Attitudes toward non‐invasive prenatal diagnosis among pregnant women and health professionals in Japan

Yotsumoto, Junko; Sekizawa, Akihiko; Koide, Kazunori; Purwosunu, Yuditiya; Ichizuka, Kiyotake; Matsuoka, Ryu; Kawame, Hiroshi; Okai, Takashi

doi:10.1002/pd.3886

Cited by 42 publications

(50 citation statements)

References 23 publications

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“…9 However, certain concerns, such as a potential increase of abortion rates with the introduction of NIPT, have been expressed by women. 10 A recent study in the UK by Lewis et al 11 also showed that women have concerns about the test becoming routinised and that pressure to test will increase as women might feel less justified to decline a test that is so simple and free of risk. In addition, a discrepancy was found between the attitudes of healthcare professionals and women.…”

Section: Introductionmentioning

confidence: 99%

“…Male partners are often not included in research but as decisions about prenatal testing are preferably made by both partners, and research has shown that men want to be involved in this decision-making process, 13 the views of male partners were also explored in this study. Most studies about pregnant women's attitudes towards NIPT have been based on quantitative methods, 9,10,12,14 which have the advantage of being able to include a large study sample. However, they lack a thorough, in-depth analysis of these attitudes.…”

Section: Introductionmentioning

confidence: 99%

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Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

et al. 2014

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Non-invasive prenatal testing (NIPT) and its potential to test for multiple disorders has received much attention. This study explores attitudes of women and men towards NIPT, and their views on widening the scope of prenatal testing in a country with a low uptake of prenatal screening (The Netherlands). Five focus groups with low-risk pregnant women (n ¼ 28), three focus groups with men (n ¼ 19) and 13 interviews with high-and low-risk pregnant women were conducted. Participants felt that current prenatal screening has great disadvantages such as uncertain results and risk of miscarriage from follow-up diagnostics. Characteristics of NIPT (accurate, safe and early testing) could therefore diminish these disadvantages of prenatal screening and help lower the barrier for participation. This suggests that NIPT might allow couples to decide about prenatal testing based mostly on their will to test or not, rather than largely based on fear of miscarriage risk or the uncertainty of results. The lower barrier for participation was also seen as a downside that could lead to uncritical use or pressure to test. Widening the scope of prenatal testing was seen as beneficial for severe disorders, although it was perceived difficult to determine where to draw the line. Participants argued that there should be a limit to the scope of NIPT, avoiding testing for minor abnormalities. The findings suggest that NIPT could enable more meaningful decision-making for prenatal screening. However, to ensure voluntary participation, especially when testing for multiple disorders, safeguards on the basis of informed decision-making will be of utmost importance. INTRODUCTIONNon-invasive prenatal testing (NIPT) allows detection of chromosomal aneuploidies in the foetus by using circulating cell-free foetal DNA (cffDNA) in the plasma of pregnant women. 1 This technique makes it possible to detect foetal trisomies 21, 13 and 18 as early as 9 weeks into the pregnancy, and perhaps even earlier. 2 As the procedure of NIPT consists of only drawing a blood sample, it eliminates the risk of miscarriage associated with invasive diagnostic procedures, that is, chorionic villus sampling (CVS) and amniocentesis. Consequently, NIPT assures both earlier and safer prenatal testing, although diagnostic confirmation of abnormal NIPT results by invasive testing is still required due to the chance of false positive test results. 3 In 2010, Lo et al 4 showed that it is possible to deduce the entire genomic sequence of a foetus through NIPT, implying that NIPT could identify a much wider range of genetic disorders in the future. These major developments in the field of prenatal testing are generating a great amount of debate regarding the potential impact, benefits and drawbacks of NIPT. Greely 5 , for example, provides a summary of the ethical questions that have been raised with regard to the implications of NIPT on the current prenatal screening setting and

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

et al. 2014

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“…Overall, we found that when making decisions regarding prenatal testing, women in Singapore, like those in other countries, (21)(22)(23)28) place greater emphasis on test safety, while HPs place higher value on accuracy and early testing. We found that women who had a previous miscarriage, were aged ≥ 35 years or knew a child with DS gave higher priority to a test that does not carry a risk of miscarriage.…”

Section: Discussionmentioning

confidence: 89%

Evaluation of preferences of women and healthcare professionals in Singapore for implementation of noninvasive prenatal testing for Down syndrome

