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.
CITATION STYLE
Hummel, P., & Braun, M. (2020). Just data? Solidarity and justice in data-driven medicine. Life Sciences, Society and Policy, 16(1). https://doi.org/10.1186/s40504-020-00101-7
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