Perceived Ethical Risks of HIV Phylogenetic Research: Insights from Professional Stakeholders in Uganda

Abstract

HIV phylogenetics is a powerful tool for elucidating HIV transmission dynamics, but ethical concerns have been raised about its use. We conducted a cross-sectional online survey among HIV professional stakeholders in Uganda to explore their knowledge of HIV phylogenetics and associated ethical considerations. Thirty-two participants completed the survey. 87% correctly defined HIV phylogenetics, but some were unable to recognize potential individual harms associated with HIV phylogenetic research (HPR). The most common individual and societal harms of HPR recognized were identification as an HIV transmission source 25 (78%; 95% CI, 61–89%) and marginalization of certain groups 27 (84%; 95% CI, 68–93%), respectively. Most strongly agreed that obtaining community assent 17 (53%; 95% CI, 36–69%) and specific informed consent for viral sequences used in HPR 20 (63%; 95% CI, 45–77%) were critical. Risks associated with HPR appear to be incompletely understood, underscoring the need to raise awareness of them among various professional stakeholders.