Research Participants in the Digital Age – a First Hand Perspective

Behavioral scientists utilize mobile imaging, pervasive sensing, social media, and location tracking (MISST) technologies to observe and intervene with research participants in their natural environment. With the variety of sensor-embedded wearables, collecting data about human behavior is now much easier and likely more accurate. Since pervasive sensing technologies can provide real-time data in context, researchers can customize interventions tailored to the individual; for example, study participants could receive a reminder as they pass by their gym or a local park if they haven’t yet met their physical activity goal for that day. Alternatively, they could receive encouragement to make healthy choices in the grocery store, based on GPS data streamed from their phone. However, despite the exciting potential for benefits, MISST technologies introduce new ethical challenges to consider.

We recently published a paper in the Journal of Translational Behavioral Medicine entitled “Engaging Research Participants To Inform The Ethical Conduct Of Mobile Imaging, Pervasive Sensing, And Location Tracking” (September 29, 2016).1 In this paper, we introduced a study called iWatch, in which participants wore five sensors: three accelerometers, a GPS device and an outwardly facing camera called SenseCam. This observational study was designed to assess the feasibility of using these tools to observe and measure participant behavior in a “free living” environment. These tools provide alternatives to laboratory-based research and reliance on self-reported behaviors, enabling scientists to passively collect data on participants in “the wild” in order to personalize behavioral interventions. Devices that transmit data would allow researchers to intervene in real time, though that was not the case in this study.

The study required review by an IRB prior to launch. The board’s concerns focused primarily on privacy protections and data security. Beyond consideration of the study’s subjects, the IRB noted potential risks to people who were not subjects but were in close proximity and could be captured in images by the SenseCam device. It was the latter that posed the greatest concern to the IRB – yet, since little guidance exists around the protection of bystanders, it was not clear whether the IRB should make that their concern. Lacking empirical evidence to guide risk assessment, the research team worked with the IRB to identify possible risks and strategies to minimize potential harm to participants.

The iWatch principal investigator and collaborators first developed an ethical framework to guide the planning and design of studies that included an automated, wearable camera.2 The framework aligned with principles of the Belmont Report and spelled out steps thought to improve protections for both research participants and bystanders. While not a common practice, the researchers spoke with participants upon completion of study tasks to assess their first-hand experience. Participants who had completed the one-week study were invited to review the SenseCam images and complete an exit survey. The exit survey was designed to learn about participant perceptions and experiences regarding consent information, privacy protection strategies, bystander response, and impressions of and desire to delete digital images.

Interestingly, participant concerns focused less on privacy and bystander response (concerns the IRB raised) and more on the physicality of wearing the devices (i.e. discomfort, irritation). The data suggests that participants may have viewed the potential loss of privacy as “worth” the opportunity to contribute to research. Moving forward with research involving pervasive and passive sensing requires that researchers more frequently involve the participants as partners and solicit their insights to improve the informed consent content and process as well as develop other strategies to increase participant understanding of their data and control over contributions.

To facilitate more collaboration between stakeholders in the digital research space, we have built a web-based platform called the Connected and Open Research Ethics or CORE initiative. The CORE features a community of nearly 200 stakeholders who self-identify primarily as researchers or IRB affiliates; however, around 15% identify as participants, ethical, legal, social implications (ELSI) and privacy officers. What brings these people to the CORE is a common interest in the ethical design and efficient and meaningful review of research using MISST tools/methods. In addition, the CORE Platform hosts a Question & Answer Forum and a Resource Library containing excerpts of IRB-approved language used to describe study procedures in both the research protocol and informed consent documents. Take a look at the CORE Tutorial and, If you are interested in participating, please join the CORE Network.

Camille Nebeker, EdD, MS is the Principal Investigator of the CORE program, and Assistant Professor, Behavioral Medicine, Center for Wireless and Population Health Systems, Qualcomm Institute at UC San Diego. Katie Crist, MPH and Rubi Linares-Orozco, MAS, both of UC San Diego, contributed to this Ampersand post. The CORE initiative is supported by the Robert Wood Johnson Foundation and the UC San Diego Chancellor’s Interdisciplinary Collaboratory Fellows program.

  1. Nebeker, C., Lagare, T., Takemoto, M., Lewars, B., Crist, K., Bloss, C. and Kerr, J. (2016). Engaging participants to inform the ethical conduct of mobile imaging, pervasive sensing and location tracking research. Translational Behavioral Medicine: Policy, Practice, Research. (Online First) doi:10.1007/s13142-016-0426-4
  2. Kelly P, Marshall S, Badland H, Kerr J. An Ethical Framework for automated, wearable cameras in health behavior research. Am J Prev Med. 2013:1–6. Available at: