There is an urgent need for methods and tools to support improved risk assessment and general decision making when using pervasive sensor and ubiquitous computing technologies in digital health research. Decision support tools and education are critical to improving ethical decision-making. All stakeholders need to understand the technology, as well as the resulting volume and granularity of personal and identifiable data produced. Having this information will aid in accurately evaluating the probability and magnitude of potential harm to downstream consumers and research participants.
We hope that this research will result in an empirically-informed, stakeholder-centered evaluation tools that facilitate decision-making.
I’m a research ethicist at UC San Diego where I conduct research to examine the ethical and regulatory implications of digital health research. I’m working with Maryam Gholami, PhD and students at UC San Diego to evaluate digital technologies (passive sensors) planned for use in health research. This study is supported by the National Institutes of Drug Abuse (NIDA) through a bioethics supplement awarded to Christina Chambers, PhD, MPH.
We are inviting researchers and IRB members to evaluate two research scenarios that involve passive and pervasive sensor technologies. We are interested in learning what participants think would be concerns from three perspectives:
- research participant
- research team
- IRB member
Participation will take less than 60 minutes. If you agree to participate, you will be randomly assigned to either an experimental or control group for this exercise. Those in the experimental group will receive guidance on how to evaluate the technologies whereas those in the control group will rely on their experience and intuition. All participants will receive a $50.00 gift card for contributing.
This research will be used to advance development of decision support tools to support digital health research. There are no direct benefits aside from knowing that you are contributing to the emerging body of knowledge on ethical digital health research practices. Having stakeholders involved in identifying possible risks and benefits is an important first step to developing best practices to guide digital health research.
If you decide to participate, your identity will be kept confidential. Only members of the research team will have access to responses. We will share our results in peer reviewed papers, at professional conferences and with study participants.
The UCSD IRB has verified this study as exempt from the Common Rule. Your participation in this study is voluntary. If you have any questions, please contact Camille Nebeker at firstname.lastname@example.org.
If you agree to participate, please complete this online form: https://forms.gle/h1HKYo27o3vA4mDX9
Once you have provided your contact information, we will follow up with instructions for your participation.
Camille Nebeker, MS, EdD, is a research ethicist and Associate Professor with the UC San Diego School of Public Health in the Divisions of Behavioral Medicine and Global Health. She directs the Research Center for Optimal Digital Ethics (ReCODE) Health and is core faculty with the Design Lab and an Affiliated Investigator with the UCSD Research Ethics Program.
Maryam Gholami, PhD, is a health promotion and dissemination and implementation science researcher. She is an assistant project scientist at the UC San Diego School of Public Health, she is investigator in the UC San Diego Dissemination and Implementation Science Center. Her area of work includes chronic disease prevention program, community engagement, dissemination and implementation science.