Community key to gender identity research effortSep. 7, 2017, 10:18 AM
One of the key elements of the Vanderbilt Program for LGBTI Health, an innovative effort to improve health care for lesbian, gay, bisexual, transgender and intersex patients, is community engagement.
“That transcends everything we do — from our patient navigator program for transgender patients to our patient advisory groups to the development of a community advisory board to guide our research,” said Jesse Ehrenfeld, M.D., MPH, director of the program for LGBTI Health.
“We recognized at the outset that we have to engage and empower the LGBTI community as we work to better provide services. That’s been foundational and the starting point of all of our efforts.”
Building on this foundation, Lea Davis, Ph.D., assistant professor of Medicine, is reaching out to the Nashville transgender community to gather input as she formulates a grant application to study how genetics influence our gender identity.
“Vanderbilt is a national leader in community-engaged research and we have brought that expertise in to guide our thoughts about this research from the outset,” Davis said. “For this particular study, we’ve conducted multiple community engagement studios with transgender people; we have a community advisory board, and the study hasn’t even started yet.”
Davis’ area of research aims to understand the genetic contribution to gender identity as a spectrum and is inclusive of transgender identities.
“As with any genetic study it’s important that people understand what it means when we say that something has a genetic component,” Davis said. “We don’t want people to fear that we are going to take their DNA and look for something that can be used against them; that’s a common fear people have. It’s incumbent upon us, as scientists, to work with the community and our patients to explain what it is we’re looking for and how advancing our understanding of the genetic complexity can positively impact everyone.”
To allay those fears, the Program for LGBTI Health is taking the time to explain this project to the transgender community through Vanderbilt engagement studios where facilitators receive feedback from members of communities that are represented in the research.
“We recently offered one studio to transgender adults at Nashville Cares and another with transgender teens and youth at Oasis Center. They were both facilitated by colleagues from the Vanderbilt Institute for Clinical and Translational Research (VICTR) who have expertise in community facilitation,” said Davis, who provided a brief presentation on her work and then took questions from attendees.
In keeping with the Program for LGBTI Health’s community engagement mission, those studios enabled community members to share what they felt their role in the research should be, along with their concerns and hopes for these types of studies.
Davis immediately took their feedback and revised her grant application based on it.
“We are committed to making sure the LGBTI community and transgender people are not just represented, but rather embedded in our work. After the last session, I left with a profound sense of how our work can affect people’s lives and the tremendous responsibility that goes along with that.”