Understanding how people move and interact with each other—locally and globally—is crucial for predicting and preventing the spread of a virus. But gathering this information raises important ethical questions as well. Inspired by this dichotomy, the workshop “Privacy and Ethics in Pandemic Data Collection and Processing” was held last week at the Brown University School of Public Health. It brought together thought leaders to explore the balance between harnessing technology to collect valuable health data, and protecting people’s privacy.

Julia Netter, visiting assistant professor of philosophy at Brown University, is a political philosopher interested in the ethics of digital technology. Credit: Kenneth Zirkel

Sponsored by Brown’s center for Mobility Analysis for Pandemic Prevention Strategies (MAPPS), the Office of the Vice President for Research (OVPR) and the Institute for Computational and Experimental Research in Mathematics (ICERM), the workshop convened 37 experts from a wide range of fields including technology, ethics, political philosophy, and epidemiology over a three-day period. 

The event featured keynote presentations, breakout sessions, and small working groups that focused on sharpening our understanding of the ethical and technical issues that arise in the process of collecting and analyzing data. Specifically, the group discussed collecting data on social media networks, investigating ways to keep people’s information private, and thinking through ways to incorporate this data into models that can help predict and explain the spread of disease.

Wilmot James is a South African academic who served as the country’s opposition spokesperson of health and as a Member of Parliament for the opposition Democratic Alliance. Credit: Kenneth Zirkel

“This workshop was a forum in which philosophers, behavioral scientists, mathematicians, and cryptographers could discuss practical and theoretical approaches to privacy in research,” said Mark Lurie, associate professor of epidemiology at the Brown University School of Public Health and co-host of the workshop. “Infectious disease specialists like ourselves are eager to hone techniques that utilize highly detailed personal information for pandemic prevention.” But, he notes, “it’s important we undertake that process with a robust ethical framework and data protection plan in place, and our team is excited to continue fostering interdisciplinary conversations about privacy.” 

Credit: Kenneth Zirkel

Participants discussed the importance of collecting high-resolution data on mobility and human interactions in real-time to effectively respond to and prevent future outbreaks. They highlighted the need for hyperlocal information to improve outbreak responses and emphasized the importance of considering what data should not be collected when tracking individuals during a study. They also stressed the importance of estimating the spread of secondary cases caused by superspreading events.

This critical work will be continued by Lurie and the MAPPS team in the months to come. The workshop, which took place January 17-20, 2023, and was funded by the National Science Foundation (NSF).