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. (shrink)

It has been suggested that to overcome the challenges facing the UK’s National Health Service (NHS) of an ageing population and reduced available funding, the NHS should be transformed into a more informationally mature and heterogeneous organisation, reliant on data-based and algorithmically-driven interactions between human, artificial, and hybrid (semi-artificial) agents. This transformation process would offer significant benefit to patients, clinicians, and the overall system, but it would also rely on a fundamental transformation of the healthcare system in a way that (...) poses significant governance challenges. In this article, we argue that a fruitful way to overcome these challenges is by adopting a pro-ethical approach to design that analyses the system as a whole, keeps society-in-the-loop throughout the process, and distributes responsibility evenly across all nodes in the system. (shrink)