Why do pregnant women accept or decline prenatal diagnosis for Down syndrome?

Ternby, Ellen; Axelssön, Ove; Annerén, Göran; Labas, P; Ingvoldstad, Charlotta

doi:10.1007/s12687-016-0272-6

Cited by 18 publications

(23 citation statements)

References 12 publications

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“…In the group of non-participants 61% were foreigners, this is a considerably large percentage when compared to the general population of the uptake area where the proportion of immigrants is only 13% [ 18 ]. This is in line with other studies and with clinical experience suggesting that women declining prenatal screening more often originate from non-western countries [ 6 , 11 , 19 ]. The differences in the finding may be explained by the different study designs.…”

Section: Discussionsupporting

confidence: 92%

Reasons for non-participation in malformation scans in Denmark: a cohort study

Hjort-Pedersen

Olesen

Garne

et al. 2018

BMC Pregnancy Childbirth

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BackgroundThe aim of the study was to estimate the proportion of women giving birth in two hospitals in the Region of Southern Denmark who did not attend the malformation scan and to elucidate the reasons for not participating.MethodsIn this register-based descriptive study, we used patient administration systems to identify women who had given birth at two Danish hospitals between March 2013 and January 2015. We then linked this information with the hospital database for fetal medicine (Astraia) to identify women who did not attend the malformation scan at week 18–20. We reviewed the medical records of these women to validate the data and to identify the reason for non-participation.ResultsOf 7690 births, 153 (2%) women did not attend the malformation scan. The main reason for non-participation was a passive deselection (81%). Most of these women were not present in Denmark at the time of the malformation scan (61%) and few women declined (8%).ConclusionsLess than 2% of a birth cohort in two major hospitals in Denmark did not attend the free offer of a malformation scan. Most of these women (81%) did not actively decide against the malformation scan. Very few (0.2%) declined the malformation scan. Non-attendance is not always due to an active decision made by the pregnant woman.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-1877-z) contains supplementary material, which is available to authorized users.

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Section: Discussionsupporting

confidence: 92%

Reasons for non-participation in malformation scans in Denmark: a cohort study

Hjort-Pedersen

Olesen

Garne

et al. 2018

BMC Pregnancy Childbirth

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“…It is important to provide adequate information about the limitations of the second trimester ultrasound diagnostics scan. Some parents in our study stated that the purpose of the second trimester ultrasound diagnostics scan was to "check everything" and others used the words, "to check that everything looks okay", which is in line with other previous studies (21). It is di cult to know what the parents fully mean when using the word everything as in the foregoing sentences, but it is certainly of great importance that the parents are informed about the fact that the second trimester ultrasound diagnostics scan is not able to detect every possible malformation or aberration.…”

Section: Discussionsupporting

confidence: 88%

The information provided at the antenatal clinic regarding foetal diagnostics -how is it perceived? A qualitative interview study

Carlsson

Strömbäck

Lundgren

2021

Preprint

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Background: Prenatal testing is voluntary and should be offered to all pregnant women in combination with sufficient information. Earlier studies have shown that pregnant women often felt the information given at the antenatal clinics about foetal diagnostics was lacking. Since new methods in foetal diagnostics are introduced into routine health care, there is an increased need for adequate information. The aim of this study was to examine how pregnant women and their partners perceive the information given at the antenatal clinic regarding foetal diagnostics, as well as to increase the understanding of how this information can be improved.Methods: A qualitative interview study was conducted in the Gothenburg area in Sweden. Ten women and seven partners expecting their first child were interviewed. The data was analysed using content analysis with an inductive approach.Results: The interview data generated three main categories and ten subcategories. The first category, ‘Diversity in the information perceived,’ concerned differences in the level of information perceived regarding voluntariness, the methods’ purpose and the possibility of abnormal findings. The second category, ‘Varying needs related to improved information,’ concerned the parents’ needs related to thorough information and pre-existing knowledge. The third category, ‘The midwife has a great impact on the information perceived,’ concerned sufficient and insufficient susceptibility and time to ask questions as well as varying experiences of the midwife’s attitude. Conclusions: Although previous research have already pointed out that information regarding foetal diagnostics is lacking, this study shows that there is still room for improvement. This is even more urgent now with new methods being introduced, which can make choices concerning foetal diagnostics even more complicated for the pregnant woman. The given information should be explicit concerning purpose, limitations and the voluntariness of prenatal testing. Sufficient time for questions and discussion was important to many who were interviewed. The diversity in answers among the participants in the study highlights the importance of considering the level of the parents’ pre-existing knowledge and their individual thoughts and questions and that it is important to adapt the information to the individual woman and partner.

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“…In response, it is underlined that the aim of prenatal screening is not preventing the birth of disabled people, but promoting reproductive autonomy [ 17 ]. Also, studies have shown that women’s reasons for the selective termination of their pregnancies include prevention of a life of severe suffering and not being able to create the best conditions to care for a child with a disability [ 17 , 39 – 43 ], which does not support this critique. However, with the introduction of NIPT, the uptake of first-trimester screening might increase and the number of persons with disabilities might decrease.…”

Section: Resultsmentioning

confidence: 99%

Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals

Kater-Kuipers

Bunnik

Beaufort

et al. 2018

BMC Pregnancy Childbirth

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BackgroundThe introduction of non-invasive prenatal testing (NIPT) for foetal aneuploidies is currently changing the field of prenatal screening in many countries. As it is non-invasive, safe and accurate, this technique allows for a broad implementation of first-trimester prenatal screening, which raises ethical issues, related, for instance, to informed choice and adverse societal consequences. This article offers an account of a leading international ethical framework for prenatal screening, examines how this framework is used by professionals working in the field of NIPT, and presents ethical guidance for the expansion of the scope of prenatal screening in practice.MethodsA comparative analysis of authoritative documents is combined with 15 semi-structured interviews with professionals in the field of prenatal screening in the Netherlands. Data were recorded, transcribed verbatim and analysed using thematic analysis.ResultsThe current ethical framework consists of four pillars: the aim of screening, the proportionality of the test, justice, and societal aspects. Respondents recognised and supported this framework in practice, but expressed some concerns. Professionals felt that pregnant women do not always make informed choices, while this is seen as central to reproductive autonomy (the aim of screening), and that pre-test counselling practices stand in need of improvement. Respondents believed that the benefits of NIPT, and of an expansion of its scope, outweigh the harms (proportionality), which are thought to be acceptable. They felt that the out-of-pocket financial contribution currently required by pregnant women constitutes a barrier to access to NIPT, which disproportionally affects those of a lower socioeconomic status (justice). Finally, professionals recognised but did not share concerns about a rising pressure to test or discrimination of disabled persons (societal aspects).ConclusionsFour types of limits to the scope of NIPT are proposed: NIPT should generate only test outcomes that are relevant to reproductive decision-making, informed choice should be (made) possible through adequate pre-test counselling, the rights of future children should be respected, and equal access should be guaranteed. Although the focus of the interview study is on the Dutch healthcare setting, insights and conclusions can be applied internationally and to other healthcare systems.

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Why do pregnant women accept or decline prenatal diagnosis for Down syndrome?

Cited by 18 publications

References 12 publications

Reasons for non-participation in malformation scans in Denmark: a cohort study

Reasons for non-participation in malformation scans in Denmark: a cohort study

The information provided at the antenatal clinic regarding foetal diagnostics -how is it perceived? A qualitative interview study

Limits to the scope of non-invasive prenatal testing (NIPT): an analysis of the international ethical framework for prenatal screening and an interview study with Dutch professionals

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