We are People, Not Clusters!, Edwin J. Bernard et al., American Journal of Bioethics (2020)

Research and Journal Articles

This editorial outlines concerns with molecular surveillance of HIV and connects them with the ongoing fight, originating decades ago, demanding that people living with HIV are no longer treated as threats to the public. Building on issues raised by scholars about non-consensual molecular surveillance from a bioethical perspective, the authors here argue against the practice, saying it reduces people to “troves of data.”

Through molecular surveillance, public health authorities can currently identify HIV transmission clusters. The technology is expected to eventually develop to the point that directionality, i.e. who transmitted HIV to whom, can be determined. Therefore, concerns with the government collecting this data are justified, especially when the law continues to criminalize transmitting (or merely exposing others to) HIV. Also, as the article notes, the objectification of people living with HIV through this type of monitoring mirrors the way that all people living with HIV are treated as “potential perpetrators” by HIV-related criminal laws.

The article stresses that cluster data is not being collected in a vacuum, unaffected by the stigmatization and criminalization of HIV or the history of racism and classism in public health practices. It also contextualizes discussions about molecular surveillance with new concerns about the surveillance of, and criminalization of, COVID-19. This context provides a fitting opportunity to examine who stands to benefit from molecular surveillance.