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Just data? Solidarity and justice in data-driven medicine
Patrik Hummel1, Matthias Braun2
1Department of Theology, Friedrich-Alexander University Erlangen-Nürnberg (FAU), Kochstraße 6, 91054, Erlangen, Germany. patrik.hummel@fau.de.
Abstract:
This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between the good and the right, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of the good. Enacting solidarity drives progress in research and clinical practice. At the same time, such acts of sharing could-especially considering current developments in big data and artificial intelligence-compromise the right by leading to injustices and affecting concrete modes of individual self-determination. In order to address this potential tension, two key elements for ethical reflection on data-driven medicine are proposed: the controllability of information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towards output-orientation in governance and policy.
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