University student’s perceptions of self-tracking devices, data privacy, and sharing digital data for research purposes
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Purpose: Wearable physical activity monitors present new ethical considerations for researchers and research ethics boards. Best practice guidelines are needed for research involving wearable monitors and should consider how these devices may impact participants outside of the research context. This study examines the perceptions of university students who wore activity monitors for research purposes in order to inform such guidelines. Methods: Focus groups were held with university students who wore digital self-tracking devices for a study examining sleep and physical activity. Questions focused on motivations to wear a physical activity monitor for research, understandings of how personal digital data generated by self-tracking devices are used and accessed, and perceptions of privacy. Results: 83% of students trusted the research process and were motivated to contribute to scientific knowledge by wearing a digital tracking device. Most (83%) understood how their data were used and accessed for research purposes, but 79% were less clear on how data might be accessed and used by third parties. 79% of participants also agreed that different data carries different social and personal implications and thus should not be treated the same by researchers. Conclusions: Protocols for research involving wearable monitors should include briefing/debriefing sessions to clarify data privacy, storage, and use issues. Researchers should also consider how wearing these devices might prompt unexpected emotional and other responses and the social implications of use for participants. The concept of privacy requires further exploration in the context of digital data collection using commercial devices.