Disruption as Democratic Practice? Civil Society, Critique, and Controversy on Non-invasive Prenatal Testing in Germany

Non-invasive prenatal genetic testing (NIPT) is a socio-technical innovation that bears the potential of profoundly altering the meaning, the experience and the practices of prenatal care or pregnancy altogether. However, compared to other socio-technical innovations in the field of reprogenetics, such as for instance pre-implantation genetic diagnosis (PGD), demands for and practices of public participation in processes of governing NIPT have remained rather marginal so far. Based on our research on the governance of NIPT in Germany, we examine which efforts and activities of making the sociotechnical innovation process more accountable have taken place, on which occasion, in which institutional settings, upon whose initiative and what the effects of these activities were. We argue that these efforts were severely hampered by a system of fragmented institutional responsibility which effectively relegates ethical, political and social considerations to the individual level and/or to deliberative bodies that have no decision-making authority on the matter. Drawing on the pragmatist sociology of critique (Boltanski, Thevenot, Chiapello) and their notion of justification we focus on the ways actors account for their own part within the innovation process and whether they reflect upon the system of fragmented responsibility as such and their position within it. We argue that to the extent that such reflexion occurred, it was triggered by the interventions of civil society actors who disrupted the institutional routines of fragmented responsibility from outside.