Background Sexual and gender expansive (SGE) individuals in Kazakhstan are disproportionately affected by HIV yet stigma and discrimination pose ethical and practical challenges for HIV prevention research involving them. Although researchers are tasked with ensuring that risks of research participation are reasonable in relation to its benefits, participation-related risks and benefits—including negative and positive social impacts (NSIs and PSIs respectively) on personal relationships, social status, health, and other aspects of life—among SGE populations have received little attention.

Methods We examined NSIs and PSIs of participation among SGE individuals in a three-city HIV prevention study in Kazakhstan at the clinical trial’s follow-up visits. We analyzed responses from 579 unique SGE participants who completed a total of 2648 follow-up visits over the 36-month study period (2019–2022).

Results Overall, NSIs were rare: 9 (2%) participants reported NSIs during the study; virtually no NSIs (x̅=0.0037, SD=0.03) were reported at each follow-up visit. These few NSIs included ‘trouble with friends, family, or acquaintances’ and ‘other’. By contrast, PSIs were extensive: 515 (89%) participants reported PSIs during the study; almost an average of five PSIs (x̅=4.8, SD=3.4) were reported at each follow-up visit. The most endorsed PSIs were ‘gained knowledge’, ‘improvement in HIV-related issues’, and ‘improvement in life’.

Conclusions Our findings demonstrate the potential for HIV prevention research to be associated with PSIs for SGE individuals experiencing stigmatization and discrimination. Future research should address NSIs, particularly interpersonal challenges among network members, within HIV prevention research to minimize risks and burdens of participation.

Jeremy Sugarman is a member of Merck KGaA Ethics Advisory Panel and Stem Cell Research Oversight Committee; a member of IQVIA's Ethics Advisory Panel; a member of Aspen Neurosciences Clinical Advisory Panel; and a consultant to Merck. None of these activities is related to the material discussed in this manuscript. The other authors have no competing financial or non-financial interest to declare.

NCT02786615

This study was supported by the National Institute on Drug Abuse [grant R01DA040513 (PI: Wu)]. Emily Allen Paine's time was supported by the National Institute of Mental Health [grants K01MH128117 (PI: Paine) and P30MH43520 (PI: Remien)].

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