A patient consents to HIV genotyping because their physician needs the information to select treatment. The patient is never meaningfully informed that the viral sequence will also enter a government surveillance system. Their sequence is subsequently identified as part of a rapidly growing molecular cluster. Public-health officials then use that classification to decide where and how to intervene. The individual never consented to having their clinical specimen repurposed to map their relationship to a population-level transmission network. This creates a provocative comparison with conventional research ethics. If I recruited 5,000 people living with HIV into a university study, collected their viral sequences, linked those sequences to demographic and epidemiological information, constructed molecular clusters, and evaluated interventions based on those clusters, an IRB would scrutinize questions of consent, risk, privacy, data governance, and protection of participants. Yet when so...
Writings in Anthropology & Public Health