Post-mortem privacy 2.0: theory, law, and technology

Abstract

This paper builds on the general survey of post-mortem privacy set out in the author's earlier work. The concept of post-mortem privacy is further developed both at a theoretical level (underpinned by theories of autonomy) and a doctrinal level (considering concepts such as testamentary freedom, and the protection of personal data). Finally, the paper looks at some current developments of technology (tech solutions for the protection of post-mortem privacy) and law/policy (work done by the US Uniform Law Commission on the Uniform Fiduciary Access to Digital Assets Act-UFADAA). The argument is that both of these regulatory modalities provide examples and illustrations of how post-mortem privacy can be recognised practically, especially in the online environment. The paper is, therefore, setting the scene further in this under-explored area, also aiming to set the basis for the author's subsequent empirical research (attitudes towards postmortem privacy, quantitative and qualitative).

The Ethics of Medical Data Donation

“…In the European legal doctrine and jurisprudence as well, it has been long established that the data protection regime is based on human rights (the ECHR and the European Charter of fundamental rights) and propertisation and commodification of personal data is not an option in any of the EU member states, including the post-Brexit UK (Harbinja 2013(Harbinja , 2017Pearce 2018). Consequently, there can be no succession or bequeathing of one's data, as stricto sensu, only property can be passed onto one's next of kin and heirs (Harbinja 2017). An option of deciding as to what happens to one's patient records is not viable under the succession and probate regime at the moment either.…”

“…Researchers argue that this is unreasonable and that there should be options for individuals to decide what happens to their data on death. (Harbinja 2017;Castex et al 2018). This is now possible for some digital assets such as emails or social network content in France or Catalonia, however, this does not include one's medical records and data, and therefore, it is not particularly helpful as a framework for PMDD.…”

“…In a very broad sense, postmortem privacy includes the protection of one's body parts and organs, and the narrow interpretation includes the protection of personal data only, and thus covers patient records as well. Research shows that this phenomenon is only partially protected Harbinja 2017;) and there is not a comprehensive regime that would include data protection reform, as well as the necessary regulation of digital assets associated with the deceased's online footprints and digital persona. The UK has not followed the lead of France or the US to legislate on this matter and the DPA 2018 excludes the data of the deceased completely, as noted above.…”

“…In a playful and exciting episode, BBC Tomorrow's world has discussed this attractive idea, trying to invoke some of the current issues related to the use and misuse of our digital footprints and personal data. 1 Individuals are often not aware as to what happens to these digital footprints post-mortem, and the law and policy in this area are still very confusing and inconsistent (Harbinja 2017). But what if we shift this paradigm and enable users to employ their altruistic motivations and aspirations by helping them participate in 'citizen's science' and medical research through donating their medical data posthumously ?…”

Posthumous Medical Data Donation: The Case for a Legal Framework

“…In a playful and exciting episode, BBC Tomorrow's world has discussed this attractive idea, trying to invoke some of the current issues related to the use and misuse of our digital footprints and personal data. 1 Individuals are often not aware as to what happens to these digital footprints post-mortem, and the law and policy in this area are still very confusing and inconsistent (Harbinja 2017). But what if we shift this paradigm and enable users to employ their altruistic motivations and aspirations by helping them participate in 'citizen's science' and medical research through donating their medical data posthumously (Vayena and Tasioulas 2015)?…”