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.
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 language | English |
|---|---|
| Article number | 105403 |
| Journal | Computer Law and Security Review |
| Volume | 36 |
| Early online date | 3 Mar 2020 |
| DOIs | |
| Publication status | Published - 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
- Health and medical data
- International data protection
- Organ donation
- Patient records
- Post-mortem privacy
- Posthumous medical data donation