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

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.

Ethics of routine: a critical analysis of the concept of ‘routinisation’ in prenatal screening

“…The three clusters of versions of routinisation are not separated but relate to and reinforce each other16: an increase in uptake of first-trimester prenatal screening might lead to an increase in abortions, which might lead to fewer children with Down’s syndrome. This might have consequences for the existing group of people with Down’s syndrome, including discrimination or less or lower quality healthcare.…”

“…These consequences might also have implications for women’s freedom to choose or decline prenatal screening. The existence of only limited (health)care for people with Down’s syndrome or of a negative public image of Down’s syndrome could pressure women into choosing prenatal screening and into abortions of affected pregnancies 16. Routinisation as used in the literature can thus also refer to more than one version at the same time and these versions can be inter-related or affect one another.…”

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

“…In a similar manner, parents of children with DS in other countries also had a wide spectrum of views concerning NIPS and screening for DS (Bryant et al, ; Inglis et al, ; van Schendel et al, ; Skotko et al, ). While some recognized the advantages of NIPS, it was seen by others as having potentially negative implications like increased social stigma and decreased availability of services for individuals with DS, as well as increasing the pressure on women to test.…”

The Quiet Progress of the New Eugenics. Ending the Lives of Persons With Intellectual and Developmental Disabilities for Reasons of Presumed Poor Quality of Life

“…Therefore, the question is how accurate information about living with the condition of DS may affect women's informed choices. A qualitative study on effects of NIPT on the prevalence of DS in the Netherlands found that parents of children with DS think accurate information is lacking for both users and providers (Van Schendel et al, ). Similar studies in other countries support these findings.…”