Paper short abstract:

The paper focuses on the implications of the envisioned European Health Data Space upon biobanking cross-border data sharing practices. It explores the reshaping of biobanks to fit under the EHDS visions, through a comparative study of the Greek and Norwegian biobanking infrastructure.

Paper long abstract:

The European Health Data Space (EHDS) is envisioned to establish a common framework for data sharing, aiming at capitalizing on the imagined potential of a safe and secure cross-border exchange, use and re-use of health data. Visions for better health and biomedical research in Europe thus become key arguments in favour of sharing health data. Within this framework, biobanks and biobanking networks, like the BBMRI-ERIC, are endorsed as key infrastructures with expectations to generate value through biomedical research, made possible by the creation, storing, and sharing of samples and data. However, reshaping biobanking to fit under the EHDS could be translated into tension with old practices and arrangements. Being attentive to visions in data practices and research infrastructures means to explore how they lead to sociotechnical rearrangements. Pooling of health data for research in many ways rests on the infrastructuring of biobanks, i.e. building enabling environments for quality data sharing. It therefore becomes important to look at how the EHDS affects the infrastructure of biobanks (and BBMRI-ERIC). Looking into infrastructuring means bringing the practices of a set of actors – ranging from researchers, up to policy makers - into one socio-technical network.

The paper will present interview data from actors connected with the research infrastructure of BBMRI-ERIC in Greece and Norway, focusing on the uses of visions specifically in the discussions surrounding biobanking, while providing preliminary findings regarding the ways the EHDS visions are being contested and/or stabilized and how the actors themselves envision health data sharing going forward.