Decision-making about non-invasive prenatal testing: women’s moral reasoning in the absence of a risk of miscarriage in Germany

Reinsch, Stefan; König, Anika; Rehmann‐Sutter, Christoph

doi:10.1080/14636778.2020.1805305

Cited by 13 publications

(7 citation statements)

References 27 publications

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“…This lack of informed decision-making is echoed by several international studies, where women have reported to perceive NIPT as routine or necessity in pregnancy care. [10][11][12] It is recommended that pre-test counselling regarding NIPT informs patients that testing is elective and is comprised of objective information (eg accuracy of the test, incidental findings). 3,7,[13][14][15] Indeed, a recent Australian study of women highlighted the strongly held value of being provided with complete information about the pros and cons of NIPT.…”

Section: Introductionmentioning

confidence: 99%

“…However, pre‐ and post‐test counselling were identified as areas for improvement, with 31% of the sample indicating they were not informed of the consequences of a high‐risk result. This lack of informed decision‐making is echoed by several international studies, where women have reported to perceive NIPT as routine or necessity in pregnancy care 10–12 . It is recommended that pre‐test counselling regarding NIPT informs patients that testing is elective and is comprised of objective information (eg accuracy of the test, incidental findings) 3,7,13–15 .…”

Section: Introductionmentioning

confidence: 99%

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Experiences of non‐invasive prenatal screening: A survey study

Cornell

Armstrong

Fyfe

et al. 2021

Aust NZ J Obst Gynaeco

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Background: In Australia, using non-invasive prenatal testing (NIPT) to screen for fetal abnormalities is becoming more commonplace. However, there is a lack of standardised procedures surrounding pre-test counselling. This holds the potential for variability in pregnant people's experiences when undergoing NIPT, which subsequently may impact their ability to make informed decisions surrounding NIPT results. Aim: This study sought to characterise the experiences of Australian women undergoing NIPT, including perceptions of informed choice, counselling experiences and decision to undergo NIPT. Materials and Methods: Australian women who had been recently pregnant (n = 94) completed an online survey which assessed: their knowledge of and attitude toward NIPT; satisfaction with counselling; satisfaction with their decision; and decisional conflict to undergo NIPT. The survey also allowed participants to provide qualitative information about their counselling experience and reasons for undergoing NIPT.Results: Overall, participants had good knowledge of and positive attitudes toward NIPT, experienced low decisional conflict and were overall satisfied with their counselling experience and decision to undergo NIPT. However, some participants expressed dissatisfaction with the lack of information provided, and biased language, by counselling providers. The desire to be informed was the most frequent reason for undergoing NIPT. Conclusion:The provision of accurate and objective information in pre-test counselling is important to reduce decisional conflict and improve satisfaction with the decision to undergo NIPT. It is recommended counselling providers present pregnant people with neutral, objective, and accurate information at the time of pre-test counselling.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Experiences of non‐invasive prenatal screening: A survey study

Cornell

Armstrong

Fyfe

et al. 2021

Aust NZ J Obst Gynaeco

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“…Reports of such ominous introductions to NIPT stand in sharp contrast to anthropologists’ depictions of medical professionals in other countries recommending NIPT unequivocally or even prescribing the test without discussion, particularly to pregnant women over thirty‐five. In China, women are even expected to provide a compelling reason for refusing (Qiu 2019), while in Germany, the medical system has been reported to routinely schedule women for testing and encourage little prior ethical deliberation (Reinsch, König, and Rehmann‐Sutter 2021, 208).…”

