Das ‚System of Care’ der fetomaternalen Chirurgie bei Spina bifida. Zur Etablierung eines klinischen Standards und einer gesellschaftlichen Norm

Dissertation project Sandra Gratwohl

Prenatal therapies are currently creating a field of biomedical innovations that generates new forms of medical practice and shapes social reality. A Swiss centre in the field of maternal-fetal medicine has been offering prenatal surgery for spina bifida, a neural tube defect, since 2010. This procedure, which involves opening the abdominal wall and the uterus, is seen by medicine as the "novel standard of care". But what does standard mean here? How does a clinical standard become a service that is regularly covered by health insurance? And how does a treatment option become a social normality?

These questions are discussed in the dissertation project financed by the Swiss National Science Foundation. Findings from recent field research show that this new standard treatment requires complex, interdisciplinary interaction: a "System of Care", as one of the co-directors of the centre calls it. In this "System of Care", medical actors (from neonatology, gynaecology and anaesthesia to paediatric surgery and rehabilitation), pregnant women and their families interact. A central aspect of this is the commitment of all actors to this system through "compliance", i.e. a voluntary commitment to behaviour that is in line with the regulations.

If standards are seen in the sense of "Ecologies of Knowledge" (Star 1995), it becomes clear that they are experienced and negotiated unequally in different social worlds. Standards are neither neutral nor apolitical or given. Rather, they embody values, lead to consequences and require obligations. In practice, standards are continually produced, maintained, and probably continually further developed to account for any insights that have been revealed in practice. Through an ethnographic approach, I would like to understand how precisely the "System of Care" works, why it is necessary, which actors and positions it entails, how compliance is achieved, and how pregnant women experience their own role in the system.

The standardization of a medical option has implications beyond the medical field. For example, it is being discussed whether prenatal surgery for spina bifida should be given the status of a routine treatment covered by insurance benefits. For this reason, I will go beyond the "System of Care" to follow how the surgical technique is negotiated in politics, law and society. The negotiation of a medical possibility into a social normality is on the horizon. New prenatal norms have consequences for pregnant women’s decision-making. This study intends to show how their autonomy is addressed in this process.

The results of the dissertation will provide better insight into the medical, legal, institutional and social aspects of this development, its consequences and the public discussion.