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Data Donations as Exercises of Sovereignty

In Peter Dabrock, Matthias Braun & Patrik Hummel (eds.), The Ethics of Medical Data Donation. Springer Verlag (2019)

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  1. Own Data? Ethical Reflections on Data Ownership.Patrik Hummel, Matthias Braun & Peter Dabrock - 2020 - Philosophy and Technology 34 (3):545-572.
    In discourses on digitization and the data economy, it is often claimed that data subjects shall beownersof their data. In this paper, we provide a problem diagnosis for such calls fordata ownership: a large variety of demands are discussed under this heading. It thus becomes challenging to specify what—if anything—unites them. We identify four conceptual dimensions of calls for data ownership and argue that these help to systematize and to compare different positions. In view of this pluralism of data ownership (...)
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  • Just data? Solidarity and justice in data-driven medicine.Matthias Braun & Patrik Hummel - 2020 - Life Sciences, Society and Policy 16 (1):1-18.
    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 (...)
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