Surveillance, social risk, and symbolism: framing the analysis for research and policy

Abstract

Name-based surveillance for HIV, considered alone, is a useful public health measure; its benefits outweigh its direct costs. There is little evidence that name-based surveillance directly deters individuals at risk of HIV from being tested, or exposes them to significant social risks. Yet such surveillance is chronically controversial. Understood in a broader context of the social risks and symbolic politics of HIV, as subjectively experienced by people at risk, this opposition is both rational and instructive. Although often discussed, the social risks of HIV infection are poorly understood. To the extent these risks have been addressed by privacy and antidiscrimination laws, the solution has been less complete than many public health professionals appear to believe: developments in law and policy, including the increasing prevalence of criminal HIV transmission laws and proposed changes in HIV testing and counseling standards, are contextual factors that help explain the opposition to name-based surveillance. Rather than focusing piecemeal on specific "barriers" to testing and care, an appreciation of the surveillance debate in context suggests a positive undertaking in public health policy to provide the conditions of opportunity, information, motivation and confidence that people with HIV need to accept an effective program of early intervention.