SACRAMENTO – Gender Justice LA and the California LGBTQ Health and Human Services Network have demanded the immediate suspension of recruitment and research for a UCLA brain imaging study until further review by the UCLA Institutional Review Board (IRB), alleging 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.
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. After members of the TGI community participated in the focus group to assist in the expansion of this research project, they composed a letter to TGI people in Los Angeles warning them about the dangerous research protocols and goals.
“This research design unapologetically aims to cause mental health distress to trigger ‘dysphoria’ to an already marginalized and vulnerable community,” stated Ezak Perez, Executive Director of Gender Justice LA.
Community organizers claim that such research suggests a search for medical “cure.” Dr. Fuesner, the lead researcher of this study, primarily studies Eating Disorders and Body Dysmorphic Disorder (BDD). These areas of study are different from the experience of transgender people. The researchers claim that their study can help TGI people, but their own research materials and publications suggested that they are developing tools that may curtail access to gender-affirming treatment.
This includes the potential to provide evidence for the creation of therapeutics to treat gender dysphoria as one would treat anorexia, which could have negative consequences on the transgender community in terms of policy and systemic governance, and re-opens the door for advancing the highly disregarded and dangerous practice of conversion therapy.
“This study is a prime example of why it’s important to have participatory research as well as have research review boards that are working directly with TGI led organizations,” said Dannie Ceseña, LGBTQ Program Manager at the CA LGBTQ HHS Network. “There is a significant need for research within the TGI community. However, unethical research practices create distrust among TGI community members and affects their willingness to participate in research. As much as I recognize the need for research to fill the gaps in our access to care, this study will do more harm than good.”
Gender Justice LA and the CA LGBTQ HHS Network and various partnering organizations 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 guideless that include the participation of transgender researchers and policy advocates on scientific advisory boards and community advisory boards for any trans related research.
The community advisory session found that the research team did not consider the mental health consequences for participants in its research design, including providing no direct access to mental health services for participants. There has also been criticism that the advertising for the study was not clear regarding the expectations of participants.
“I find it distressing that a research institution with the reputation of UCLA would approve a study to trigger gender dysphoria episodes without adequate mental health protections for the study participants,” stated one of the research participants, who desires to remain anonymous.
In an effort to improve advocacy for TGI research participants, Gender Justice LA and the California LGBTQ HHS Network invite TGI folks to participate in a community forum “TGI Community Chat: Having Value as Research Participants” on February 6, 2021. Topics that will be covered include:
- What should be considered before participating in a research project
- How to remove oneself from a research project if it has negative impacts on your person
- Why it’s important for researchers to collaborate with TGI-led organizations
- and more!
For more information on advocacy for TGI research participants, please visit this website.
Editor’s note: In response to the publication of this article, Phil Hampton, Director of Communications for the UCLA Health & David Geffen School of Medicine issued the following statement on behalf of UCLA late Wednesday afternoon:
UCLA is dedicated to academic research that humanely serves the public good. We take seriously our responsibility to conduct research in a manner that respects study participants and is sensitive to the broader cultural context in which our work is conducted and received.
Concerns were voiced about a study on gender identity and body perception and, as such, the principal investigator voluntarily paused the NIH-sponsored research. This will allow the principal investigator to receive additional input from the transgender, non-binary and gender-nonconforming communities, understand their concerns more deeply and have a dialogue about the study’s objectives and design.
In consultation with both the community and the university, the principal investigator will consider whether revisions to the research project’s design and execution could help mitigate any potential unintended negative consequences while still meeting the project’s objectives.
The ultimate hope of this study is that it will lead to improved quality of life for those who identify as transgender, non-binary and gender-nonconforming and a better understanding of the effects of hormones on the brain.
UCLA believes partnership with our diverse communities is essential to performing research that is culturally aware, socially responsible, improves quality of life and advances our public service mission.
Ariela Cuellar is Communications Director for the California LGBTQ Health and Human Services Network