Just data? Solidarity and justice in data-driven medicine

This paper argues that data-driven medicine gives rise to a particular normative challenge. Against the backdrop of a distinction between thegoodand theright, harnessing personal health data towards the development and refinement of data-driven medicine is to be welcomed from the perspective of thegood. 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 therightby 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: thecontrollabilityof information flows, including technical infrastructures that are conducive towards controllability, and a paradigm shift towardsoutput-orientationin governance and policy.