Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives. Nebeker, C., Harlow, J., Espinoza Giacinto, R., Orozco-Linares, R., Bloss, C. S., & Weibel, N. AJOB empirical bioethics, 8(4):266–276, December, 2017. doi abstract bibtex 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.
@article{nebeker_ethical_2017,
title = {Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: {IRB} perspectives},
volume = {8},
issn = {2329-4523},
shorttitle = {Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies},
doi = {10.1080/23294515.2017.1403980},
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.},
language = {eng},
number = {4},
journal = {AJOB empirical bioethics},
author = {Nebeker, Camille and Harlow, John and Espinoza Giacinto, Rebeca and Orozco-Linares, Rubi and Bloss, Cinnamon S. and Weibel, Nadir},
month = dec,
year = {2017},
pmid = {29125425},
keywords = {Confidentiality, Ethics Committees, Research, Ethics, Research, Focus Groups, Geographic Information Systems, Government Regulation, Health Records, Personal, Humans, IRB, Privacy, Research Subjects, Social Media, United States, Wireless Technology, location tracking, pervasive sensing, research ethics, social media},
pages = {266--276},
}
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