Title: Research Ethics in the Digital Age
Presenter: Camille Nebeker, Ed.D., M.S., of the University of California-San Diego.
Presented: January 26, 2017
About the webinar Digital and Mobile technologies offer the potential to collect unprecedented amounts of real time data in free living environments. We can now monitor location using wearable sensors or by tapping into the global positioning sensors on a smart phone. Moreover, we can infer human behaviors and predict illness by accessing phone and text message logs and mining social networking sites. These data collection methods introduce new ethical and regulatory challenges for both researchers who are using these techniques and Institutional Review Boards (IRBs) charged with protecting study participants. Areas of concern focus primarily on the informed consent process, bystander rights and data management. The Connected and Open Research Ethics (CORE) initiative, led by an interdisciplinary research team, is engaging stakeholders in the mobile health or “mHealth” ecosystem to design a platform where by the ethical and regulatory challenges of research using pervasive sensing technologies can be identified and discussed.
Results of pilot studies will be presented as will formative research that reveals a demand for dynamic guidance and expertise to evaluate the ethical and regulatory dimensions of research protocols using pervasive sensing strategies. This preliminary and formative research has informed development of the CORE platform designed to assist mHealth stakeholders promote the ethical design and efficient review of research using emerging technologies.
About the presenter Camille Nebeker, Ed.D., M.S. is an educator and research ethicist at UC San Diego in Family Medicine and Public Health and an Affiliated Investigator with the Center for Wireless and Population Health Systems at the Qualcomm Institute. Recently, Dr. Nebeker joined the Scripps Translational Science Institute to assist with the Precision Medicine Initiative’s All of Us Research Program. Since 2002, Nebeker has led several research programs as Principal Investigator with funding provided by the National Institutes of Health, National Science Foundation and the Office of Research Integrity (ORI). Her research focuses mainly on two areas: 1- research ethics educational programs, and; 2- ethics and emerging technologies. Specific to research ethics education, Dr. Nebeker has taught traditional (students, post-docs and junior faculty) as well as non-traditional (community health educators, lay research staff) trainees. One program called BRIC (Building Research Integrity and Capacity) is a research foundations and ethics training course designed for Community Health Workers (e.g., patient navigators, promotores de salud) who implement biomedical research and evidence based practices in the clinic and community. She is presently Principal Investigator of the Connected and Open Research Ethics (CORE) initiative, which is supported by a grant from the Robert Wood Johnson Foundation. The CORE is exploring the ethical dimensions of emerging technologies used to capture personal health data including potential risks (e.g., privacy, confidentiality, bystander rights), risk management strategies (e.g., data security) and informed consent. Her team plans to expand this research to engage other stakeholders (e.g., diverse and vulnerable people/participants, technologists, privacy experts) with a goal of developing evidence-based ethical practices.
- Engaging research participants to inform the ethical conduct of mobile imaging, pervasive sensing, and location tracking research – TBM
- Reimagining Human Research Projections for 21st Century Science – Journal of Medical Internet Research
- HIV Risk on Twitter: The Ethical Dimension of Social Media – Proceedings of the 50th Hawaii International Conference on System Sciences
- An Ethical Framework for Automated, Wearable Cameras in Health Behavior Research – American Journal of Preventive Medicine