Periodic Reporting for period 1 - Digital Good (The Digital Disruption of Health Research and the Common Good. An Empirical-Philosophical Study)
Reporting period: 2019-01-01 to 2020-06-30
1. Empirical: What conceptions of the common good are enacted in GHR? And what can be learned from this heterogeneous lay normativity?
Little to no research has yet been done on how GHR projects are unfolding. My team will conduct fieldwork on six case studies. Using methods from empirical philosophy (Mol 2002; Pols 2012), we will identify the diverse conceptions of the common good, or “moral repertoires” (Boltanski and Thévenot 2006), motivating different actors – how they clash and are negotiated in practice. This identification will be helpful for navigating new entanglements of public/private, individual/collective, for-/not-for-profit. This lay normativity must be taken seriously to avoid theory-practice discrepancies, and to develop governance solutions that have a reasonable chance of success insofar as they are recognizable by actors in the field.
2. Conceptual: How viable are commons- and solidarity-based governance approaches in the context of this new model of health research?
We will explore the limitations of approaches that seek to increase collective agency and control over personal health data – namely commons- and solidarity-based models – in light of the empirical mapping. Where are these (in)adequate and where can they be improved?
3. Normative: What would good governance look like in the context of GHR?
These findings will be systematized into a new normative framework that seeks to produce common benefit and promote meaningful participation, yet is attuned to the empirical reality of GHR. This involves making explicit value trade-offs involved in different repertoires and combinations of repertoires, critically analyzing them and identifying best practices.
The project will develop a normative framework that can both foreground collective benefit all the while accounting for this ethical plurality. To do this, our team will first map the different conceptions of the common good – or “moral repertoires” – that motivate actors in several GHR-type collaborations, drawing on the framework of justification analysis (Boltanski and Thévenot, 2006). Fieldwork will take place at sites in Europe and in the US. Using an empirical-philosophical methodology, we will then 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 in light of this. Finally, these results will be integrated into a novel, empirically-robust normative framework for GHR type collaboration that can offer guidance to research ethicists and policy makers.