Public accountability of newborn screening: collective knowing and deciding

Abstract

A number of European countries have expanded their screening programme considerably during the last decade. Other countries have, however, not expanded their programme substantially. In this paper, I will compare UK and Austria, two countries representing two ends of the European spectrum. Focussing on the decision-making processes behind the design and expansion of newborn screening, I draw on Sheila Jasanoff's concept of "civic epistemology" (Jasanoff, S. (2005). Designs on Nature. Princeton and Oxford: Princeton University Press.) to investigate how the chosen countries provide information in order to give account for their respective screening policies. In particular, I analyse how key institutions in the UK and Austria use scientific expertise to explain and justify national screening programmes. For this purpose, I compare the material that is made available to the public, including policy documents, scientific studies, medical guidelines, legal regulation, advisory committee reports and public engagement exercises. It was found that the observed differences in the accountability practices are rooted in nationally traditional forms of policy making. However, whether or not these repertoires become indeed realised is a more contingent matter and is often triggered by events which evoke a response from the medical and policy-making actors.