Skip to main content
SpringerLink
Log in

Engaging research participants to inform the ethical conduct of mobile imaging, pervasive sensing, and location tracking research

  • Original Research
  • Published:
Translational Behavioral Medicine

Abstract

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3

Similar content being viewed by others

Notes

  1. Reprinted from American Journal of Preventive Medicine 2013; 44(3): 314-319, Kelly, P. et al. “An Ethical Framework for Automated, Wearable Cameras in Health Behavior Research” with permission from Elsevier.

References

  1. Kumar S, Nilsen WJ, Abernethy A, et al. Mobile health technology evaluation: the mHealth evidence workshop. Am J Prev Med. 2013; 45(2): 228-236. doi:10.1016/j.amepre.2013.03.017.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Jankowska M, Schipperjin J, Kerr J. A framework for using GPS data in physical activity and sedentary behavior studies. Exerc Sport Sci Rev. 2015; 43(1): 48-56.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Zenk S, Schulz A, Odoms-Young A, et al. Feasibility of using Global Positioning Systems (GPS) with diverse urban adults. J Phys Act Health. 2012; 9: 290-296.

    Google Scholar 

  4. Kerr J, Marshall SJ, Godbole S, et al. Using the SenseCam to improve classifications of sedentary behavior in free-living settings. Am J Prev Med. 2013; 44(3): 290-296. doi:10.1016/j.amepre.2012.11.004.

    Article  PubMed  Google Scholar 

  5. Doherty AR, Kelly P, Kerr J, et al. Use of wearable cameras to assess population physical activity behaviours: an observational study. Lancet. 2012; 380: S35. doi:10.1016/S0140-6736(13)60391-8.

    Article  Google Scholar 

  6. Doherty AR, Kelly P, Kerr J, et al. Using wearable cameras to categorise type and context of accelerometer-identified episodes of physical activity. Int J Behav Nutr Phys Act. 2013; 10: 22. doi:10.1186/1479-5868-10-22.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Oliver M, Doherty AR, Kelly P, et al. Utility of passive photography to objectively audit built environment features of active transport journeys: an observational study. Int J Health Geogr. 2013; 12: 20. doi:10.1186/1476-072X-12-20.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Hodges S, Williams L, Berry E, et al. SenseCam: a retrospective memory aid. In: Ubicomp 2006, LNCS 4206. 2006; 177–93. doi:10.1007/11853565.

  9. Nebeker C, Linares-Orozco R, Crist K. A multi-case study of research using mobile imaging, sensing and tracking technologies to objectively measure behavior. J Res Adm. 2015; 46(1): 118-137.

    Google Scholar 

  10. US Department of Health and Human Services. Protection of human subjects. 45 CFR 46. 1964.

  11. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report: ethical principles and guidelines for the protection of human subjects of research. 1978. Available at: http://ohsr.od.nih.gov/guidelines/belmont.html.

  12. 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: http://www.sciencedirect.com/science/article/pii/S0749379712008628.

  13. Anderson EE, Dubois JM. IRB decision-making with imperfect knowledge: a framework for evidence-based research ethics review. J Law, Med Ethics. 2012; 40(4): 951-969. doi:10.1111/j.1748-720X.2012.00724.x.

    Article  Google Scholar 

  14. Christie G, Patrick K, Schmuland D. Consultation for collective action on personalized health technology: eliminating the ethical, legal and social barriers for individual and societal benefit. J Health Commun. 20:867–868.

Download references

Acknowledgments

We would like to thank the iWatch participants for contributing to this study. We also acknowledge Lindsay Dillon, MPH, who contributed to the development of the survey and Elizabeth Booen, MS, who assisted with the data management.

This study was conducted with the participants from the NCI-funded Validating Machine-Learned Classifiers of Sedentary Behavior and Physical Activity study (PI Kerr, Grant # R01CA164993, IRB # 111160). We also acknowledge the Robert Wood Johnson Foundation’s support of the Connected and Open Research Ethics (CORE) initiative (PI Nebeker, #72876, 2015-2017) and the Impact of Privacy Environments for Personal Health Data on Patients (PI Bloss, R01 HG HG008753)

Author information

Authors and Affiliations

  1. Center for Wireless and Population Health Systems, The Qualcomm Institute, Calit2, La Jolla, CA, USA

    Camille Nebeker EdD, MS, Michelle Takemoto BS, BA, PhDc, Cinnamon S. Bloss PhD & Jacqueline Kerr PhD

  2. Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, CA, USA

    Camille Nebeker EdD, MS, Tiffany Lagare MPH, Michelle Takemoto BS, BA, PhDc, Brittany Lewars MPH, Katie Crist MPH, Cinnamon S. Bloss PhD & Jacqueline Kerr PhD

  3. Department of Psychiatry, School of Medicine, University of California, San Diego, CA, USA

    Cinnamon S. Bloss PhD

Authors
  1. Camille Nebeker EdD, MS
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Tiffany Lagare MPH
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Michelle Takemoto BS, BA, PhDc
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Brittany Lewars MPH
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Katie Crist MPH
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Cinnamon S. Bloss PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Jacqueline Kerr PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Camille Nebeker EdD, MS.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts to report.

Informed Consent Statement

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.

Additional information

Manuscript prepared for re-submission to Translational Behavioral Medicine

Implications

Practice: Stakeholders, including institutional review boards (IRBs), behavioral scientists, and research participants must work collaboratively to advance evidence-based ethical practices responsive to research using emerging technologies.

Policy: Regulations and ethical practices for human research protections must evolve to meet the needs of dynamic twenty-first century science.

Research: There is a growing need for empirical research to 1—“inform” the informed consent process, 2—qualify and quantify the magnitude and probability of potential risks, and 3—guide data management strategies when collecting new forms of personal health data.

APPENDIX

APPENDIX

iWatch Exit Survey version 2: 041514

iWatch Exit Interview

Thank you for participating in the iWatch study this week. We are interested in learning more about your experience with the devices.

Please answer the following questions.

figure afigure a

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Nebeker, C., Lagare, T., Takemoto, M. et al. Engaging research participants to inform the ethical conduct of mobile imaging, pervasive sensing, and location tracking research. Behav. Med. Pract. Policy Res. 6, 577–586 (2016). https://doi.org/10.1007/s13142-016-0426-4

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s13142-016-0426-4

Keywords

Search

Navigation