Lotje Siffels
Digital Good. The Digital Disruption of Health Research and the Common Good in Europe: an Empirical-Philosophical Study
Department of Practical Philosophy, Radboud University, [email protected]
Supervisors: Dr. Tamar Sharon and Prof. dr. Jean-Pierre Wils
Background
I obtained two bachelor’s degrees from the University of Amsterdam, one in history and one in philosophy. I did my research master at Utrecht University where I started gaining interest in digital ethics and philosophy of technology. In my thesis I tried to develop a relational conception of privacy, where privacy is a space for self-reflection. During and after my studies I worked at the Utrecht Data School as a junior researcher on the digitalization in Dutch local government. There my interest in a more interdisciplinary and empirical approach to philosophy and the topic of digital transformation or disruption.
Summary PhD project
The increasing involvement of large consumer tech companies like Google, Apple and Amazon in the domain of health research is causing a disruption of this domain. New types of collaborations between medical researchers and these consumer tech companies are giving shape to a new model of research. These collaborations often go together with the usage of new technologies for doing research, using data mining and wearable devices to monitor patients more constantly and individually. These changes challenge us to rethink the conceptions we have of the common good in the health domain as well as how health research should be governed.
My PhD will be part of a larger project investigating this disruption of health research. The aim of the overall project is to develop a normative framework for data governance in these collaborations. For this we will not use a top-down, but rather a bottom-up philosophical approach using methods of qualitative empirical research. We will use an empirical philosophical approach, investigating a couple of case studies in Europe and the US. The first step will be to map the moral repertoires that are present in these collaborations, using the framework of justification of Boltanski and Thévenot (2006). This framework allows for a plurality of conceptions of the common good. It can show that there are several notions of the common good relied upon by actors in the health domain. These different conceptions of the common good may be mobilized by actors in the domain to justify their actions or to criticize other conceptions. Between these repertoires then, there will be value trade-offs. I will do the field work into three case studies in Europe. The second step of the project will be to evaluate the repertoires and the trade-offs being made and use this to develop the normative framework.
