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

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

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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.

Original languageEnglish
Pages (from-to)522-531
Number of pages10
JournalJournal of Genetic Counseling
Volume26
Issue number3
DOIs
Publication statusPublished - 1 Jun 2017

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