Embedded: An ethnography of the medical epistemology of Long-Covid in the NeuroCOV research consortium

The World Health Organization (WHO) estimated that the Coronavirus Disease 2019 (COVID-19) has caused more than 2 million deaths in the European Region1. Far from having exhausted its course, an increasing amount of clinical evidence associate COVID-19 infection with an elevated risk for neurological and psychiatric complications (i.e. ‘NeuroCovid’) in 33-49% of patients after 6 months from the infection2,3. NeuroCovid is thus de facto emerging as a new disease category whose ontology-in-the-making bears the mark of the political and technoscientific upheavals characterising the current times. Firstly, the latest technoscientific advances in the life sciences are reconfiguring epistemic practices of disease categorisation and investigation, as the spectrum of methods by which researchers find agreement on newly discovered biomedical facts are increasingly converging toward one scale of analysis: the single cell data. In parallel, the European Union is promoting a profound normative restructuring towards supranational health data sharing, through the European Health Data Space (EHDS) Regulation4, fully impacting current governance of data-flows among public and private actors, and thus their power to govern advances across the digital- and the life-sciences. To investigate these epochal changes as they come to bear on the ‘NeuroCovid’ disease, this paper adopts a two-fold approach: first, a critical review of the literature, from the medical and STS fields alike, will provide insights into the multifaceted, contingent and conflicting disease ontology by posing foundational questions such as: what is NeuroCovid, and who has the power to adjudicate it? How are stakeholders’ lives impacted by the fashion and timing of disease definition? Second, this analysis will be enriched by an ethnographic study conducted within the European Consortium NeuroCOV5, particularly in its Milan-based team of researchers and clinicians, aimed at documenting the state-of-the-art epistemic practices of NeuroCovid disease definition through participant observation and interviews. Leveraging “NeuroCOV” as an invaluable case-study and closely observing key research nodes, from patients’ enrolment phases to single-cell omics data harmonization, occurring in one of the largest consortiums currently investigating the disease, will further enlighten disease categorization practices in the current medical field, characterised by thrusts of political reconfiguration and datafication.