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.
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- The DCCPS Team.
