Prenatal screening for Down syndrome and for structural congenital anomalies in the Netherlands: Information provision, informed decision-making and participation

Abstract

Congenital anomalies are the leading cause of death and morbidity in children under 1 year of age. Down syndrome and neural tube defects are congenital anomalies that may be diagnosed before birth using prenatal tests. In the Netherlands, prenatal screening for Down syndrome and for structural congenital anomalies is offered to every pregnany woman in the context of a nation-wide prenatal screening program. The aim of this program is to inform prospective parents of the options available to them when a congenital anomaly is diagnosed; to prepare for the birth of a child with the condition, or to opt for termination of pregnancy. The goal of the active, routine offer of information about prenatal screening for Down syndrome and structural congenital anomalies, is to enable prospective parents to make an autonomous informed decision about whether or not to participate in the prenatal screening program. The objective of this thesis is to evaluate the information provision, informed decision-making and participation, in the context of the Dutch program for prenatal screening