Accepted Paper:

Non-invasive prenatal testing (NIPT) in Germany: Challenges for public participation  

Authors:

Sabine Könninger (IMEW - Institute "Mensch, Ethik und Wissenschaft")
Kathrin Braun (University of Vienna)

Paper short abstract:

Starting from a broad concept of public participation including (un)invited participation, we will map out the spaces of civic participation in the governance of NIPT. How do participation actors construct problems and which problematizations get (not) admitted in which context?

Paper long abstract:

Prenatal genetic testing is the most important area of genetic testing today. Its routinization over the past decades has been termed an "invisible revolution" (Löwy); it has profoundly transformed prenatal care, however without stirring much public debate. Currently, another innovation, non-invasive prenatal genetic testing (NIPT), is about to transform prenatal care again. The paper will examine the problematization(s) of NIPT in Germany, starting from the assumption that, as a sociotechnical innovation, NIPT takes shape within specific institutional and discursive contexts. It will present some preliminary findings from an ongoing research project on processes and spaces of public participation in the governance of NIPT. Starting from a broad concept of public participation that includes civic participation in public debate, protest events, ethics committees, arms lengths bodies and more, we will map out the spaces where some form of civic participation in the governance of NIPT takes places. Referring to the Foucauldian concept of problematization and the sociology of critique (Boltanski, Thevenot, Chiapello), we are interested in the question how civic participation actors construct the problem(s) at stake, what type of critique, if any, they seek to raise, which regimes of justification they refer to, which constraints they face and how they deal with these, and which problematizations get admitted in which context and which not. In particular, we want to know whether, when and how actors have tried to reframe the problem at stake in such a way that non-technical, social or cultural innovations come into view as potential alternative solutions.

Panel T144
Ecologies of participation: Thinking systemically about science and technology by other means