When Worlds Collide: Health Surveillance, Privacy, and Public Policy

Surveillance serves as the eyes of public health. It has provided the foundation for planning, intervention, and disease prevention and has been critical for epidemiology research into patterns of morbidity and mortality for a wide variety of disease and conditions. Registries have been essential for tracking individuals and their conditions over time. Surveillance has also served to trigger the imposition of public health control measures, such as contact tracing, mandatory treatment, and quarantine. The threat of such intervention and long-term monitoring has provoked alarm and rendered surveillance suspect for those concerned about the unwarranted exercise of state authority in the name of public health. Thus the history of surveillance has been bounded by promise of disease control and a specter of intrusion. In this article we address the tension between the public's need for knowledge as a foundation for rational policy-making and the centrality of norms of privacy for democratic societies.