Digital technologies, including apps, wearable sensors and social network platforms, offer unprecedented opportunities for health research and clinical care. However, this rapidly evolving landscape is outpacing regulatory structures for protecting research participants. Given the plethora of digital health tools and strategies, researchers are often challenged with deciding which tool is appropriate for their particular study. The presenter and colleagues with the Research Center for Optimal Digital Ethics (ReCODE Health) have developed support tools to aid researchers in ethical decision making. The Digital Health Checklist and Framework is now used by researchers to evaluate risks/benefits, access, usability, privacy and data management protocols. This presentation 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.
Presenter: Camille Nebeker, EdD, University of California, San Diego