Contested Medicalization, Fundamental Questions and Fragmented Responsibility: Governing Non-Invasive Prenatal Testing (NIPT) in Germany

NIPT is a socio-technical innovation that bears the potential of profoundly altering the meaning of prenatal care. In Germany, since market entry in 2011 it has become a matter of public controversy. Experts, policy-makers, and civil society actors tend to agree that NIPT raises fundamental social and ethical issues and that it requires responsible governance. Yet, who is responsible, and for what exactly, and who, in particular, is responsible for addressing the fundamental issues involved, is matter of struggle and contestation.

Drawing on the pragmatic sociology of critique (Boltanski et al.), we focus on the ways actors account for their own part within the governance process. Based on narrative interviews, document analysis and participant observation, we examine how various actors interpret and allocate responsibility and reflect upon their own part within it – or not. We show that the question of responsibility is linked to the question of the “whatness” - of what is at stake: Is NIPT a medical product? If so, what is medical about it? Or is it rather a selection technology? Is it just another method for achieving well accepted ends or a new screening practice? A means of risk elimination or a manifestation of ableism? We show that the fundamental question of what is medical about NIPT was not negotiated, due to institutional routines of fragmented responsibility: decisionmakers tended to construct the issue in technical terms, bracketing substantive questions of ends and purposes. Public reflection about fundamental issues only came up when civil society actors disrupted institutional routines from outside. Further, we see a tendency of shifting responsibility for substantive questions to other forums without decision-making authority. At the end of the day, NIPT is effectively governed by the individual and the market.