Fostering Transgender Inclusion in HIV Research DAIDS Cross-Network Transgender Working Group


By: Dr. Shelly Karuna- HVTN, Seattle, WA, USA, with contributions from the HVTN 505 Protocol Team

Transgender people face stigma and discrimination in all aspects of society--family, schools, workplace, health care settings, housing, the criminal justice system, and more. The cumulative effects of these traumatic experiences often create fear and distrust among transgender people, and this may directly impact their involvement in HIV research. In order to successfully recruit, enroll, and retain transgender individuals into our clinical trials, it is important for research staff to develop some degree of understanding, knowledge and humility. This is necessary across all the NIH-funded HIV/AIDS clinical trials networks and can help ensure that the mistreatment and discrimination that are already part of the transgender experience are not perpetuated in the clinical research setting. To address these issues, the Division of AIDS (DAIDS) established the Cross-Network Transgender Working Group (CNTWG) in 2015. The group’s goals are to foster coordination, collaboration and an exchange of information related to transgender issues across the networks. The Working Group has members representing each of the networks and DAIDS and meets quarterly.

Data collection was the first issue the CNTWG addressed, recognizing that the research networks were not regularly collecting information about study participants’ gender identity in a unified, systematic, and affirming manner. By failing to collect information about gender identity, we do two things: we compromise the validity of the research, and we perpetuate discrimination against people whose gender does not match the sex they were assigned at birth. Simply asking if someone is male or female fails to capture that person’s identity as a transgender or cisgender person. Furthermore, it completely excludes those who don’t fit into one of the binary boxes of man or woman. Transgender people represent an entirely distinct population and experience unique epidemiological circumstances. We now know that transgender people—particularly transgender women of color—are among the populations most vulnerable to HIV worldwide, and the factors driving this are different from those affecting cisgender women and men of all sexual orientations. To miscategorize transgender people is not only disrespectful and discriminatory, it’s just bad science. Without accurate scientific information about transgender people, it’s difficult to fully assess HIV treatment and prevention interventions for transgender communities.


Sample Question
This is an example of the two-step method with the gender options listed alphabetically to avoid the perception that they’re listed in any form of hierarchy. Intersex was also added to the question about sex assigned at birth. While people are not necessarily assigned intersex at birth, and some intersex conditions aren’t identified until later in life, an additional category is available in some states in the U.S. so that people can change their birth certificate to reflect their intersex or non-binary status.

After reviewing data collection forms across the networks and looking at best practices from organizations such as the Center of Excellence for Transgender Health, the CNTWG recommended the standard use of the two-step method, which as the name implies, asks people to describe themselves in two ways: their gender identity and the sex they were assigned at birth. By separating gender identity from sex assigned at birth, study participants can accurately describe who they are, and researchers can correctly categorize transgender participants who might otherwise be missed (for example, a participant who indicates she is a woman but was assigned male at birth). The two-step method also provides multiple choices for responding, including options such as genderqueer, transgender man, transgender woman, man, woman, and gender non-conforming. We also recommend providing space for someone to write-in how they identify, since there are many terms for gender identity, and they are always evolving. As an example, the 2015 U.S. Transgender Survey [i] of nearly 28,000 individuals included a list of gender identity terms; respondents could check all the terms that they used to describe themselves. In addition to the 26 gender identity terms listed, the respondents wrote in more than 500 unique terms with which they identified. No one identifies as “other,” nor should we ask them to.

 

The HIV Vaccine Trials Network (HVTN) was at the forefront regarding data collection, having revised its Demographic Case Report Forms in 2009 to adopt the two-step method. Using the HVTN form as a model, the DAIDS CNTWG developed a template to share with the other networks and recommended its use for all studies. Given the unique needs of each network, not all the case report forms are identical but overall, the two-step method is now a regular part of the data collection process. However, DAIDS and the networks acknowledge that there may be specific reasons not to ask about gender identity. For instance, in some regions of the world, gender identity disclosure could result in harm to the participant due to significant discrimination, stigma, or criminalization. Therefore, exceptions can and should be made for not asking about gender identity, but there should be a clear rationale as to why this is being done. The two-step method helps acknowledge participants for who they are and helps ensure that the information collected is accurate. In the context of HIV research, this allows us to better understand the impact of HIV vaccines, other prevention strategies, and treatment on transgender communities.

