Engaging research participants to inform the ethical conduct of mobile imaging, pervasive sensing, and location tracking research.
Researchers utilize mobile imaging, pervasive sensing, social media, and location tracking (MISST) technologies to observe and intervene with participants in their natural environment. The use of MISST methods and tools introduces unique ethical issues due to the type and quantity of data, and produces raising new challenges around informed consent, risk assessment, and data management. Since MISST methods are relatively new in behavioral research, there is little documented evidence to guide institutional review board (IRB) risk assessment and inform appropriate risk management strategies. This study was conducted to contribute the participant perspectives when considering ethical and responsible practices. Participants (n = 82) enrolled in an observational study where they wore several MISST devices for 1 week completed an exit survey. Survey items focused on the following: 1-device comfort, 2-informed consent, 3-privacy protections, and 4-bystander engagement. The informed consent process reflected participant actual experience. Device comfort and privacy were raised as concerns to both the participants and bystanders. While the majority of the participants reported a positive experience, it is important to note that the participants were volunteers who were not mandated to wear tracking devices and that persons who are mandated may not have a similar response. Findings support strategies proposed in the Kelly et al. (2013) ethical framework, which emphasizes procedures to improve informed consent, protect privacy, manage data, and respect bystander rights when using a wearable camera.
Center for Wireless and Population Health Systems, The Qualcomm Institute, Calit2, La Jolla, CA, USA. nebeker@ucsd.eng.edu.|Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, CA, USA. nebeker@ucsd.eng.edu.
Camille
0000-0001-6819-1796
C
Nebeker
Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, CA, USA.
Tiffany
T
Lagare
Center for Wireless and Population Health Systems, The Qualcomm Institute, Calit2, La Jolla, CA, USA.|Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, CA, USA.
Michelle
M
Takemoto
Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, CA, USA.
Brittany
B
Lewars
Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, CA, USA.
Katie
K
Crist
Center for Wireless and Population Health Systems, The Qualcomm Institute, Calit2, La Jolla, CA, USA.|Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, CA, USA.|Department of Psychiatry, School of Medicine, University of California, San Diego, CA, USA.
Cinnamon S
CS
Bloss
Center for Wireless and Population Health Systems, The Qualcomm Institute, Calit2, La Jolla, CA, USA.|Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, CA, USA.
Jacqueline
J
Kerr
D000328:Adult; D000368:Aged; D035841:Behavioral Research; D040421:Cell Phone / Q000706:statistics & numerical data*; D003219:Confidentiality / Q000941:ethics*; D028744:Ethics Committees, Research / Q000941:ethics*; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D008297:Male; D008875:Middle Aged; D018907:Privacy; D012106:Research; D018570:Risk Assessment; D061108:Social Media; D014743:Videotape Recording / Q000941:ethics*
GIS; GPS; Geo-location; IRB; Informed consent; Institutional review board; Location tracking; Mobile health; Pervasive sensing; Privacy; Research ethics; SenseCam; Wearable camera; mHealth
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