Perceived risks and benefits of enrolling people with HIV at the end of life in cure research in Southern California, United States

Dubé, Karine; Shelton, Brittany; Patel, Hursch; Ndukwe, Samuel O.; Concha-Garcia, Susanna; Dullano, Cheryl; Solso, Stephanie; Hendrickx, Steven; Kaytes, Andy; Taylor, Jeff; Villa, Thomas J.; Little, Susan J.; Riggs, Patricia K.; Lessard, David; Arora, Anish K.; Costiniuk, Cecilia T.; Eskaf, Shadi; Smith, Davey M.; Gianella, Sara

doi:10.1016/j.jve.2023.100328

Cited by 1 publication

(1 citation statement)

References 42 publications

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“…23 Evidence in other settings suggests that PSIs related to participation in HIV prevention research are prevalent, whereas NSIs _medRxiv_SocialImpactsOfHIVResearchParticipation are uncommon. [24][25][26][27] Still, scientific literature on the assessment of NSIs and PSIs of HIV prevention research participation among SGE individuals, particularly those in high stigma contexts, is sparse. We sought to expand on this work by examining the overall incidence and correlates of NSIs and PSIs related to HIV prevention research participation among a sample of MSM and TSM in Kazakhstan.…”

Section: Introductionmentioning

confidence: 99%

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

Vinogradov,

Lee,

Zhakupova

et al. 2024

Preprint

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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 (mean=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 (mean=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.

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