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

Acknowledgments

We would like to thank all of our community partners on this project – Health Options for Young Men on HIV/AIDS and STIs (HOYMAS), Ishtar MSM, G10 Research Network, Key Population Consortium of Kenya, Bar Hostess Empowerment and Support Programme, Sex Worker Outreach Programme (SWOP), SWOP Ambassadors, and Partners for Health Development in Africa (PHDA).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Ethics approval and consent to participate

Ethical approval will be obtained from the Human Research Ethics Board at the University of Manitoba, Canada and AmREF Health Africa, Kenya for the molecular pilot study. Written informed consent will be obtained from all participants for the behavioural and biological sampling component of this study. All experiments will be carried out in accordance with relevant guidelines and regulations. All experimental protocols will be approved by the relevant ethics research boards ahead of implementing our community-based molecular pilot study.

Author’s contributions

LM and RL conceived the study described in this publication. FC, LHT, and LL contributed to writing the initial draft. PM, SG, JM, JW, IK, SO, SW, HA, PM, JA, RK, EJ, PB, JK, PS, AFAM, JBJ, MT, PJM, SS, SM, MLB, and LM reviewed and edited all subsequent versions of the manuscript. FC, LL, PM, JM, PW, PB, SS, MLB, LM, and RL made contributions to the acquisition of financial support leading to this publication. RL provided supervision and critical review of all iterations of the manuscript.

Additional information

Funding

Supported by the New Frontiers in Research Fund Exploration Grant NFRFE-2020-00986. The funders had no role in study design; in the collection, analysis, and interpretation of data; in the writing of the report; and in the decision to submit the manuscript for publication. Robert Lorway is supported by a Tier 2 Canada Research Chair in Global Intervention Politics and Social Transformation. Sharmistha Mishra is supported by a Tier 2 Canada Research Chair in Mathematical Modeling. Souradet Shaw is supported by a Tier 2 Canada Research Chair in Program Science and Global Public Health.