Sophisticated sensor technologies have become increasingly prevalent in people’s everyday lives, and can now respond to voice commands, detect sleep patterns, and track physical activity. These smart sensors have immense potential to improve individuals’ health and wellness, as photographic images, videos, sounds, vibrations, and light all become data for detecting human behavior.
Due to their rapid dissemination and availability, researchers increasingly study these technologies for various behavior-change interventions without having had a chance to fully understand unanticipated risks around sensitive human subject data. Researchers who develop these technologies and study them are experts in the technology, but not necessarily in ethical issues around peoples’ use of these technologies. Researchers may collaborate with bioethics experts or medical professionals who bring ethical sensitivity to these issues, but these measures are voluntary for the principal investigator (PI) and ethical concerns may arise or be overlooked, even with close collaboration with the IRB. The best approach is to educate every PI about the risks to human subjects, and ensure measures are in place to protect their rights and privacy.
Our team—which consists of a privacy expert, a technology design expert, and advisors from an institutional IRB—is developing a research ethics educational tool for researchers studying sensor technologies in health contexts. To do so, we are interviewing IRB administrators who have experience working with researchers developing or evaluating sensor technologies in these contexts.
We are interested in understanding how these sensor data should be collected from human subjects and managed in ways that would maximize confidentiality and prevent unanticipated risks.
Please contact Jina Huh-Yoo at firstname.lastname@example.org if you are interested in participating in an interview for this research, or if you have any questions. The interview will take place over the phone and last up to one hour. There will be no compensation for the interview.
Jina Huh-Yoo, PhD is Assistant Professor in the Department of Media and Information at Michigan State University (MSU). She has interdisciplinary background in health informatics, information and library sciences, human-computer interaction, and art and design. She designs, develops, and evaluates technologies that help improve individuals’ health and wellness. Dr. Emilee Rader, an information privacy expert, is a co-investigator of this project.
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Hi, I’m curious about the following: Are there any cases or circumstance circumstances that you know of where sensors designed to be implemented inside the human body (whole body network with nano devices for example) are evaluated without patient consent?