Format

Send to

Choose Destination
AJOB Empir Bioeth. 2017 Oct-Dec;8(4):266-276. doi: 10.1080/23294515.2017.1403980.

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

Author information

1
a Department of Family Medicine and Public Health , School of Medicine, University of California San Diego.
2
b Center for Wireless and Population Health Systems , Qualcomm Institute, University of California San Diego.
3
c Moores Cancer Center , University of California San Diego Health.
4
d Arizona State University Center for Policy Informatics.
5
e Regulatory Compliance , University of California San Diego Health.
6
f Department of Psychiatry , University of California San Diego.
7
g Department of Computer Science Engineering , University of California San Diego.

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.

KEYWORDS:

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

PMID:
29125425
DOI:
10.1080/23294515.2017.1403980
[Indexed for MEDLINE]

Supplemental Content

Loading ...
Support Center