The CNTWG also recognized that in order to foster a welcoming and affirming environment for transgender participants, staff needed more educational tools.  While some materials exist, the Working Group felt that they weren’t always applicable to the research setting. The group decided to create a comprehensive transgender training curriculum and identified five of the most important content areas to help build the capacity of all site and network staff. Input and guidance from subject matter experts, including transgender and gender non-conforming people, advocates, researchers, and site staff, were solicited to further identify, design, develop, and review the training content. Their experiences and perspectives were essential to the process and ensured that a variety of key issues were appropriately addressed.  The specific content of each module was then pilot tested during training sessions at the annual network meetings of each of the five DAIDS clinical trials networks. The idea was to test the content to make sure that it was relevant and clear before pursuing the costlier development of web-based training tools, which were needed to reach staff throughout the research enterprise.

“An Introduction to Transgender Communities” and “HIV in Transgender Communities” are both available on the DAIDS Learning Portal.
“An Introduction to Transgender Communities” and “HIV in Transgender Communities” are both available on the DAIDS Learning Portal.

The five modules that were developed as part of the overall Transgender Training Curriculum for HIV Research include: 1) An Introduction to Transgender Communities; 2) HIV in Transgender Communities; 3) Creating a Gender-Affirming HIV Research Environment; 4) Clinical Considerations and HIV Risk Assessments for Transgender Research Participants; and 5) Trauma-Informed Care for Transgender Research Participants.

To date, each module has been presented at one or more of the annual network meetings. Each one was very well received and generated thoughtful discussion. We found that having at least one transgender presenter was extremely valuable, as their personal stories and experiences helped bring the material to life. Attendees of the training represented a cross-section of our networks and sites, including community advisory board members, clinicians, community educators/recruiters, data managers, study coordinators, laboratory and regulatory staff, as well as staff from DAIDS – all of whom are the intended users of the final training tools. While the training modules were developed with a strong U.S. focus, training attendees from outside of the U.S. felt that the content was relevant, valuable, and globally applicable.

The process used to develop the content, which involved ongoing review and input by a transgender-inclusive and diverse group of subject matter experts, was essential to the success of the final training curriculum. Having the input and experience of the subject matter experts helped ensure the accuracy, sensitivity, and cultural responsiveness described in the curriculum itself. The first two modules are already available as web-based training tools, and the remaining modules should be available in the coming months. It is hoped that they will help reduce the misinformation and lack of understanding that perpetuate the misgendering, stigma, mistreatment, and trauma too often experienced by transgender people. Cultivating awareness, knowledge and understanding of transgender communities is a vital step in providing transgender-affirming care and services, and in supporting transgender inclusion in HIV vaccine, prevention, and treatment research.

Sidebar: Transgender Training Curriculum for HIV Research:

Two of the five training modules – An Introduction to Transgender Communities and HIV in Transgender Communities are currently available to the public on the DAIDS Learning Portal at https://daidslearningportal.niaid.nih.gov/.

Anyone affiliated with a site, including community representatives, can get an account by clicking on “request an account” and providing your site number (available from your site) and other relevant information. For people who are not affiliated with a site or network, you can request an account using the link at the bottom of the page (“Contact DAIDS Training Support Team”). Simply note that you are interested in the transgender training modules. In addition to the web-based training tool, you will also have access to the in-person training materials, including a PowerPoint presentation, facilitator’s guide, and any hand-outs such as exercises, answer keys, and a listing of resources and publications.

To access the transgender training modules and related material go to the DAIDS Learning Portal at https://daidslearningportal.niaid.nih.gov/
To access the transgender training modules and related material go to the DAIDS Learning Portal at https://daidslearningportal.niaid.nih.gov/

Sidebar:  Selected Definitions

Sex is typically considered to be our anatomy as female or male. It includes our internal and external sex organs, chromosomes, and hormones.

Sex Assigned at Birth is determined when a health care provider inspects a baby’s genitalia; the infant’s sex is assigned, without the expectation of ambiguity.

