What Do Parents of Children with Down Syndrome Think about Non-Invasive Prenatal Testing (NIPT)?
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.
Department of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
Rachèl V
RV
van Schendel
Department of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
Adriana
A
Kater-Kuipers
Dutch Genetic Alliance (VSOP), Soest, The Netherlands.
Elsbeth H
EH
van Vliet-Lachotzki
Department of Health, Ethics and Society, Faculty of Health, Medicine and Life Sciences, Research Institutes GROW and CAPHRI, Maastricht University, Maastricht, The Netherlands.
Wybo J
WJ
Dondorp
Department of Clinical Genetics, Section of Community Genetics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands.
Martina C
MC
Cornel
Department 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.
Lidewij
L
Henneman
D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D004314:Down Syndrome / Q000175:diagnosis*; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D008297:Male; D008875:Middle Aged; D010290:Parents; D011247:Pregnancy; D011296:Prenatal Diagnosis
Attitude; Counseling; Down syndrome; NIPT; Non-invasive prenatal testing; Parents; Prenatal diagnosis; Prenatal screening; Qualitative research; cfDNA