Journal of Medical Law and Ethics (JMLE)

The Right to Know, The Right to be Counted, The Right to Resist: Cancer, AIDS, and the Politics of Privacy and Surveillance in Post-War America

Amy L. Fairchild

The practice of public health begins with surveillance, the identification of individuals with disease. But while not all efforts to monitor morbidity and mortality entail formal notification of individual cases, the name-based reporting of individuals always involves a breach of privacy. The pitched battles over surveillance that marked the first two decades of the AIDS epidemic and, indeed, more recent global debates over the reach of the surveillance state in the name of national security might suggest a kind of timeless, furious battle on the part of those who would be subject to surveillance to defend a ‘right to be left alone.’ But just as often, indeed, perhaps more often, citizens have claimed a right to be counted, demanding surveillance in the face of unknown health threats. In either case, however, in the United States, regardless of whether communities pushed for or against disease reporting, marked citizen engagement has shaped the politics of surveillance since the 1970s. To be sure, privacy was always at stake. But so, too, were what activists conceived of as the right to be counted and the right to know.

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