Attitudes of Israeli parents of children with Down syndrome toward non‐invasive prenatal screening and the scope of prenatal testing

2019 ◽  
Vol 28 (6) ◽  
pp. 1119-1129
Author(s):  
Tamar Nov‐Klaiman ◽  
Aviad E. Raz ◽  
Yael Hashiloni‐Dolev
Keyword(s):  
Down Syndrome ◽  
Prenatal Screening ◽  
Prenatal Testing ◽  
Children With Down Syndrome ◽  
Non Invasive

scholarly journals Review of: Kaposy C. (2018) Choosing Down Syndrome

2019 ◽  
Vol 2 (2) ◽  
pp. 21-22
Author(s):  
Meghan Chevalier
Keyword(s):  
Down Syndrome ◽  
Prenatal Testing ◽  
Pragmatic Approach ◽  
Social Disability ◽  
Children With Down Syndrome ◽  
Non Invasive ◽  
Qualitative Evidence ◽  
The Social

With the advent of Non-Invasive Prenatal Testing, Chris Kaposy believes that more people should choose to parent children with Down Syndrome. Kaposy advocates for the Social Disability Model and recommends a normative pragmatic approach as standard. He makes use of both quantitative and qualitative evidence to support his position.

Budget impact of incorporating non-invasive prenatal testing in prenatal screening for Down syndrome in Turkey

2019 ◽  
Vol 8 (4) ◽  
pp. 402-407
Author(s):  
Zeynep Guldem Okem ◽  
Gokcen Orgul ◽  
Berna Tari Kasnakoglu ◽  
Mehmet Cakar ◽  
Mehmet Sinan Beksac
Keyword(s):  
Down Syndrome ◽  
Prenatal Screening ◽  
Budget Impact ◽  
Prenatal Testing ◽  
Non Invasive

‘We would have missed out so much had we terminated’: What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome

2018 ◽  
Vol 23 (3) ◽  
pp. 290-309 ◽  
Author(s):  
Bethea How ◽  
Andy Smidt ◽  
Nathan J Wilson ◽  
Rebecca Barton ◽  
Chelsea Valentin
Keyword(s):  
Down Syndrome ◽  
Prenatal Testing ◽  
Accurate Diagnosis ◽  
Children With Down Syndrome ◽  
Information Giving ◽  
Non Invasive ◽  
Actual Reality ◽  
Balanced Information ◽  
Depth Interviews ◽  
Thematic Network Analysis

Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the availability of NIPT. Thematic network analysis revealed that although fathers appreciated an early diagnosis with NIPT, they saw the test as being a predetermined pathway to termination. Fathers felt that expectation to terminate reflects negative societal attitudes towards those with Down syndrome and disability, fearing that NIPT may become a form of eugenics. Fathers retrospectively contrasted these attitudes with the actual reality of raising their children with Down syndrome, which they described as bringing joy to their lives. Findings suggest that although fathers valued NIPT as an information-giving tool that allowed autonomous parental choices about the pregnancy, they believe that it should be accompanied by balanced information about the reality of raising a child with Down syndrome.

VP36 Cost-Effectiveness Of Non-Invasive Prenatal Testing For Down Syndrome

2017 ◽  
Vol 33 (S1) ◽  
pp. 165-166
Author(s):  
Estibalitz Orruño ◽  
Juan Carlos Bayón ◽  
Isabel Portillo ◽  
José Asua
Keyword(s):  
Down Syndrome ◽  
Cost Effectiveness ◽  
Prenatal Screening ◽  
Prenatal Testing ◽  
Cost Effective ◽  
Sensitivity Analyses ◽  
Non Invasive ◽  
Cell Free Fetal Dna ◽  
Primary Test ◽  
The Cost

