Ethical Considerations in Pervasive Health Research

Haley MacLeod, Maia Jacobs, Katie Siek, Kay Connelly, Elizabeth D. Mynatt

Research output: Contribution to journalConference articlepeer-review

5 Scopus citations

Abstract

The pervasive health field has matured over the last few decades and the community has begun to converge on commonly accepted practices. In this work, we argue for a need to consider the ethical implications of the choices we make as researchers, particularly when working with vulnerable or sensitive populations. We outline a number of considerations that should be given more attention moving forward. We discuss these considerations as they have emerged from our work with people with rare diseases and with newly diagnosed breast cancer patients, both sensitive communities requiring a careful attention to ethics. We organize these ethical considerations around two main themes: the importance of involving participants in the research process and the need for flexible approaches to both research methods and the design of tools. We provide recommendations for researchers towards a successful, ethical future of pervasive health research.

Original languageEnglish (US)
Pages (from-to)326-329
Number of pages4
JournalPervasiveHealth: Pervasive Computing Technologies for Healthcare
Volume2016-January
StatePublished - 2016
Event10th EAI International Conference on Pervasive Computing Technologies for Healthcare, PervasiveHealth 2016 - Cancun, Mexico
Duration: May 16 2016May 19 2016

Keywords

  • breast cancer
  • community based research
  • ethics
  • patient advocates
  • patient empowerment
  • personalization
  • Pervasive health
  • privacy
  • rare diseases
  • research methods

ASJC Scopus subject areas

  • Computer Networks and Communications
  • Information Systems
  • Computer Science Applications
  • Health Informatics

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