Searching Eyes: Privacy, the State, and Disease Surveillance in America

As surveillance was extended beyond infectious disease to chronic conditions, a host of social and political changes would the stage for a new era of conflicts over public health surveillance. Yet they would play out in unpredictable and surprising ways in the battles over cancer surveillance. For decades, collecting complete and meaningful information about cancer had presented an enormous challenge to public health departments. It was a far more complicated undertaking than counting cases of infectious disease. As a consequence cancer surveillance lagged far behind that of infectious diseases—as late as the 1970s, cancer was a reportable condition in fewer than half the states. But all that would change as empowered citizen groups mobilized in support of increased cancer surveillance. Even as they asserted a right to privacy, they also asserted a right to know and a right to be counted.