Barrett¹,

Advani²,

Chitty³

et al. 2017

smedj

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INTRODUCTIONInvasive prenatal diagnosis (IPD) has long been used to prenatally diagnose Down syndrome (DS), but it is associated with a small risk of miscarriage. Noninvasive prenatal testing (NIPT) is a highly sensitive screening test using cell-free DNA in maternal blood for detection of DS without the risk of miscarriage, but it confers a small risk of false-positive and false-negative results. The implementation of these procedures into clinical practice requires an understanding of stakeholder preferences.METHODS A total of 69 health professionals (HPs) and 301 women took part in a discrete choice experiment (DCE) in which preferences for four prenatal test attributes -accuracy, time of results, risk of miscarriage and amount of information provided -were assessed. Conditional logit regression was used to analyse the data. Data on demographics and ranked preferences for test attributes was collected, and a direct choice question regarding NIPT, IPD or neither test was posed to participants. RESULTSThe women showed a preference for test safety, whereas HPs prioritised test accuracy above all other attributes.When offered a direct choice of NIPT, IPD or neither test, women aged 35 years and older, those with previous miscarriage or who knew a child with DS were more likely to choose NIPT. Chinese women preferred NIPT, whereas Indian women preferred IPD.CONCLUSION Our data highlights the need for patient-specifi c counselling, taking into account previous experiences and cultural factors. Since women and HPs prioritise different test attributes, it is essential that HPs recognise these differences in order to provide non-biased counselling.

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“…For instance, in cases where NIPT reveals a very high risk of Huntington's disease, women who would not terminate a pregnancy in the second trimester might decide to do so in the first trimester, even if NIPT had not yet been validated as diagnostic [45]. Moreover, the possibility of earlier and safer testing for non-medical traits, such as the sex of the fetus, could lead to an increase in ethically controversial selective abortions [53,58,62,63].…”

Section: Lowering the Threshold Of Testing And Pregnancy Terminationmentioning

confidence: 99%

Non-Invasive Prenatal Testing: Review of Ethical, Legal and Social Implications

Haidar

Dupras

Ravitsky

2018

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Droits d'auteur © H Haidar, C Dupras et V Ravitsky, 2016Ce document est protégé par la loi sur le droit d'auteur. L'utilisation des services d'Érudit (y compris la reproduction) est assujettie à sa politique d'utilisation que vous pouvez consulter en ligne.https://apropos.erudit.org/fr/usagers/politique-dutilisation/ Cet article est diffusé et préservé par Érudit.Érudit est un consortium interuniversitaire sans but lucratif composé de l'Université de Montréal, l'Université Laval et l'Université du Québec à Montréal. Il a pour mission la promotion et la valorisation de la recherche. Non-invasive prenatal testing (NIPT) using cell-free fetal DNA (cffDNA) from maternal blood has recently entered clinical practice in many countries, including Canada. This test can be performed early during pregnancy to detect Down syndrome and other conditions. While NIPT promises numerous benefits, it also has challenging ethical, legal and social implications (ELSI). This paper reviews concerns currently found in the literature on the ELSI of NIPT. We make four observations. First, NIPT seems to exacerbate some of the already existing concerns raised by other prenatal tests (amniocentesis and maternal serum screening) such as threats to women's reproductive autonomy and the potential for discrimination and stigmatization of disabled individuals and their families. This may be due to the likely upcoming large scale implementation and routinization of NIPT. Second, the distinction between NIPT as a screening test (as it is currently recommended) and as a diagnostic test (potentially in the future), has certain implications for the ELSI discussion. Third, we observed a progressive shift in the literature from initially including mostly conceptual analysis to an increasing number of empirical studies. This demonstrates the contribution of empirical bioethics approaches as the technology is being implemented into clinical use. Finally, we noted an increasing interest in equity and justice concerns regarding access to NIPT as it becomes more widely implemented. Mots clés Keywords Exonération DisclaimerLes évaluations des examinateurs externes sont prises en considération de façon sérieuse par les éditeurs et les auteurs dans la préparation des manuscrits pour publication. Toutefois, être nommé comme examinateur n'indique pas nécessairement l'approbation du manuscrit par cet examinateur. Les éditeurs de BioéthiqueOnline assument la responsabilité entière pour l'acceptation finale et la publication d'un article.Reviewer evaluations are given serious consideration by the editors and authors in the preparation of manuscripts for publication. Nonetheless, being named as a reviewer does not necessarily denote approval of a manuscript by the reviewer; the editors of BioéthiqueOnline take full responsibility for final acceptance and publication of an article.

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Attitudes toward non‐invasive prenatal diagnosis among pregnant women and health professionals in Japan

Cited by 42 publications

References 23 publications

Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

Attitudes of pregnant women and male partners towards non-invasive prenatal testing and widening the scope of prenatal screening

Evaluation of preferences of women and healthcare professionals in Singapore for implementation of noninvasive prenatal testing for Down syndrome

Non-Invasive Prenatal Testing: Review of Ethical, Legal and Social Implications

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