Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research

Abstract

In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health research, its intrinsic value is grounded in respect for the dignity of the post-mortem informational entity. However, existing guidance on post-mortem data protection is available only in the context of genetic studies. In comparing the characteristics of genetic data and other health-related data, we identify two features of DNA often given as arguments for this genetic exceptionalism: relationality and embodiment. We use these concepts to show that at the appropriate Level of Abstraction, there is no morally relevant distinction between posthumous genetic and other health data. Thus, genetic data should not automatically receive special moral status after death. Instead we make a plea for ‘contextual exceptionalism’. Our analysis concludes by reflecting on a real-world case and providing suggestions for contextual factors that researchers and oversight bodies should take into account when designing and evaluating research projects with health data from deceased subjects.

A Survey of Individuals’ Willingness to Share Real-World Data Post-Mortem with Researchers

“…This includes but is not limited to work describing meta-consent versus potentially controversial uses of broad consent, use of data without consent when considered ethically or morally permissible, and 'contextual exceptionalism' that would require evaluating uses of data from deceased individuals on a caseby-case basis by research ethics committees. [21][22][23] Such work can be useful for practicing researchers and research oversight boards to identify or develop best practices and consent tools, especially in cases where post-mortem data privacy laws might be either nonexistent or vague in covering a wide range of data sources used for research purposes.…”

Information science and the inevitable: A literature review at the intersection of death and information management: An Annual Review of Information Science and Technology (ARIST) paper

“…Similar and further issues can occur in the handling of the health data of the deceased (Bak & Willems, 2022;Krutzinna et al, 2019b). The donation of personal health data in particular is a complex and multifaceted issue where the deceased are prominently considered, for example in a recent book covering relevant concepts, governance, use, and ethics (Krutzinna & Floridi, 2019).…”

“…The donation of personal health data in particular is a complex and multifaceted issue where the deceased are prominently considered, for example in a recent book covering relevant concepts, governance, use, and ethics (Krutzinna & Floridi, 2019). Although that book concludes with an ethical code for posthumous medical data donation (Krutzinna et al, 2019a), advice for ethical handling of broader contexts of post‐mortem data benefit so far only from proposals to exercise contextual exceptionalism ; that is, posthumous data should be respected, treated with care, and handled as befits the particular context (Bak & Willems, 2022; Bollmer, 2013).…”

“…What could and should happen to digital possessions made by or about us? These matters include but extend beyond social media: many individuals keep large, offline digital collections (Dinneen et al, 2019) and rarely prepare their digital collections for transfer to families or institutions (Krtali c et al, 2021), and the deceased are not mentioned by most data protection acts (Bak & Willems, 2022). Thus further specific questions remain open, such as: how does death figure into information behavior, and vice versa?…”