Gender is the social construct of being a man, woman, neither, or both, and can vary by culture.

Gender Identity is a person’s internal sense of their gender. It’s how we identify themselves. We may identify as a man, woman, as neither, or as non-binary – which describes any identity that doesn’t fit neatly into the categories of man or woman.

Cisgender describes someone whose gender identity matches the sex they were assigned at birth. This term comes from chemistry, where “cis” means “same.”

Transgender or trans describes a person whose gender identity differs from their sex assigned at birth, and it is defined by the person’s present identity. As an example, a transgender woman is someone who currently identifies as a woman but was assigned male at birth.  In the US, transgender can also be used as an “umbrella” term to encompass the other gender identities. 

Gender Non-Conforming refers to a person whose gender expression is not consistent with the societal or cultural norms expected of that gender. People who are gender non-conforming do not follow other peoples’ ideas or stereotypes about how they should look or act based on the female or male sex they were assigned at birth.

Genderqueer is used to describe people who don’t identify as a man or a woman; they do not subscribe to conventional gender distinctions. It may also be considered a catch-all term for gender identities other than man and woman, thus outside of the gender binary. It can also be a term that separates someone from the heteronormative majority.

Intersex is a term refers to person born with a combination of male and female biological characteristics, such as chromosomes, hormones, or genitals, that make it difficult to assign their sex as distinctly male or female. For example, person might be born with a vagina, appearing to be female on the outside, but having mostly male-typical anatomy on the inside. There are a number of different conditions that can result in someone being intersex. Intersex is distinct from and generally not connected with being transgender, and most intersex people do not identify as transgender.

Cross-dressing generally refers to people who wear clothing typically associated with the sex different from the one they were assigned at birth. Individuals who regularly engage in cross-dressing may have a more fluid sense of their own gender presentation, and do not necessarily feel limited to presenting themselves strictly in accepted binary (male or female) attire.

Transvestite is a dated term used to refer to someone who cross-dresses; it is no longer commonly used in the U.S. and is considered offensive by many people.

The introductory module serves as a foundation for all the other modules. It focuses on defining key gender-related concepts and commonly used terms and incorporates exercises and knowledge checks to help reinforce comprehension and learning.
The introductory module serves as a foundation for all the other modules. It focuses on defining key gender-related concepts and commonly used terms and incorporates exercises and knowledge checks to help reinforce comprehension and learning.

Two Spirit is a modern umbrella term used by some indigenous North Americans to describe certain people in their communities - gay, lesbian, bisexual, and gender-variant individuals. Because the term “Two Spirit” can have different meanings, it is important to ask someone who uses the term to describe what it means to them.

Kathoey is a Thai term historically used to refer to people of a third gender, but it has become dated and no longer considered appropriate to use. A third gender or third sex is a concept in which individuals are categorized, either by themselves or by society, as neither man nor woman. Other Thai terms that are now more commonly used include one that translates to “second type of woman” (sao-pra-pate-song).  There are also more general and less offensive terms to refer to transgender people as a whole (khon-kaam-pate) as well as terms that specifically refer to transgender women (poo-ying-kaam-pate) and transgender men (poo-chai-kaam-pate).

Hijras are people assigned male at birth who have feminine gender identity in cultures in South Asia; they wear women's clothing and have feminine gender roles in society. Hijras can be eunuchs, intersex, or transgender and have a long-recorded, complex history in the Indian subcontinent.

Transexuales and travesti are terms more commonly used across South America. Peru and Brazil use transexuales to broadly refer to transgender people. Travesti is also often used across South America and shouldn’t be confused with the term transvestite. In some South American cultures, a travesti is a person who was assigned male at birth and who now has a feminine gender identity.

In the U.S. and globally, there is a high burden of HIV in transgender communities, particularly among transgender women of color. Stigma and discrimination are key factors driving this.
In the U.S. and globally, there is a high burden of HIV in transgender communities, particularly among transgender women of color. Stigma and discrimination are key factors driving this.

 

 

 

 

 



References

[1]2015 U.S. Transgender Survey, National Center for Transgender Equality. http://www.transequality.org/sites/default/files/docs/usts/USTS%20Full%20Report%20-%20FINAL%201.6.17.pdf