Public Health Research
Privacy and the “Right to Know”
To achieve collective benefits, public health authorities systematically collect, store, use, and disseminate vast amounts of personal information, commonly in electronic form. Public health authorities monitor health status to identify health problems; diagnose and investigate health hazards; conduct research to understand health problems and find innovative solutions; and disseminate information to inform, educate, and empower people in matters related to their health. These data provide the basic infrastructure necessary to effect many of the common goods of community health. These data are also often personally identifiable and sensitive. Data may reveal a person's lifestyle (e.g., sexual orientation), health status (e.g., mental illness, breast cancer, HIV), behaviors (e.g., unsafe sex or needle sharing), and familial health (e.g., genetics).
Society faces a hard choice between the collective benefits produced by public health data collection and individual interests in privacy. This chapter first explores this tension. The opening section describes the public health information infrastructure and the reasons many experts believe it is crumbling. Next, the chapter examines legal and ethical aspects of particular public health practices: reporting of injuries and diseases to state health departments, research on populations, and partner notification programs. Finally, the chapter presents a model public health privacy statute that seeks to reconcile the collective benefits of surveillance with individual interests in privacy.