Advocacy for TGI Research Participants

Advocacy for TGI Research Participants

January 27th, 2021

Dear Trans, Gender Non-Conforming and Intersex (TGI) Community Members,

In early December 2020, researchers at UCLA Semel Institute for Neuroscience and Human Behavior reached out to TGI people across Southern California who are active in the community, work in advocacy, or work for organizations that provide care, resources, or safety for folks who are transgender and nonbinary. According to their email, the purpose of this meeting was to request feedback on a brain imaging study including set up, appropriate and inclusive materials, and ways in which the study team can respectfully connect with community organizers and partners. During the meeting, we learned that this study is already underway with approval by the UCLA Internal Review Board (“IRB”) (#11-000459).

We strongly recommend that transgender community members and LGBTQ organizations do not advertise or participate in this study. We have grave concerns about the unethical research design.

The research design purposefully causes mental health distress in order to trigger “dysphoria.” This includes having participants wear tight leotards and taking photographs of their body. We were asked for input about low retention of trans participants and found the researchers unable to comprehend why this study is harmful. The researchers are falsely advertising this study without clarity about the expectations of participants and without consideration of the need for direct access to mental health after care.

We object to the purpose of the study and it’s potential consequences on access to care for transgender people. The researchers claim that their study could help transgender people, but their own research materials suggests they are developing tools that may curtail access to gender-affirming treatment. Further, Principal Investigator, Dr. Jamie Feusner, is also currently funded to study Body Dysmorphic Disorder (BDD) and anorexia nervosa. He describes his broader research as seeking to understand phenotypes of aberrant perceptual and emotional processing that cross diagnostic boundaries of conditions involving body image such as BDD, eating disorders, and gender dysphoria. We object to the view that transgender people have an aberrant body image condition or that brain imaging of traumatic response could ultimately “help” trans people. It is suggestive of a search for medical “cure,” which can open the door for more gatekeeping and restrictive policies and practices in relation to access to gender-affirming care. At a time in which trans lives are under attack, we find this kind  of research to be misguided and dangerous.

Gender Justice LA and the California LGBTQ Health and Human Services Network demand the immediate suspension of recruitment and research for a UCLA brain imaging study until further review by the Institutional Review Board (IRB), due to its unethical research design for Transgender, Gender Non-Conforming, and Intersex (TGI) participants who have induced episodes of gender dysphoria and mental health distress after participating in the study.

Furthermore, we call on UCLA to:

  • Immediately cease the recruitment of participants and the use of the misleading title “The UCLA Transgender Research Program.”
  • Call on the Vice Chancellor for Research, Dr. Roger Wakimoto, to appoint an ad hoc committee to investigate the community expressed concerns pursuant to Policy and Guidance: Complaints, Concerns and Suggestions, and Reports of Undue Influence Regarding the Conduct of Human Participants Research. The ad-hoc committee should include representation of transgender people. The findings and outcomes of the investigation should be made available to the public.
  • Conduct a thorough assessment of the Institutional Review Board (IRB) focused on aligning IRB decision-making with UCLA’s commitments to equity, diversity, and inclusion.
  • Create clear research guidelines that include the participation of transgender researchers and policy advocates on scientific advisory boards and community advisory boards for any trans related research.

As members of the TGI community, we realize that we are in need of research to fill the gaps in our access to care. However, we must remain vigilant that any research that is conducted does not impact our community negatively in terms of opening the door for potential policies that excludes us from society.

To sign on to this letter and stand with the transgender community in solidarity, please fill out the google form and submit your organizations’ logo. 

Thank you for standing in solidarity with the transgender community. 

To sign-on as an LGBTQ/TGI community organization, complete this google form.

To read and sign-on as a UCLA researcher/member of the scientific community, view the letter and complete this google form.

Thank you to those who have already signed on to this letter!

Learn more about Gender Justice LA

To review the public complaint sent to UCLA, click here.

To view the letter sent to Dr. Roger Wakimoto, UCLA Vice Chancellor of research, click here.

To sign-on as an LGBTQ/TGI community organization, complete this google form.
To read and sign-on as a UCLA researcher/member of the scientific community, view the letter and complete this google form.