Evidence map›Paper›PMID 27618823›Full record

ArticleJournal of genetic counseling2017

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

Rachèl V van Schendel, Adriana Kater-Kuipers, Elsbeth H van Vliet-Lachotzki, Wybo J Dondorp, Martina C Cornel, Lidewij Henneman

Abstract read
In one paragraph

Article in Journal of genetic counseling, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
20citing papers in PubMed, 2 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

20 citing papers in PubMed, 2 syntheses or guidelines pooled it.

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  12. Outcome of publicly funded nationwide first-tier noninvasive prenatal screening.Genetics in medicine : official journal of the American College of Medical Genetics · 2021
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Rachèl V van SchendelDepartment of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
Adriana Kater-KuipersDepartment of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
Elsbeth H van Vliet-LachotzkiDutch Genetic Alliance (VSOP), Soest, The Netherlands.
Wybo J DondorpDepartment of Health, Ethics and Society, Faculty of Health, Medicine and Life Sciences, Research Institutes GROW and CAPHRI, Maastricht University, Maastricht, The Netherlands.
Martina C CornelDepartment of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
Lidewij HennemanDepartment of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands. l.henneman@vumc.nl.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

This study explores the attitudes of parents of children with Down syndrome towards non-invasive prenatal testing (NIPT) and widening the scope of prenatal screening. Three focus groups (n = 16) and eleven individual interviews with Dutch parents (and two relatives) of children with Down syndrome were conducted. Safety, accuracy and earlier testing were seen as the advantages of NIPT. Some participants were critical about the practice of screening for Down syndrome, but acknowledged that NIPT enables people to know whether the fetus is affected and to prepare without risking miscarriage. Many feared uncritical use of NIPT and more abortions for Down syndrome. Concerns included the consequences for the acceptance of and facilities for children with Down syndrome, resulting in more people deciding to screen. Participants stressed the importance of good counseling and balanced, accurate information about Down syndrome. Testing for more disorders might divert the focus away from Down syndrome, but participants worried about "where to draw the line". They also feared a loss of diversity in society. Findings show that, while parents acknowledge that NIPT offers a better and safer option to know whether the fetus is affected, they also have concerns about NIPT's impact on the acceptance and care of children with Down syndrome.

Indexed as

Focus GroupsHealth Knowledge, Attitudes, PracticeParentsPrenatal DiagnosisAdolescentAdultChildChild, PreschoolDown SyndromeFemaleHumansInfantMaleMiddle AgedPregnancyAttitudecfDNACounselingDown syndromeNIPTNon-invasive prenatal testingParentsPrenatal diagnosisPrenatal screeningQualitative research

Identifiers

PMID27618823
PMCPMC5415584

What OpenQuestion holds

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LicenceCC BY
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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.