Surveillance: The Ethics of Public Health Reporting

DESCRIPTION (provided by applicant): The project will address the broad question of how shifting understandings of privacy and confidentiality as reflected in constitutional, ethical, and social norms have affected the understanding and acceptability of public health surveillance. Through a study of infectious disease reporting, vaccine registries, cancer registries, occupational health reporting, birth defects registries, and the Model State Public Health Privacy Act, the project will describe: 1) how constitutional, cultural, and political forces shaped the context of surveillance, the extent to which reporting generated controversy, and the way conflict was resolved; 2) how changing norms of research ethics shaped discussions over surveillance; 3) the relationship between federal and state public health authorities in creating surveillance regimes and how competing values and political pressures affected decisions regarding surveillance; 4) the ways in which social class, gender, and race affected surveillance; 5) how those with or at risk for specific diseases responded to the prospect of name-based case surveillance; 6) how physicians who cared for patients with reportable conditions viewed reporting and how their attitudes were shaped by the extent to which the disease was stigmatized and by the social class of their patients; 7) the measures taken by public health officials to safeguard the confidentiality of records and the ways in which those efforts changed over time because of scientific, political, constitutional, and ethical concerns; 8) the relationship between epidemiology and public health surveillance and the relationship between the ethics of epidemiological research and the ethics of surveillance; and 9) how changing technology altered the nature of debates. The goal is not to describe a series of cases, but to provide an understanding of the core ethical challenges posed by surveillance. The project will inform discussion of the ethics of public health surveillance and contribute to the development of public policy sensitive to privacy and confidentiality as well as the demands of research and public health.