Ethical considerations and the social context of HIV phylogenetic research in uMkhanyakude district, KwaZulu-Natal, South Africa

Abstract

Background: HIV phylogenetic analyses provide insights into genetic relatedness and transmission patterns but cannot directly identify specific transmission events or the direction of transmission. However, if not well understood and handled carefully, phylogenetic results have the potential to harm individuals and groups.
Objectives: The study aimed to explore the ethical considerations and the social context of HIV phylogenetic research.
Method: A qualitative methods study on phylogenetics was embedded within a clinical trial on community-based biosocial HIV prevention and sexual reproductive health for youth in rural KwaZulu-Natal, South Africa. Data collection was conducted over an 8-week period using in-depth interviews. Data were audio-recorded and translated verbatim and transcribed into English in anonymised format. Data were later analysed thematically. Four themes were identified: perceived benefits of phylogenetics, informed consent, participant privacy and data security and social risks.
Results: Participants acknowledged the benefits of using phylogenetics in HIV research highlighting the importance of identifying transmission pathways in high prevalence settings. However, consideration should be given to community members with informed consent required.
Conclusion: Ethical care is necessary in HIV phylogenetic research. Strong ethical and rights-based frameworks that facilitate prevention strategies while respecting the rights and interests of individuals and minimising any risks are required.