Top-Down Altruism: The EU Data Governance Act

The concept of ‘data altruism’ will find a statutory footing in the European Union from September 2023, when the EU’s Data Governance Act comes into force. Among the provisions within this heterogeneous Regulation lie the bones of new data altruism infrastructure, including registered data altruism organisations. 

The EU is clearly keen to encourage the voluntarily sharing of personal and commercial data for the public good. In theory, this could draw new ‘data donors’ into the research ecosystem, who might not otherwise have allowed their information to be used for the wider interests of society. There are some flaws with this optimism, however. Can individual altruism really be instituted from EU, or even member state level? How will individuals be engaged and motivated to consent to share information? And how does this ‘altruistic’ sharing map onto our established understanding of what it means to ‘donate’ your property?

We welcome attendees to join and contribute to the discussions.

SPEAKERS

Barbara Prainsack is a professor at the Department of Political Science at the University Vienna, where she also directs the Centre for the Study of Contemporary Solidarity (CeSCoS), and the interdisciplinary Research Platform “Governance of Digital Practices”. Her work explores the social, ethical, and regulatory dimensions of genetic and data-driven practices and technologies in biomedicine and forensics. She is also the Chair of the European Group on Ethics in Science and New Technologies which advises the European Commission.

Katharina Ó Cathaoir is Associate Professor of Law at the Faculty of Law, University of Copenhagen and a Pro Futura Scientia Fellow at the Swedish Collegium for Advanced Study, Uppsala. She is also chair of Nordic PerMed Law, which seeks to build expertise in genomic medicine and big data among Nordic legal professionals.

In her research, Katharina is particularly interested in legal questions concerning inclusion and exclusion in data driven healthcare. She has been in a researcher in several interdisciplinary projects, including EU-Stands4PM, PM Heart and MeinWe.

REGISTRATION

For more information please email: miranda.mourby@law.ox.ac.uk
To register please email: imogen.holbrook@law.ox.ac.uk