Informed Decision Making about prenatal screening: does it work?

Abstract

Background: Pregnant women in the Netherlands can make use of prenatal screening for Down’s Syndrome (combined test) and/ or other congenital disorders (ultrasound at 20 weeks). Women are supposed to make an informed decision about participation. However, it is not clear whether they do, especially not for women from ethnic minority groups, those with lower SES and young women under 23. Methods: Focusgroup discussions, and face-to-face interviews with Turkish, Moroccan, low SES, and young pregnant women were held using IPA for analyses. Findings: Women mentioned various reasons for (usually) not taking part in Down Syndrome screening. There were both valid: ‘my risk is low since I am young’, and less valid reasons: ‘Down Syndrome does not occur in my family’. Emotions played an important role. The ultrasound at 20 weeks was considered standard care and taken as opportunity to learn about the baby’s sex. Conclusions: Pregnant women make a conscious, but not always informed, decision about taking part in Down Syndrome Screening, which is not covered by insurance companies. They do not reflect upon taking part in standard care