Patrons of the State: Reciprocity, Belonging, and Down syndrome in Denmark

n 2004, Denmark became one of the first countries in the world to extend free prenatal screening for Down syndrome to all pregnant women, regardless of age. The new guidelines were intended to shift Denmark from a “paradigm of prevention” of disabled births toward an era of autonomous, informed decision-making for pregnant women. Nearly two decades on, what is the impact of the guideline? Surprisingly, the rate of termination of fetuses diagnosed prenatally with Down syndrome has remained relatively unchanged—nearly 99%—yet each year, about 20-30 infants with Down syndrome are born in Denmark. In many cases, parents of these infants participated in screening and received a “false negative” result; that is, a risk score that did not qualify them for diagnostic testing. These families are not only surprised by the antenatal diagnosis, they very often believe that their child will spend his or her life without ever meeting another child with the same diagnosis. This dissertation explores the lives and experiences of these families as they connect with each other and negotiate with their local municipality to access developmental resources for their young child. I show how Down syndrome acts as a prism through which anxieties and expectations about disability and belonging in Danish society become visible. The reflections of doctors, state agents, and everyday Danes about Down syndrome are helpful for understanding how Danes compose themselves as moral citizens within the welfare state, and why parents of children with Down syndrome struggle to position their children as a worthy investment.