In the past few years, major consumer technology companies have moved into the health research domain. We are witnessing a digital disruption of health research, or a “Googlization of health research” (GHR). Within this project, a framework will be developed on how digital health and capitalism intersect with both research ethics and the lawlessness of the internet. This should provide a better understanding of personal health governance.
Benefits of open data
The biggest challenge is not individual privacy, but the question of how we as a society and a collective benefit from, and responsibly use all this data. The tools that individuals currently have to view and use personal health data is ill-suited for developing a more collective overview. We will research possible new approaches, based on solidarity and seeking to enhance collective agency and control, as a promising alternative. Approaches like these usually allow for view on ‘the common good’, while GHR introduces competing conceptions of that, including “increased efficiency”, “greater inclusivity”, and “economic growth”.
We will develop a normative framework that can place greater importance on collective benefits of being open with this data, while also accounting for ethics in research. To do this, we will first map the different conceptions of the common good – or “moral repertoires” – that motivate those involved in collaborations of the GHR-type. Using an empirical-philosophical methodology, we will critically evaluate these repertoires and the value trade-offs they involve in practice. Next, we will explore the viability of commons- and solidarity-based approaches. Finally, these results will be integrated into a novel, empirically-robust normative framework that can offer guidance to research ethicists and policy makers.
