HIV Data and Public Health Ethics

Abstract Uses of clinical data about people living with HIV (PLHIV) in US public health programs have expanded during the 2010–2020s. The digitization of the healthcare system and recognition that PLHIV who are virally suppressed cannot transmit have contributed to policy mandates for health departments to use routinely collected clinical HIV data to identify PLHIV who have fallen out of care—or who may be in transmission networks—and then (re-)link them to care. The ethics of these programs have been a source of controversy among bioethics scholars, social scientists, PLHIV networks, civil society actors, and others. Debates have focused on privacy and confidentiality, criminalization, community and stakeholder engagement, consent, and programs’ evidence base. The fundamental ethical question is: if clinical HIV data are collected for the benefit of individual patients, does the fact that those data can potentially benefit population health mean that they ought to be used for public health action? In our view, programs that utilize routinely collected clinical HIV data for public health purposes have inadequately accounted for ethical dilemmas raised by infrastructural transformations, biomedical advances, and policy shifts. We propose engaging stakeholders in an ethical reset to shape future developments regarding HIV data and public health.