APRIL 30, 2021
Camille Nebeker, EdD, MS
UCSD Design Lab
Herbert Wertheim School of Public Health and Human Longevity Science
Co-Founder and Director, Research Center for Optimal Digital Ethics – Health (ReCODE.Health)
University of California, San Diego
About the Presentation: Digital technologies, including apps, wearable sensors and social network platforms, offer unprecedented opportunities for health research and clinical care1,2. However, this rapidly evolving landscape is outpacing regulatory structures for protecting research participants3,4. Given the plethora of digital health tools and strategies, researchers are often challenged with deciding which tool is appropriate for their particular study. Dr. Nebeker and colleagues with the Research Center for Optimal Digital Ethics (ReCODE Health) have conducted research to inform responsible practices and have also developed support tools to aid researchers in ethical decision making (see https://recode.health/tools)5. The Digital Health Checklist and Framework is now used by researchers to evaluate risks/benefits, access, usability, privacy and data management protocols. Dr. Nebeker will describe how technologies are being leveraged to capture personal health data for research and draw attention to nuanced technical and ethical aspects that require careful consideration during the study design phase.
- Nilsen W, Kumar S, Shar A, et al. Advancing the Science of mHealth.J Health Commun. 2012;17(sup1):5-10. doi:10.1080/10810730.2012.677394
- 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
- Nebeker C, Harlow J, Espinoza Giacinto R, Orozco-Linares R, Bloss CS, Weibel N. Ethical and regulatory challenges of research using pervasive sensing and other emerging technologies: IRB perspectives.AJOB Empir Bioeth. 2017;8(4):266-276. doi:10.1080/23294515.2017.1403980
- Bloss C, Nebeker C, Bietz M, et al. Reimagining Human Research Protections for 21st Century Science.J Med Internet Res. 2016;18(12):e329. doi:10.2196/jmir.6634
- Nebeker C, Bartlett Ellis RJ, Torous J. Development of a decision-making checklist tool to support technology selection in digital health research.Transl Behav Med. 2020;10(4). doi:10.1093/tbm/ibz07
About the Presenter: Camille Nebeker is a research ethicist and Associate Professor in the Herbert Wertheim School of Public Health at UC San Diego. Her research and teaching focus on two intersecting area: 1- community research capacity building (e.g., citizen science and community engaged research) and, 2- digital health research ethics (e.g., consent, access, privacy expectations, data management). She directs the UC San Diego Research Center for Optimal Digital Ethics (ReCODE Health) and is affiliated with the UCSD Design Lab and Center for Wireless and Population Health Systems. She leads the Building Research Integrity and Capacity BRIC programs and the Connected and Open Research Ethics CORE initiative. Dr. Nebeker’s research has received continuous support from government, foundation and industry sources since 2002.