Stefan Baral

This session addressed phylogenetic HIV surveillance and paved a path forward for communities, researchers, and governments to support a balance between ethical and empirical engagement. This session promoted community education, policies, literature, and social media to engage in ethical and human rights-based approaches for HIV. Session summary by Kalai Willis.

Naina Khanna (Positive Women's Network) detailed activists’ concerns regarding the molecular HIV surveillance initiation launched by the HHS in America, including lack of informed consent, HIV criminalization, lack of community involvement, engagement, and/or consultation, etc. Khanna encouraged collaboration and strengthening of legislation. Farirai Mutenherwa (Biomedical Research and Training Institute/ University of kwaZulu-Natal) presented findings from a qualitative exploratory study with aims to explore critical ethical issues and application of HIV phylogenetics in understanding HIV transmission dynamics. This study assessed risk of harm, informed consent, privacy, confidentiality and data security, and mistrust; findings included the need for developing a balanced model of good ethical practices that places priority on protection of individuals and optimization of scientific value. In application of these two tenets, Diana Tordoff (University of Washington) reviewed a study motivated by assortativity that was ultimately not published after the following considerations: public health utility, beneficence and nonmaleficence, and justice. This research identified the importance in advocating for structural interventions, promoting autonomy and transparency, and bridging understanding between all key stakeholders. The theme of transparency was continued by Allan Maleche (KELIN), who indicated that a lack of trust and fear of breach of confidentiality inhibits engagement in HIV research.

Edwin Bernard (HIV Justice Network) remarked a quotation by Stephen Hawking, “Our future is a race between the growing power of technology and the wisdom by which we use it.” As I reflect on the recurring message, “nothing about us without us,” it was made ever clear in this session that the viability of research rests on the heartbeat of the community… a community that is fully informed with consent, placed as a priority across all aspects of research, and protected against stigma and discrimination. Respecting differences in context across geography, key populations and marginalized communities is an imperative consideration.