Monday 23 May 2022
Area 42 Midi
Uppsala University (SE) and the CyberGovernance project

Panel Description

The European Health Data Space is a step forward for the effective exploitation of Health Data, moving decisively from the concept of ‘open access’ towards ‘open science’. The strong push in the scientific community towards open science already made health and genetic data in research databases available for (re)use by diverse players but not in all the novel contexts  where data are going to be used. The governance of Health Data in Cyberspace was scrutinized at different levels from different actors on the theoretical and empirical level. In this panel we will discuss governance directions for the use health-relevant data, looking at results from preference studies conducted with experts and the general public in 12 EEA countries. Results revealed divergences from the GDPR to be discussed with relevant experts. Those results can enrich the discussion for new approaches to governance of of data, further conceptualized,  in relation to unintended consequences, protection of fundamental rights and societal acceptability.

o What are studies on preferences for the use of health data showing to us?
o What are the elements to be taken into account to reconceptualize open access and open science (taking people preferences into account)?
o What role plays the contextual integrity framework to think governance further?
o Is data driven research taking the human rights framework into account?
o How can we account for responsible science and human rights approaches?


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