Στοιχεία επιβλεπόντων καθηγητών:
Stavros Ioannidis, assistant professor, department of history and philosophy of Science, National and Kapodistrian university of Athens.
Περίληψη:
In the last decade, digital health and health research has been omnipresent in policy agendas in the EU context, determining a discourse about progress that is based on the beneficial impact of science, technology, and biomedicine in data-driven healthcare. With these policy agendas, data-driven healthcare launches itself as a means for public authorities to respond to wider sets of problems related to not only health research and health care but also to budget restraints and demographic challenges. Subsequently, expectations and promises of a prosperous future for health and biomedicine in Europe, along with the handling of present and future risks, become key arguments in favour of sharing health data. These expectations are explicitly communicated in the latest European Commission mission letters, as well as in the proposal for a regulation of the European Health Data Space (EHDS). As a regulation, the EHDS will, through its performative power, create new kinds of responsibilities, both for the visioners – as their visions have tangible impacts on how potential futures might look – as well as for the researchers and the people on the ground who facilitate and handle the prospected data that is aimed to be shared. Consequently, the European Commission is prominently involved in creating, institutionalizing, and extending sociotechnical imaginaries. However, the process of creating, nourishing, and stabilizing a sociotechnical imaginary runs through several stages, especially in the EHDS, as it is an overreaching policy initiative involving a multitude of actors from a multitude of different national and regional contexts and organisational levels.
Within this framework, biobanks and biobank networks, like the BBMRI-ERIC, have often been endorsed as key infrastructures with the expectation that they would help to generate benefits and values through biomedicine, made possible by the discovery, storing, and sharing of samples and data. Nevertheless, reconceptualizing biobanks and stakeholders to fit under the EHDS expectations and visions of health data sharing is translated into tension with old practices and arrangements. Being attentive to expectations, visions, and imaginaries in data practices and research infrastructures is imperative in order to understand how data flows and do not flow. Thus, sharing of health data is very much about sociotechnical rearrangements being made and actions being taken that, arguably, are necessary for it to be realized.
By following a sociotechnical imaginary approach, this thesis offers insight into the performative dimension of European policy-making as well as into how the expectations and visions of such policy initiatives are mediated among heterogeneous and competing expectations and visions. Drawing on approaches from the interdisciplinary field of study known as ‘Science, Technology, Society’ or ‘Science and Technology Studies’ (STS), this thesis sets out to analyse the currently predominant frames for reasoning for promoting EHDS. Additionally, through the use of a comparative case study, the thesis aims to understand how the expectations and visions of EHDS materialize within the biobank network of BBMRI-ERIC in Greece and Norway, especially on how it affects expectations regarding sharing of health data. By comparing the two cases, both distinct characteristics of Greece and Norway have been outlined and highlighted, and more generic insights have emerged.
Λέξεις-κλειδιά:
EHDS, HEALTH DATA, BIOBANKS, BBMRI-ERIC, SOCIOTECHNICAL IMAGINARY
