Community Insights in Phylogenetic HIV Research: The CIPHR Project Protocol

Abstract

Inferring HIV transmission networks from HIV sequences is gaining popularity in the field of HIV molecular epidemiology. However, HIV sequences are often analyzed at distance from those affected by HIV epidemics, namely without the involvement of communities most affected by HIV. These remote analyses often mean that knowledge is generated in absence of lived experiences and socio-economic realities that could inform the ethical application of network-derived information in ‘real world’ programmes. Procedures to engage communities are noticeably absent from the HIV molecular epidemiology literature. Here we present our team’s protocol for engaging community activists living in Nairobi, Kenya in a knowledge exchange process – The CIPHR Project (Community Insights in Phylogenetic HIV Research). Drawing upon a community-based participatory approach, our team will (1) explore the possibilities and limitations of HIV molecular epidemiology for key population programmes, (2) pilot a community-based HIV molecular study, and (3) co-develop policy guidelines on conducting ethically safe HIV molecular epidemiology. Critical dialogue with activist communities will offer insight into the potential uses and abuses of using such information to sharpen HIV prevention programmes. The outcome of this process holds importance to the development of policy frameworks that will guide the next generation of the global response.

Keywords

• molecular hiv surveillance
• phylogenetics
• participatory research
• data justice
• behavioural and biological survey