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Few Transgender Women Participate in HIV Research: Reflections From the Field

July 11, 2014

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Pedro Goicochea, M.Sc., M.A.

Pedro Goicochea, M.Sc., M.A., is a consultant on communications and HIV prevention. For the past 14 years, he has conducted HIV prevention clinical research in men who have sex with men and transgender women in his home country, Peru, and in the U.S.

Male-to-female transgender women (TGW) are the most affected by the HIV/AIDS epidemic. However, little data have been generated on the efficacy of new HIV prevention technologies in this community, and concerns have been raised regarding the participation of TGW in HIV prevention research. I want to share some reflections, based on my experience planning and organizing community education, recruitment and retention of men who have sex with men (MSM) and TGW in HIV/AIDS research in Peru, Ecuador and the U.S. for the past 14 years. I will also try to provide an explanation of why TGW do not participate in HIV prevention research, and recommendations to improve participation.


Definitions and Terminology

There has been a lot of theorizing about sexuality, gender and sexual orientation in the past several decades. However, these discussions have not necessarily been incorporated into the training curriculum of health care providers.

The term transgender was defined in 2007 to describe a range of individuals who have a different sex, gender identity, and/or gender expression than the one assigned to them at birth. Research done before that time had several categories to collect sexual behavior data. In Peru, we used these categories before 2011:

  • Sex: male/female
  • Gender: man/woman
  • Sexual orientation: homosexual/bisexual/heterosexual
  • Sexual identity: gay/ hustler/sex worker/transvestite (cross dresser)
  • Sexual role: active/passive/versatile

Thus, most of the data reported on TGW have been described under the transvestite category.

Recommendation

Health care providers should be trained in sex, sexuality and gender issues. Data collection instruments should incorporate sexual orientation and gender identity, as recommended elsewhere.

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Size of the TGW Population

Observational studies and clinical trials describe factors affecting the vulnerability of TGW's health, but sample sizes of TGW are not large enough to provide statistically significant conclusions.

Participation of TGW in HIV/AIDS research in Peru has roughly reached 15% in sentinel surveillance, observational cohort studies and HIV prevention trials. Other studies report modest enrollment of TGW or do not report the proportion of TGW participants at all. TGW were not considered at the time of estimating the sample calculations to allocate a representative sample to arrive at definitive conclusions.

Recommendation

Researchers should consider TGW in the calculation of the study sample size to arrive at statistically significant conclusions about TGW participants in the studies.

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