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Defining Data Donation After Death: Metadata, Families, Directives, Guardians and the Route to Big Consent

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

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  1. Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Marieke A. R. Bak & Dick L. Willems - 2022 - Science and Engineering Ethics 28 (4):1-20.
    In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health (...)
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