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Digital Good SIGNED

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

Total Cost €

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EC-Contrib. €

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Partnership

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Project "Digital Good" data sheet

The following table provides information about the project.

Coordinator
STICHTING KATHOLIEKE UNIVERSITEIT 

Organization address
address: GEERT GROOTEPLEIN NOORD 9
city: NIJMEGEN
postcode: 6525 EZ
website: www.radboudumc.nl

contact info
title: n.a.
name: n.a.
surname: n.a.
function: n.a.
email: n.a.
telephone: n.a.
fax: n.a.

 Coordinator Country Netherlands [NL]
 Total cost 1˙323˙473 €
 EC max contribution 1˙323˙473 € (100%)
 Programme 1. H2020-EU.1.1. (EXCELLENT SCIENCE - European Research Council (ERC))
 Code Call ERC-2018-STG
 Funding Scheme ERC-STG
 Starting year 2019
 Duration (year-month-day) from 2019-01-01   to  2023-12-31

 Partnership

Take a look of project's partnership.

# participants  country  role  EC contrib. [€] 
1    STICHTING KATHOLIEKE UNIVERSITEIT NL (NIJMEGEN) coordinator 1˙323˙473.00

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 Project objective

In the last three years, every major consumer technology company has moved into the health research domain. We are witnessing a digital disruption of health research, or a “Googlization of health research” (GHR). This project will be the first wide-ranging, interdisciplinary study of GHR. Its aim is to develop a normative framework for personal health data governance in this setting, where digital health and digital capitalism, and codes of research ethics and the lawlessness of the Internet economy, intersect.

I contend 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, including “increased efficiency”, “greater inclusivity”, and “economic growth”. 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, my team will first map the different conceptions of the common good – or “moral repertoires” – that motivate actors in several GHR-type collaborations. 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 in light of this. Finally, these results will be integrated into a novel, empirically-robust normative framework that can offer guidance to research ethicists and policy makers.

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The information about "DIGITAL GOOD" are provided by the European Opendata Portal: CORDIS opendata.

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