Division of Social and Behavioural Health, Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada.
Department of Medicine, Division of Infectious Diseases, Brigham and Women's Hospital, Boston, MA, USA.
J Int AIDS Soc. 2021 Sep;24(9):e25769. doi: 10.1002/jia2.25769.
Although pre-exposure prophylaxis (PrEP) is a remarkable biomedical advance to prevent HIV, ongoing research on PrEP contributes to and interacts with a legacy of HIV experimentation on marginalized communities in resource-limited settings. This paper explores the complexity of PrEP research mistrust among Peruvian transgender (trans) women who completed a PrEP adherence intervention and those who refused participation (i.e. declined to enrol, voluntarily withdrew, and/or were lost to follow-up).
Data were derived from 86 trans women (mean age 29 years) participants in the formative (four focus groups (n = 32), 20 interviews) and the evaluation stages (34 interviews) of a social network-based PrEP intervention for trans women in Lima, Peru. The formative stage took place from May to July 2015, while the evaluative stage took place from April to May 2018. Audio files were transcribed verbatim and analysed via an immersion crystallization approach using Dedoose (v.6.1.18).
Three paradoxes of trans women's participation in PrEP science as a "key" population emerged as amplifying mistrust: (1) increases in PrEP research targeting trans women but limited perceived improvements in HIV outcomes; (2) routine dismissal by research physicians and staff of PrEP-related side effects and the social realities of taking PrEP, resulting in questions about who PrEP research is really for and (3) persistent limitations on PrEP access for trans women despite increasing involvement in clinical trials, fostering feelings of being a "guinea pig" to advance PrEP science.
Findings highlight the wisdom inherent in PrEP mistrust as a reflection of trans women's experiences that underscore the broken bonds of trust between communities, researchers and the research enterprise. PrEP mistrust is amplified through perceived paradoxes that suggest to trans women that they are key experimental participants but not target PrEP users outside of research settings. Findings highlight the urgent need to reframe mistrust not as a characteristic of trans women to be addressed through education and outreach, but as a systemic institutional- and industry-level problem replicated, manifested and ultimately to be corrected, through global HIV science.
尽管暴露前预防（PrEP）是预防 HIV 的一项重大医学进展，但对 PrEP 的持续研究有助于并与资源有限环境下边缘化社区的 HIV 实验传统相互作用。本文探讨了秘鲁跨性别（trans）女性对 PrEP 研究的不信任的复杂性，这些女性完成了 PrEP 依从性干预，而另一些女性则拒绝参与（即拒绝入组、自愿退出和/或失访）。
数据来自秘鲁利马的一项基于社交网络的 PrEP 干预措施中 86 名跨性别女性（平均年龄 29 岁）参与者的形成阶段（四个焦点小组（n=32），20 次访谈）和评估阶段（34 次访谈）。形成阶段于 2015 年 5 月至 7 月进行，而评估阶段于 2018 年 4 月至 5 月进行。音频文件逐字转录，并通过使用 Dedoose（v.6.1.18）的沉浸结晶方法进行分析。
跨性别女性作为“关键”人群参与 PrEP 科学的三个悖论突显了不信任的加剧：（1）针对跨性别女性的 PrEP 研究增加，但 HIV 结果改善有限；（2）研究医生和工作人员对 PrEP 相关副作用和服用 PrEP 的社会现实的常规漠视，导致人们质疑 PrEP 研究真正针对的是谁；（3）尽管越来越多的跨性别女性参与临床试验，但 PrEP 的获得仍然受到限制，这让她们感到自己是推进 PrEP 科学的“试验品”。
研究结果强调了 PrEP 不信任所固有的智慧，这反映了跨性别女性的经验，突显了社区、研究人员和研究企业之间信任纽带的破裂。跨性别女性对 PrEP 的不信任因感知到的悖论而加剧，这些悖论表明，她们是关键的实验参与者，但在研究环境之外，她们不是 PrEP 的目标使用者。研究结果强调了迫切需要重新定义不信任，而不是将其视为跨性别女性的特征，通过教育和外展来解决，而是将其视为一个系统的机构和行业层面的问题，通过全球 HIV 科学来复制、体现和最终纠正。
