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

Edina Harbinja, Henry Pearce

Research output: Contribution to journalArticle

Abstract

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.
Original languageEnglish
Article number105403
JournalComputer Law and Security Review
Volume36
Early online date3 Mar 2020
DOIs
Publication statusPublished - Apr 2020

Bibliographical note

© 2020, Elsevier. Licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International http://creativecommons.org/licenses/by-nc-nd/4.0/

Keywords

  • data donation
  • organ donation
  • privacy
  • post-mortem privacy
  • patient records
  • health data

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