The Limits of Privacy: Surveillance and the Control of Disease

Abstract

What justified the Center for Disease Control's1999 determination to require HIV casereporting? Why were names necessary? Why didopponents view the reporting of names with suchalarm? This paper retells the history of theencounters over HIV reporting that had occurredsince the mid 1980s. In placing HIV reportingwithin a larger context, however, we understandthe clash between privacy and public healthnecessity as a complex issue, both inhistorical and contemporary practice. Byunderscoring the similarities and differenceswith the histories of surveillance for otherinfectious diseases, vaccination, occupationaldiseases, cancer, and birth defects, and HIVreporting internationally, we can betterunderstand the implications of the HIV debatefor an ethics of surveillance more generally.