How do prospective parents who decline prenatal screening account for their decision? A qualitative study

Despite the aim of nuchal translucency screening to enhance reproductive choices among prospective parents, research on the experience of those who choose to decline this screening has been fairly limited. The objective of this study is to gain an understanding of how parents who decline screening account for their decision in a setting where screening for Down's syndrome in early pregnancy is the norm. The majority of research on prenatal screening choices has been conducted retrospectively; there has been very little research that has explored decision making on a prospective basis and that has included both parents. In order to study this question, a purposive sample of ten couples who had decided to decline screening was recruited from four health care centres in Iceland. Data were gathered in semi-structured interviews conducted with each participant twice during the pregnancy (at 7-12 weeks pregnant and at 12-24 weeks pregnant), for a total of 40 interviews. We find that the decision to decline screening is largely determined by what prospective parents bring with them to the pregnancy, i.e., their personal philosophy of Down's syndrome and the high value they place on maintaining the complexity of life. The test is also considered unreliable by some of the participants. These findings have implications for those who are involved in formulating and providing antenatal screening policies and practices.