Section: “Are You Really Sure You Want To Undergo Nipt?”mentioning

confidence: 99%

Virtuous Indecisiveness

2023

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Anthropological engagement with moralities and ethics assumes that people evaluate themselves and others according to their notions of good and bad; yet little is known about how people evaluate the quality of their deliberations. Such evaluations of the seriousness of ethical deliberations prevail in Japan’s genetic counseling for pregnant couples considering NIPT, a maternal blood test early in pregnancy that does not endanger the pregnancy but might lead to termination dilemmas. These deliberations are based on the idea that the ambivalence over whether to provide or undergo a potentially selective test is virtuous. This article examines how Japanese policymakers, medical professionals, genetic counselors, and pregnant couples make decisions within social settings that valorize indecisiveness. Ambivalence emerges as the cognitive skill of seeing complexity clearly. How people and their ethnographers evaluate the quality of ethical deliberations is essential to contemplate if we are to understand how people seek to lead a moral life. 摘要道徳と倫理への人類学的な関与は、人々が善悪の概念に従って自分自身や他人を評価することを前提としている。しかし、人々がその討議の良し悪しをどのように評価しているかについてはほとんど知られていない。このような倫理討議の深刻な評価は、妊娠を危険にさらすことはないが中絶のジレンマにつながる可能性のある妊娠初期の母体血液検査である NIPT を検討している妊娠中のカップルに対する日本の遺伝カウンセリングでは一般的である。これらの討議と躊躇いは、潜在的に選択的なテストを提供したり受けたりすることが道徳にかなっているのかどうかという両価性の考えに基づいている。この論文では、日本の政策立案者、医療専門家、遺伝カウンセラー、および妊娠中のカップルが、決断をためらうことに評価する社会環境の中でどのように決定を下すのかを調べる。両価性は、複雑さを明確に見る認知スキルとして現れる。人々とその民族誌学者が倫理的審理の質をどのように評価するのかは、人々がどのように道徳的な生活を送ろうとしているのかを理解し熟考することが不可欠だ。

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“…As in many other healthcare systems, diagnostic techniques (amniocentesis or CVS), are reimbursed where there are specific indications, such as maternal age (>35) or ultrasound findings (e.g. structural anomalies); ultrasound procedures are publicly reimbursed three times during the pregnancy [ 9 , 10 ].…”

Section: Current Context Of Prenatal Screening and Diagnosis In Germanymentioning

confidence: 99%

Non-invasive prenatal testing in Germany: a unique ethical and policy landscape

2022

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Non-invasive prenatal testing (NIPT) has been available commercially in Europe since approximately 2012. Currently, many countries are in the process of integrating NIPT into their publicly funded healthcare systems to screen for chromosomal aneuploidies such as trisomy 21 (Down syndrome), with a variety of implementation models. In 2019, the German Federal Joint Committee (G-BA), which plays a significant role in overseeing healthcare decisions in Germany, recommended that NIPT be reimbursed through public insurance. Following this recommendation, NIPT will be offered on a case-by-case basis, when a pregnant woman, after being counselled, makes an informed decision that the test is necessary in her personal situation. This model differs significantly from many other European countries, where NIPT is being implemented either as a first-tier screening offer available for all pregnancies, or a contingent screen for those with a high probability of foetal aneuploidy (with varying probability cut-offs). In this paper we examine how this unique approach to implementing NIPT in Germany is produced by an ethical and policy landscape resulting from a distinctive cultural and historical context with a significant influence on healthcare decision-making. Due in part to the specific legal and regulatory environment, as well as strong objections from various stakeholders, Germany did not implement NIPT as a first-tier screen. However, as Germany does not currently publicly fund as standard other forms of prenatal aneuploidy screening (such as combined first trimester screening), neither can it be implemented as a screen contingent on specific probability cut-offs. We discuss how German policy reflects the echoes of the past shaping approaches to new biotechnologies, and the implications of this unique model for implementing NIPT in a public healthcare system.

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Decision-making about non-invasive prenatal testing: women’s moral reasoning in the absence of a risk of miscarriage in Germany

Cited by 13 publications

References 27 publications

Experiences of non‐invasive prenatal screening: A survey study

Experiences of non‐invasive prenatal screening: A survey study

Virtuous Indecisiveness

Non-invasive prenatal testing in Germany: a unique ethical and policy landscape

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