regulations, lack of resources or organization of healthcare services. These should be addressed on a political and medico-ethical level.

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Moving Towards Routine Non-Invasive Prenatal Testing (NIPT): Challenges Related to Women’s Autonomy

Cited by 15 publications

References 53 publications

The value of non-invasive prenatal testing: preferences of Canadian pregnant women, their partners, and health professionals regarding NIPT use and access

The value of non-invasive prenatal testing: preferences of Canadian pregnant women, their partners, and health professionals regarding NIPT use and access

Benefits, challenges and ethical principles associated with implementing noninvasive prenatal testing: a Delphi study

Access to Prenatal Testing and Ethically Informed Counselling in Germany, Poland and Russia

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