Is Your Smartwatch Giving Away Your Identity? Balancing Open Science and Privacy in the Digital Health Era

A new paper co-authored by mDOT Center researchers from the University of California San Diego and the University of Memphis highlights a critical challenge in modern biomedical research: how to fulfill the mandate for open science while protecting the privacy of research participants.  While the 2023 National Institutes of Health (NIH) Data Management and Sharing (DMS) Policy requires researchers to share data to promote transparency and discovery, the authors argue that current policies may not fully account for the unique risks associated with high-frequency digital health data.

The paper reveals that raw motion signals from body-worn sensors, such as accelerometers, can function as biometric signatures. For instance, the WristPrint study demonstrated that just one day of raw accelerometry data could be used to re-identify individuals with 96% accuracy, even after traditional identifiers were removed.  Furthermore, related research suggests that as few as ten steps of walking may be enough to uniquely identify a person.

To address these gaps, the authors propose a multi-faceted approach:

• • • Policy Updates: Funding agencies should provide specific guidance for high-frequency biosensor data, including thresholds for data aggregation.
    • Enhanced Protections: Researchers should implement risk-mitigation strategies such as privacy-preserving transformations and use controlled-access repositories.
    • Improved Governance: The use of enforceable data use agreements is essential to prohibit re-identification attempts by downstream users.
    • Education: To support the research community, the authors have developed a self-paced online educational module to help trainees and investigators navigate these ethical and regulatory challenges.

Principles into Practice To help turn these ideas into action, mDOT Center researchers have contributed to the WristPrint digital toolbox.  This resource includes a self-paced online learning module designed to help researchers and those who oversee study safety understand how to balance the need for open science with the absolute necessity of protecting participants’ privacy.  By providing practical examples and guidance on how to share data more safely, this toolbox ensures that the next generation of health discoveries can move forward without putting personal identity at risk.

The goal is not to retreat from data sharing, but to “share more wisely,” ensuring that scientific progress continues without compromising participant trust.  By updating how we handle this high-tech data, we can maintain the trust of the public while still making the scientific progress we all rely on.