Posthumous Medical Data Donation: The Case for a Legal Framework

Abstract

This article explores the options for establishing a legal framework for posthumous medical data donation (PMDD). This concept has not been discussed in legal scholarship to date at all. The paper is, therefore, a first legal study of PMDD, aiming to address the gap and shed light on the most significant legal issues that could affect this concept. The paper starts by looking at the protection of the deceased’s health records and medical data, finding that this protection in law is more extensive than the general protection of the deceased’s personal data, or the protection of post-mortem privacy as a concept. The paper then investigates key issues around ownership and succession of personal data, including medical and health-related data, and how these could affect PMDD and its legal framework. The author then goes on to explore some parallels with organ donation to determine whether there are some lessons to be learned from this comparable regulatory framework. The paper concludes with the discussion around the need for a Code for posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute, and a more formal regime that would enable and facilitate this practice. Here, the author proposes key law reforms in the area of data protection and governance related to PMDD. These reforms would include amendments to the general data protection ideally, to ensure harmonisation and consistency across the EU, as well as between the general and sector-specific data protection laws and policies. These changes would contribute to legal and regulatory clarity and would help implement this important and valuable practice, which aims to facilitate research and advances in medical treatments and care.