Your data will never die, but you will: A comparative analysis of US and UK post-mortem data donation frameworks


Posthumous medical data donation (PMDD) for the purpose of legitimate, non-commercial and, potentially, very beneficial medical research has been sparsely discussed in legal scholarship to date. Conversely, quite an extensive social science and humanities research establishes benefits of this practice. It also finds that PMDD enables individuals to employ their altruistic motivations and aspirations by helping them participate in ‘citizen’s science’ and medical research, thus supporting efforts in finding cures for some of the acutest diseases of today. There appears to be no jurisdiction where a regulatory framework supports and enables PMDD. This paper analyses whether and to what extent law and policy should enable this practice. We take a comparative approach, examining the position under both US and UK law, providing the first comparative legal account of this practice. We do not aim to suggest a detailed legal solution for PMDD, but rather key considerations and principles for legislative/policy reforms, which would support the practice of PMDD. We discuss organ donation and provide a comparative outlook with the aim of drawing lessons from this practice, and applying them to the regulation of PMDD. Our analysis is both normative and black letter since we consider arguments regarding the necessity of organ and data donation, as well as the law that regulates these practices.

Publication DOI:
Divisions: Aston Business School
Aston Business School > Law
Additional Information: © 2020, Elsevier. Licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International
Uncontrolled Keywords: data donation,organ donation,privacy,post-mortem privacy,patient records,health data
Full Text Link: https://papers. ... ract_id=3536264
Related URLs: https://www.sci ... 26736492030008X (Publisher URL)
PURE Output Type: Article
Published Date: 2020-04
Published Online Date: 2020-03-03
Accepted Date: 2020-02-06
Authors: Harbinja, Edina ( 0000-0003-2779-8959)
Pearce, Henry



Version: Accepted Version

Access Restriction: Restricted to Repository staff only until 3 March 2021.

License: Creative Commons Attribution Non-commercial No Derivatives

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