ArticleJournal of the International AIDS Society2021
The wisdom of mistrust: qualitative insights from transgender women who participated in PrEP research in Lima, Peru.
Article in Journal of the International AIDS Society, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed, 20 citations in OpenAlex.
- Trial
- Sexual Behaviour, HIV Prevention and Testing Among Transgender and Non-binary People in a Cross-Sectional Behavioural Surveillance Survey in Aotearoa New Zealand.AIDS and behavior · 2026Article
- Review
- Factors Associated with Medical Mistrust Among Sexual and Gender Minority Young Adults.Sexuality research & social policy : journal of NSRC : SR & SP · 2026Article
- "If I am here, it is because the system failed": a critical qualitative study of global commercial clinical trials for advanced cancer in Chile.Globalization and health · 2025Article
- Gender-responsive HIV prevention and care research with transgender communities: lessons learned from Peru.Lancet regional health. Americas · 2025Review
- Social, economic, and physical side effects impact PrEP uptake and persistence among transgender women in Peru.BMC public health · 2024Article
- Gender Affirming Hormones Do Not Affect the Exposure and Efficacy of F/TDF or F/TAF for HIV Preexposure Prophylaxis: A Subgroup Analysis from the DISCOVER Trial.Transgender health · 2024Article
- Intersectional stigma and the arc of intranational migration: experiences of transgender adolescents and women who migrate within Peru.BMC public health · 2023Article
- Factors associated with long-term HIV pre-exposure prophylaxis engagement and adherence among transgender women in Brazil, Mexico and Peru: results from the ImPrEP study.Journal of the International AIDS Society · 2022Article
- The wisdom of mistrust: qualitative insights from transgender women who participated in PrEP research in Lima, Peru.Journal of the International AIDS Society · 2021Article
- Social Networks Play a Complex Role in HIV Prevention Knowledge, Attitudes, Practices, and the Uptake of PrEP Through Transgender Women Communities Centered Around Three "Casas Trans" in Lima, Peru: A Qualitative Study.Journal of the International Association of Providers of AIDS CareArticle
Corrections and comments
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Authors and funding
10 authors at 8 institutions in 3 countries.
Funding
Abstract
introductionAlthough 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).
methodsData 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).
resultsThree 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.
conclusionsFindings 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.
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