Ethics and Governance for Digital Disease Surveillance

Digital epidemiology—the use of data generated outside the public health system for disease surveillance—has been in use for more than a quarter century [see supplementary materials (SM)]. But several countries have taken digital epidemiology to the next level in responding to COVID-19. Focusing on core public health functions of case detection, contact tracing, and isolation and quarantine, we explore ethical concerns raised by digital technologies and new data sources in public health surveillance during epidemics. For example, some have voiced concern that trust and participation in such approaches may be unevenly distributed across society; others have raised privacy concerns. Yet counterbalancing such concerns is the argument that “sometimes it is unethical not to use available data”; some trade-offs may be not only ethically justifiable but ethically obligatory. The question is not whether to use new data sources—such as cellphones, wearables, video surveillance, social media, internet searches and news, and crowd-sourced symptom self-reports—but how.