A generalized invariant imbedding equation II

Research into fetal development and medicin

Verantwoorde introductie van NIPT: Huidige en toekomstige scenario’s: Verslag van een stakeholdermeeting ESPRIT studie

Op 25 november 2014 is ten behoeve van de ESPRIT I studie een stakeholdermeeting gehouden om de (toekomstige) implementatie van niet-invasieve prenatale testen (NIPT) te bespreken. Het doel van de bijeenkomst was de aanknopingspunten en uitdagingen voor een verantwoorde introductie van NIPT in Nederland in kaart te brengen. Om dit te bewerkstelligen werden aan de genodigden verschillende scenario’s voorgelegd en werden de potentiële gevolgen per scenario geïnventariseerd voor wat betreft een geïnformeerde keuze en psychische ervaringen van de zwangere, de counseling door de zorgverlener en de praktische aspecten. Dit verslag geeft een samenvatting van de gehouden voordrachten en van de gevoerde discussie

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