Social Impacts of Multi-City HIV Research Participation Among Sexual and Gender Expansive Individuals in Kazakhstan


Vinogradov V. Lee Y.G. Zhakupova G. Mergenova G. Davis A. Paine E.A. Reeder K.G. Laughney C.I. Sung J. Primbetova S. Terlikbayeva A. Sugarman J. Wu E.
July 2025Wolters Kluwer Health

Journal of Acquired Immune Deficiency Syndromes (1999)
2025#99Issue 3239 - 247 pp.

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, participant-reported risks and benefits of research participation - including negative (NSIs) and positive social impacts (PSIs) on personal relationships, social status, health, and other life domains - among SGE populations have received little attention.Methods:We examined NSIs and PSIs of research participation among SGE individuals in a 3-city HIV prevention study in Kazakhstan at the trials follow-up visits. We analyzed responses from 579 unique 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; nearly no NSIs (x =0.0037, SD = 0.03) were reported at follow-up visits. 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; an average of almost 5 PSIs (x =4.8, SD = 3.4) were reported at follow-up visits. The most frequently reported PSIs were gained knowledge, improvement in HIV-related issues, and improvement in mental health.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 confidentiality breaches and interpersonal challenges, within HIV prevention research to minimize risks and burdens of participation.Clinicaltrials.gov:NCT02786615.

clinical trials , ethics , HIV , Kazakhstan , men who have sex with men , transgender

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Columbia University Global Health Research Center of Central Asia, Almaty, Kazakhstan
Department of Social Work and Social Administration, The University of Hong Kong, Hong Kong
Social Intervention Group, Columbia University School of Social Work, New York, NY, United States
Columbia University and New York State Psychiatric Institute, New York, NY, United States
Berman Institute of Bioethics, Johns Hopkins University, Baltimore, MD, United States

Columbia University Global Health Research Center of Central Asia
Department of Social Work and Social Administration
Social Intervention Group
Columbia University and New York State Psychiatric Institute
Berman Institute of Bioethics

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