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Data Donation: How to Resist the iLeviathan

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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  • Better governance starts with better words: why responsible human tissue research demands a change of language.Annelien L. Bredenoord, Sarah N. Boers, Karin R. Jongsma & Michael A. Lensink - 2022 - BMC Medical Ethics 23 (1):1-10.
    The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...)
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