https://www.youtube.com/watch?v=hPoy9lY2qDw&t=1187s

In an increasingly datafied world, reusing data requires rethinking consent and public participation processes about it. First, to ensure the legitimacy of uses, including normative aspects like agency and data sovereignty. Second, to enhance data quality and mitigate risks, especially since data are proxies that can misrepresent reality or be oblivious to the original context or use purpose. Using the case study of the European Health Data Space (EHDS), we propose a polyhedric approach to democratising decision-making and improving the way in which consent processes are conducted.

The European Data Strategy has inaugurated a suite of regulations for data reuse with the aim to become a global standard. Likewise, the EU AI Act has emerged as a blueprint for governing AI-related risks. Yet, it comes without clear guidelines for how the data underpinning these systems, especially general-purpose models and their ‘scrap-it-all’ approach to data, should be legitimately used. The pioneering EHDS should enable citizens to access their health data and share it with their healthcare professionals across countries but also enable these data to be reused by researchers, innovators and policy makers. The Interoperable Europe Act, National Data Spaces and federated data infrastructures like the European Open Science Cloud (EOSC) should support this effort. However, concerns about the gaps and potential contradictions across different regulations (e.g. the Data Governance Act, the Data Act, and the GDPR) and across different constituencies remain. This includes the issue of meaningful consent when data is to be reused and therefore applied to secondary uses, different from which consent may have been obtained in the first place. Moreover, as raised by scholars like Hildebrandt (2023), reusing data in an interoperable ecosystem can result in de-contextualised data or distorted interpretations of reality.

It is therefore becoming increasingly urgent to link democratic institutions and practices with data, technology and its users (Casanovas et al., 2017). If we conceive data as a public, non-rivalrous good, we need to make sure that it is exploited for the public good in a participatory, inclusive, and democratic way. In this paper, our theoretical framework combines deliberative and epistemic approaches to democracy as a basis to inform, draft and monitor governance and regulatory frameworks through iterative and multifaceted public participation. This framework includes different levels, from transnational governance and regulation, to the governance of data collaboratives and intermediaries and to participation within the private sector. The EU’s vision of technological and data sovereignty can only be achieved through polyhedric and interlinked bottom-up, inclusive, and participatory processes of deliberation and decision making.

References

Hildebrandt, M., 2023. Ground-Truthing in the European Health Data Space. In BIOSTEC pp. 15-22. https://www.scitepress.org/Papers/2023/119559/119559.pdf

Casanovas, P., Mendelson, D. and Poblet, M., 2017. A linked democracy approach for regulating public health data. Health and Technology, 7(4), pp.519-537.