Developing and Implementing Measures to Address Ethical Issues in Community-Based Multi-City HIV Prevention Research with Sexual and Gender Diverse Persons in Kazakhstan

Background and Purpose: HIV prevalence among sexual and gender diverse (SGD) persons—including men who have sex with men (MSM)—in Kazakhstan has increased from 1.2% in 2011 to 6.2% in 2019, bucking global trends in overall HIV prevalence. SGD persons in Kazakhstan face high levels of stigma and discrimination, which pose ethical and practical challenges for research needed to develop locally effective means of decreasing HIV incidence.

Methods: SGD persons in Almaty, Nur-Sultan, and Shymkent are recruited into a National Institute of Drug Abuse funded trial of an HIV prevention intervention encouraging engagement in the HIV care continuum via social marketing. Ethical issues in this research include privacy, confidentiality, safety, and well-being. To address them, in addition to usual research ethics approvals, prior to enrollment we conducted robust community engagement including site visits to recruitment venues, developed plans for risk mitigation and linkage to care, and prepared to monitor social impacts during the trial. Participants undergo HIV and STI testing and behavioral assessments at baseline and every 6 months, including a Social Impacts Questionnaire. From 24 July 2018 until 15 March 2020 (when study activities were paused due to COVID-19), the study enrolled 627 individuals, who completed a total of 531 follow-up assessments.

Results: Privacy concerns focused on the possibility of participants' being "out" or "outed" about their sexuality and/or HIV status. Prior to attending a group-based intervention, an individual "orientation" session was conducted where issues of disclosure and maintaining privacy/confidentiality are addressed. Additionally, study procedures detail how to respond and assist if confidentiality is breached and/or a participant experiences discrimination, stigma, and/or violence. Extensive training and supervision of research staff facilitated linkage to clinical care for participants testing positive for HIV/STIs. Protocols evolved based on responses to regular surveys that specifically queried how to improve privacy, safety, and confidentiality. Reports of positive social impacts at follow-up assessments far outnumbered negative impacts: n=376 (70.8%) vs. n=3 (0.6%), respectively. Among the most frequently reported positive impacts included: "gained knowledge" (n=355, 66.9%), "improvement in issues related to HIV" (n=343, 64.6%), and "improved mental health" (n=291, 54.8%).

Conclusions and Implications: With appropriate planning, HIV prevention research can be ethically conducted in locations where diverse sexual and gender characteristics are stigmatized with few negative social impacts and many positive social impacts. This study provides a blueprint to enhance HIV-related research in other settings where the target population experiences stigma and discrimination.