Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives

Camille Nebeker, John Harlow, Rebeca Espinoza Giacinto, Rubi Orozco-Linares, Cinnamon S. Bloss, Nadir Weibel

Research output: Contribution to journalArticlepeer-review

42 Scopus citations

Abstract

Vast quantities of personal health information and private identifiable information are being created through mobile apps, wearable sensors, and social networks. While new strategies and tools for obtaining health data have expanded researchers' abilities to design and test personalized and adaptive health interventions, the deployment of pervasive sensing and computational techniques to gather research data is raising ethical challenges for Institutional Review Boards (IRBs) charged with protecting research participants. To explore experiences with, and perceptions about, technology-enabled research, and identify solutions for promoting responsible conduct of this research we conducted focus groups with human research protection program and IRB affiliates. Our findings outline the need for increased collaboration across stakeholders in terms of: (1) shared and dynamic resources that improve awareness of technologies and decrease potential threats to participant privacy and data confidentiality, and (2) development of appropriate and dynamic standards through collaboration with stakeholders in the research ethics community.

Original languageEnglish (US)
Pages (from-to)266-276
Number of pages11
JournalAJOB Empirical Bioethics
Volume8
Issue number4
DOIs
StatePublished - Oct 2 2017

Keywords

  • IRB
  • location tracking
  • pervasive sensing
  • research ethics
  • social media

ASJC Scopus subject areas

  • Health(social science)
  • Philosophy
  • Health Policy

Fingerprint

Dive into the research topics of 'Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives'. Together they form a unique fingerprint.

Cite this