Your Data Will Never Die, but You Will: A Comparative Analysis of US and UK Postmortem Data Donation Frameworks

Computer Law and Security Review (CLSR), Forthcoming

20 Pages Posted: 8 Mar 2020

See all articles by Edina Harbinja

Edina Harbinja

Aston University

Henry Pearce

University of Southampton; University of Portsmouth

Date Written: February 06, 2020

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.

Keywords: posthumous data donation, patient records, health data, post-mortem privacy, organ donation, UK, US

Suggested Citation

Harbinja, Edina and Pearce, Henry, Your Data Will Never Die, but You Will: A Comparative Analysis of US and UK Postmortem Data Donation Frameworks (February 06, 2020). Computer Law and Security Review (CLSR), Forthcoming , Available at SSRN: https://ssrn.com/abstract=3536264

Edina Harbinja (Contact Author)

Aston University ( email )

United Kingdom

Henry Pearce

University of Southampton ( email )

University Rd.
Southampton SO17 1BJ, Hampshire SO17 1LP
United Kingdom

University of Portsmouth ( email )

University House
Winston Churchhill Avenue
Portsmouth, Hampshire PO1 2UP
United Kingdom

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