The Ethics of Uncertainty for Data Subjects

Research output: Chapter in Book/Report/Conference proceedingChapterAcademicpeer-review

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43 Downloads (Pure)

Abstract

Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, knowledge, and capacity, and reducing hazard.

Original languageEnglish
Title of host publicationThe Ethics of Medical Data Donation
EditorsJ Krutzinna, L Floridi
Place of PublicationCham
PublisherSpringer
Chapter4
Pages55-74
Number of pages20
ISBN (Electronic)978-3-030-04363-6
ISBN (Print)978-3-030-04362-9
DOIs
Publication statusPublished - 2019

Publication series

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

Bibliographical note

Funding Information:
I would like to acknowledge the useful feedback I received on earlier versions of this paper from participants at workshops in Eindhoven, in Warwick, and at the Oxford Internet Institute. This research is affiliated with the Netherlands Organisation for Scientific Research Responsible Innovation (NWO-MVI) project ?Mobile Support Systems for Behaviour Change,? project number 100-23-616.

Publisher Copyright:
© The Author(s) 2019.

Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.

Keywords

  • Data professionalism
  • Ethics of data donation
  • Opacity of algorithms
  • Practical uncertainty
  • Privacy-by-design
  • Profiling
  • Systemic oversight
  • Trust
  • Value-based health care

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