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The Digital Disruption of Health Research and the Common Good. An Empirical-Philosophical Study

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

In the last three years, every major technology corporation, from Google to Apple, to Facebook and Amazon (GAFA), has moved decisively into health research. We are witnessing a digital disruption of health research – or what we might call a Googlization or GAFA-ization of health research (GHR) – whereby powerful consumer technology companies are becoming key facilitators of data-driven health research. The project begins with two assumptions: First, that the most pressing challenge at stake in GHR is the question of collective and societal benefit, and that existing governance frameworks that aim to increase individual control over data are ill-suited to address this. Second, GHR is a new phenomenon that emerges at the intersection of two trends that are typically thought of separately: digital health and digital capitalism. At this intersection, public and private, individual and collective, for- and not-for-profit motives are entangled in novel ways, that make these distinctions less useful reference points than in the past. Rather, diverse and competing conceptions of the common good and how to achieve them traverse and shape this landscape. This ground-breaking project will be the first wide-ranging and interdisciplinary study of this new model of health research. Its aim is to develop a normative framework for personal health data governance that can both enhance shared benefit and collective agency all the while accounting for the plurality of conceptions of the common good at work in GHR. It has three main objectives:

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.
In the first 18 months of the project we have completed the hiring procedure for the team, including one PhD candidate and two postdocs (some matching funding from my university allowed me to hire an additional postdoc). As a team we have consolidated our theoretical framework with a close reading of Boltanski and Thevenot’s work On Justification and begun identifying case studies. One round of interviews at Sage Bionetworks in Seattle has been completed in Nov. 2019, and initial interviews have been carried out in the Netherlands on the “Personalized Parkinson’s Project” case study. The latter interviews are being used as material for a co-authored paper that is in preparation and has been accepted as a conference presentation at the EASST/4S conference in Aug. 2020. The team has published a series of articles and research statements in a special issue of Ethics and Information Technology (forthcoming, see for example). We are organizing a conference panel entitled, “Thinking beyond privacy in the ethics of human-technology relations: The case of COVID-19 contact tracing apps” at the Philosophy of Human Technology Relations conference in Nov. 2020. Since March 2020, we are also participating in an international consortium project on solidarity in the times of corona led by the University of Vienna, including research design, interviewing, coding and analysis. Two papers on the use of contact-tracing apps are in preparation. PI Tamar Sharon has been invited to speak about the Digital Good project in numerous venues, including the 4TU Ethics bi-annual conference (keynote), the Dutch Ministry of Health, the Dutch Association for Philosophy and Health, and the “Digital health: ethical, legal and social perspective for a sustainable future” conference in Zagreb (keynote). One of the postdocs on the team is leaving for a permanent position. We are currently in the hiring process for a new member.
The project’s starting point is that the most pressing challenge at stake in this new model of research is less the question of individual privacy than the question of collective and societal welfare, and that existing governance frameworks that seek to increase individual control over data are ill-suited to address this. Commons- and solidarity-based approaches, which seek to enhance collective agency and control, are thus promising alternatives. However, these approaches allow for only one conception of the common good, while a plurality of competing conceptions are at work in GHR, from the common good understood as “increased efficiency” to the common good understood as “economic growth”, “better health” and “greater participation”. This plurality must be taken seriously to avoid theory-practice discrepancies and to develop viable governance solutions.

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.