July 11, 2014
Most studies on MSM consider TGW as a variant of the male-male sexual behavior and not as a gender identity. Protocol titles and inclusion criteria mention "men" or "men who have sex with men," which excludes people who might have a different gender identity.
Research protocols should include TGW in the title and as a part of the inclusion criteria. Study procedures should be adapted to the needs of participants who identify as TGW. Investigators should include TGW from the beginning of the trial design process in order to have a better understanding on how to address their requirements and needs.
Accessibility and distance from the research site are barriers to participation in research for some TGW who live far from the research facility. Some TGW work late at night or overnight, making it difficult for them to keep track of their study appointments.
In addition, most TGW are affected by housing problems and are constantly moving, and their phone numbers frequently change due to lost or stolen phones.
Finally, researchers need to prevent participants from becoming lost to follow-up because it would affect the analysis of the data. So enrollment strategies need to consider the potential mobility of participants and exclude those more likely to be hard to follow.
Research sites should be accessible from where TGW live or work and should have special hours of operation for them.
HIV prevalence among TGW is high. HIV prevention trials require HIV-negative participants. Most TGW screen out due to their HIV status.
Participation in clinical research requires application of informed consent, rigorous data collection, blood draws, exams, interviews, reports, etc., that take a long time during the study visits. All of this requires commitments that participants are not willing to make.
Some TGW may feel that they will not benefit from the intervention even if it were successful because they have had experiences of marginalization in health services due to their gender identity, so participating in research will not make a difference.
Researchers should optimize study procedures and reduce the burden on participants' time. They should work with the ethics committee and the community advisory board to write simpler, easier-to-fill-out informed consents. Clinicians and counselors should work with TGW to address self-esteem issues. Finally, researchers should make sure that study participants benefit from the intervention after the trial is over.
These are not the only factors affecting the participation of TGW in research, but are, from my experience, the most relevant ones.
I want to take this opportunity to express my gratitude to Maricielo Peña and Jana Villayzan, trans activists and leaders from Lima, Peru, for their input on the first draft of this text.
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