INTRODUCTION:The analysis of cell-free fetal DNA in maternal blood, also called Non-Invasive Prenatal Testing (NIPT), represents an emerging technology and a possible alternative/complement to current prenatal screening based on biochemical and sonographic markers for Down Syndrome (DS) detection.The aim of the study was to compare the application of NIPT with the prenatal diagnosis/screening procedures currently applied in the Basque Country.METHODS:An analytical decision model was developed to assess the costs and consequences, comparing current prenatal screening, NIPT as a contingency test in high-risk cases and NIPT as a first-line screening test. An economic analysis was conducted to determine which strategy was more cost-effective. Sensitivity analyses were performed (1).RESULTS:For a population of 97,074 pregnant women in gestational week 14 and a cut-off point of 1:270, NIPT as a contingent test was not cost-effective, detecting two cases less of DS and causing a lower number of miscarriages related to invasive-testing (4 versus 23) at a slightly lower cost (EUR8,111,351 versus EUR8,901,872).For risk cut-off points of 1:500 or 1:1000 for contingent NIPT, the number of DS cases detected increased, as did the cost. It could be cost-effective compared with current prenatal screening, (EUR61,763 or EUR256,123 per extra DS case detected, respectively).Using the NIPT as a primary test detected more DS cases (296 versus 271) and caused less miscarriages (5 versus 23), at a substantially higher cost (EUR41,395,645 versus EUR8,901,872). Cost-effectiveness analysis indicated that it was more expensive and more effective.Univariant sensitivity-analysis showed that when the price of the NIPT as primary test was EUR76, it was dominant compared with current prenatal screening. It was also cost-effective compared with the NIPT as a contingent test (EUR9,869 per extra DS case detected).CONCLUSIONS:The study shows that NIPT had higher detection rates for DS in different scenarios, but the cost constitutes a limiting factor for implementation in the Basque Health System.

scholarly journals What Do Parents of Children with Down Syndrome Think about Non-Invasive Prenatal Testing (NIPT)?

2016 ◽  
Vol 26 (3) ◽  
pp. 522-531 ◽  
Author(s):  
Rachèl V. van Schendel ◽  
Adriana Kater-Kuipers ◽  
Elsbeth H. van Vliet-Lachotzki ◽  
Wybo J. Dondorp ◽  
Martina C. Cornel ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Prenatal Testing ◽  
Children With Down Syndrome ◽  
Non Invasive

Parenting the Child With Down Syndrome: Understanding—but Going Beyond—the “Down Syndrome Advantage”

2020 ◽  
Author(s):  
Robert M. Hodapp ◽  
Ellen G. Casale
Keyword(s):  
Socioeconomic Status ◽  
Down Syndrome ◽  
Behavior Problems ◽  
Prenatal Testing ◽  
Children With Autism ◽  
Facial Features ◽  
Cultural Resources ◽  
Noninvasive Prenatal Testing ◽  
Birth Parents ◽  
Children With Down Syndrome

Compared to parents of children with other types of intellectual disabilities, parents of children with Down syndrome experience less stress and more rewards, although this “Down syndrome advantage” mostly occurs compared to parents of children with autism and before groups are equated. Behaviorally, children with Down syndrome display more sociable interactional styles and baby-faced facial features, along with fewer instances of severe behavior problems. Demographically, parents of children with (versus without) Down syndrome average 5 years older when giving birth; parents are more often well educated, married, of higher socioeconomic status, and they likely provide these children greater financial and cultural resources. In most industrialized societies, rates of Down syndrome seem steady, with easily available, noninvasive prenatal testing counteracted by increasing numbers of women giving birth at older ages. Parenting children with Down syndrome relates to characteristics of children, their parents, and society, all of which intersect in important, underexplored ways.

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

2021 ◽  
Author(s):  
Karuna R. M. van der Meij ◽  
Annabel Njio ◽  
Linda Martin ◽  
Janneke T. Gitsels-van der Wal ◽  
Mireille N. Bekker ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Pregnant Women ◽  
Prenatal Screening ◽  
Screening Program ◽  
Informed Choice ◽  
Aneuploidy Screening ◽  
Non Invasive ◽  
Fetal Aneuploidy ◽  
Societal Pressure ◽  
Prenatal Test

AbstractDue 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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