Project description
Digital health research and collective welfare
Digital Good explores the ethical and societal challenges associated with the 'Googlisation of health': the entrance of large consumer technology companies such as Alphabet, Apple and Amazon into the domain of health and medicine. This phenomenon raises serious questions related to data privacy, ethical codes, and collective and societal welfare. Yet no governance structure has addressed these issues, to date. Team members will conduct fieldwork to map, analyse and critically evaluate the different conceptions of the common good that motivate various stakeholders participating in research collaborations between consumer tech firms and public research institutions. Fieldwork will take place at various sites in Europe and in the United States. The empirical findings will be used to develop a normative framework for data governance in this context that can account for different and competing conceptions of the common good
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.
Fields of science (EuroSciVoc)
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
CORDIS classifies projects with EuroSciVoc, a multilingual taxonomy of fields of science, through a semi-automatic process based on NLP techniques. See: The European Science Vocabulary.
You need to log in or register to use this function
We are sorry... an unexpected error occurred during execution.
You need to be authenticated. Your session might have expired.
Thank you for your feedback. You will soon receive an email to confirm the submission. If you have selected to be notified about the reporting status, you will also be contacted when the reporting status will change.
Keywords
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Project’s keywords as indicated by the project coordinator. Not to be confused with the EuroSciVoc taxonomy (Fields of science)
Programme(s)
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
Multi-annual funding programmes that define the EU’s priorities for research and innovation.
-
H2020-EU.1.1. - EXCELLENT SCIENCE - European Research Council (ERC)
MAIN PROGRAMME
See all projects funded under this programme
Topic(s)
Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Calls for proposals are divided into topics. A topic defines a specific subject or area for which applicants can submit proposals. The description of a topic comprises its specific scope and the expected impact of the funded project.
Funding Scheme
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
Funding scheme (or “Type of Action”) inside a programme with common features. It specifies: the scope of what is funded; the reimbursement rate; specific evaluation criteria to qualify for funding; and the use of simplified forms of costs like lump sums.
ERC-STG - Starting Grant
See all projects funded under this funding scheme
Call for proposal
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
Procedure for inviting applicants to submit project proposals, with the aim of receiving EU funding.
(opens in new window) ERC-2018-STG
See all projects funded under this callHost institution
Net EU financial contribution. The sum of money that the participant receives, deducted by the EU contribution to its linked third party. It considers the distribution of the EU financial contribution between direct beneficiaries of the project and other types of participants, like third-party participants.
6525 XZ Nijmegen
Netherlands
The total costs incurred by this organisation to participate in the project, including direct and indirect costs. This amount is a subset of the overall project budget.