Medical data donation, consent and the public interest after death: A gateway to posthumous data use

Research output: Chapter in Book/Report/Conference proceedingChapter (peer-reviewed)peer-review

Abstract

Posthumous medical data donation (PMDD) could deliver a longitudinal dataset that facilitates significant advances in health research. This article 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 of the article suggests that authorisation should have a role to play alongside consent.
Original languageEnglish
Title of host publicationThe Ethics Of Medical Data Donation
EditorsJenny Krutzinna, Luciano Floridi
PublisherSpringer
Chapter7
Pages115-130
Number of pages16
ISBN (Electronic)9783030043636
ISBN (Print)9783030043629
DOIs
Publication statusPublished - 12 Feb 2019

Publication series

NamePhilosophical Studies Series
PublisherSpringer
Volume137
ISSN (Print)0921-8599
ISSN (Electronic)2542-8349

Keywords

  • posthumous
  • medical
  • donation
  • consent
  • governance
  • authorisation
  • data

Fingerprint

Dive into the research topics of 'Medical data donation, consent and the public interest after death: A gateway to posthumous data use'. Together they form a unique fingerprint.

Cite this