Chapter 15 From Informed Choice to Distributed Decision-Making: Ethnographic Tales from a Study on Prenatal Testing in Denmark

Abstract

Current professional and policy debate over the use of prenatal testing emphasizes the need for informed choice making and for services that provide prospective parents with what is referred to as ‘non-directive counseling’. On the basis of an ethnography of prenatal decision making in the context of first trimester prenatal risk assessment (FTPRA) in Denmark, the chapter challenges the representational view of knowledge production and the liberal notion of human action underlying these ideals. The paper develops an account of prenatal decision making as a process of knowledge production and illustrates how this approach allows us to study processes of decision making as an effect of an assemblage of multiple forms of actors involved in the process of prenatal decision making (such as human actors, technologies, standards, policies and non-verbal aspects of knowledge production). I argue that framing the problems and solutions about prenatal testing only through the lens of choice tends to collapse ethical questions on prenatal testing into questions about the possibility of autonomous decision making. Ethical consideration express an ethics of being locally accountable for the ways in which programs of prenatal testing intervene in pregnant women’s lives and of taking responsibility for the entities and phenomena that emerge through such knowledge production.