Ethics and Ownership of Health Data: A Complex Conundrum

Pagliari, C. (Invited speaker)

Activity: Academic talk or presentation typesInvited talk

Description

Abstract:
We often hear the phrase “I own my data” in discussions about ethical issues in the sharing of health records and other personal information, but saying it doesn’t make it a reality. In this presentation Dr Claudia Pagliari, an eHealth expert and data ethicist from the University of Edinburgh, takes a lens to the notion of ownership to unpick what this really means, as a philosophical principle, a legal instrument, a technical construct, a psychological phenomenon and a social metaphor. This will be illustrated using examples from the worlds of healthcare practice, government analytics, academic research, the bio-pharmaceutical industry and the digital health sector. She will discuss some of the new ways in which citizens are seeking to enact ownership; such as through personal data curation and brokerage platforms; and how emerging technologies like blockchain are creating new opportunities for documenting ownership, as well as potential risks. Throughout this she will consider both the benefits and downsides of ownership and challenge the audience to identify the optimum balance. The aim is to highlight some of the complexities involved in handling the concept of health data ownership in the post-GDPR, post Cambridge-Analytica age, and the potential implications for consumers, health organisations, industry and society.
Period24 Sep 2018
Held atRoyal Society of Medicine, United Kingdom
Degree of RecognitionNational

Keywords

  • Ethics
  • Data Science
  • Health Informatics
  • Digital Health
  • Information Governance
  • Digital Society