Medical Data Donation, Consent and the Public Interest After Death: A Gateway to Posthumous Data Use

Abstract

Posthumous medical data donation (PMDD) could deliver a longitudinal dataset that facilitates significant advances in health research. This chapter focuses on a central challenge of PMDD, namely what good governance looks like in circumstances where consent does not provide a ‘single magic bullet’. The central argument is that consent in PMDD must be properly understood as merely one aspect of a holistic governance regime, and that more emphasis ought to be placed on the role of authorisation. This brings to the fore the potential role of the public interest in navigating the various interests in play. As will be demonstrated, this proposed re-orientation of governance could deliver tangible benefits in PMDD and enhance three key elements of good governance: transparency, accountability and engagement with evidence of the views of actual publics. Part I outlines the impetus for the examination of PMDD in the context of the (non)delivery of the ‘data sharing revolution’. Part II considers the pressure that temporal aspects of PMDD exert on traditional notions of consent, and the interests this brings into play. Finally, Part III suggests that authorisation should have a role to play alongside consent.