Achieving Greater Transparency Regarding Molecular HIV Surveillance: A Proposal to Move Beyond the Status Quo, Lumpkins et al, Open Forum Infectious Diseases (2025)

This journal article from Open Forum Infectious Diseases explores the ethical and practical challenges of using molecular HIV surveillance (MHS) to detect and respond to clusters of rapid HIV transmission. MHS relies on analyzing HIV genetic sequences, often collected through routine antiretroviral resistance testing, to monitor transmission networks and inform public health interventions. While this approach offers significant benefits for targeting prevention efforts, it raises concerns about data privacy, informed consent, and potential stigmatization of vulnerable communities. The authors emphasize the need for greater transparency and community engagement to maintain public trust and ensure ethical implementation of these surveillance systems.

A key component of the article’s analysis stems from SESAME (Study of Stakeholder Attitudes towards HIV Molecular Epidemiology), a project designed to examine ethical, legal, and social issues surrounding HIV molecular data use. Through SESAME, the authors convened a diverse working group—including scientists, public health officials, ethicists, and community advocates—to discuss how and when individuals should be informed about the use of their HIV sequence data. Insights from this group shaped the article’s central argument for a spectrum of disclosure approaches, ranging from minimal notification to full informed consent, as a way to balance public health goals with respect for individual autonomy and community trust.