In the Bodies of Data subproject, we interrogate the emerging politics, policies and practices around personal health data in the Nordic region. Using a central interest in the changing roles and responsibilities for data and its infrastructures, we empirically explore three main themes:
- The digital longevity and aftermath of controversial events with health data
- The problematic area of data storage and deletion
- How new platform-based initiatives to move and store personal health data contribute to changing paradigms of ownership and consent within the growing personal data economy
Personal health data – in its contested definitional space – comes with significant individual and societal promise in a time of computational advance. However, how we put it to use responsibly, and who decides, is as yet uncertain. Each of these themes contributes to the subproject’s overall aim of laying out the motivations in play as different sectors navigate the tensions and values inherent in formulating novel data politics.
Project members: Professor Mark Elam, Associate Professor Rachel Douglas-Jones, PhD Fellow John Mark Burnett
Research question: How is big data experimentation problematising established roles and responsibilities within Danish healthcare, and what new kins of data politics are being produced as a result?
Theme: Transnational governance