By Stephanie Anderson, Chief of Staff
Representation in clinical trials is crucial for equitable healthcare. Yet, the nature of clinical trial sites, which have historically been based in municipal centers where patient populations are highest, automatically excludes huge swathes of the population, such as those living in rural areas. These sites are also rarely positioned in locations close to affordable housing, meaning low socioeconomic groups can struggle to access trials.
Beyond logistical challenges, issues of psychological safety also serve as a barrier to inclusion. This is particularly true of the LGBTQ+ community, who routinely report negative experiences in healthcare settings more generally and are twice as likely as cisgender and straight peers to skip health screenings because of bad experiences.
This trend towards eschewing medical settings could put this group at risk of becoming underrepresented in clinical trials as well––a problem given that it constitutes a growing proportion of the US population. Globally, 9% of adults identify as LGBTQ+, rising to nearly one in five among Gen Z adults. Including such a large community in drug development is essential if we want genuinely representative drug development and a better understanding of the impact of new treatments on the population as a whole.
The role of clinical trials
While there are inclusivity problems within healthcare, our research suggests that clinical trials may not be as inherently unfriendly to the LGBTQ+ community as general practice.
“My partner and I both participate, and we’ve never felt discriminated against.” Ellen, a long-time clinical trials participant, said on a LGBTQ+ roundtable conducted by Velocity Clinical Research in 2024. Joseph agreed with her, “None of the forms ask who I’m having sex with; it’s not relevant.”
Estelle postulates that high numbers of LGBTQ+ participants are actually present in clinical trials. She theorizes that some marginalized groups feel obligated to ensure there is equity in clinical trials. “The distrust of the system has emboldened them to do the clinical trials… I see a little bit of that from the trans community at large,” she explains. “Doing it for the greater good feels like an obligation for me and for many people.”
There is little data on LGBTQ+ participation in clinical trials. Few studies report including transgender or non-binary participants, making it difficult to gauge their involvement. A 2012 study found participation by LGB individuals was higher than heterosexual participants, but there is insufficient data to see if this is a recurring theme.
This might explain why the LGBTQ+ experience in clinical trials doesn’t appear to differ much from everyone else, at least based on the feedback from our panel. Ruben, who has completed 15 studies in the last five years, said, “I had a great experience in the location that I’m in here in Ohio. The staff have been very supportive.”
The power dynamics in clinical trials––where participants are recruited rather than seeking help––could theoretically make these settings more welcoming. The lack of data collection around LGBTQ+ status in trials may also contribute to a sense of comfort, since sexual orientation and gender identity are essentially irrelevant for all but the trans community, who are more likely to be taking medications that could exclude them from participation.
Barriers to care
For anyone who has faced stigma or discrimination in the past, even minor missteps by medical providers can trigger traumas and lead them to avoid medical care altogether. One in ten LGBTQ+ individuals have experienced medical discrimination, and 29% of queer individuals have felt dismissed or not taken seriously by their doctors.
Access is another fundamental barrier for this community, with higher rates of uninsurance; 10% of LGBT adults in the U.S. are uninsured, compared to 7% of cisgender and straight adults.
The net result is that healthcare providers typically see LGBTQ+ patients less frequently than other groups. This contributes to a lack of knowledge specific to the community and creates yet another barrier to care––providers who can’t adequately address LGBTQ+, which in turn can contribute to feelings of isolation and otherness.
If the panel is right in their estimation that LGBTQ+ enroll in higher numbers in clinical trials––or at least find the environment more inclusive––then the clinical trial arena may be uniquely positioned to address some of the barriers to healthcare faced by this community.
Clinical trials offer free access to medical care and boast staff that can provide more time to individuals. If LGBTQ+ individuals are enrolling in large numbers (though we lack definitive data), staff may also be more familiar with their issues and better equipped to create an environment of psychological safety.
Making healthcare more inclusive
It would be remiss to assume that clinical trials are uniquely welcoming. Even within our panel, there were examples of negative or uncomfortable experiences and plenty of suggestions for how these can be avoided or improved.
Many LGBTQ+ people report looking for clues that they are welcome when they enter a healthcare facility. That includes how staff greet them, whether non-discrimination policies are visible and ensuring facilities meet basic standards is one way to signal equity.
In a clinical trial setting, Kelsey suggests, “Having a fully filled-in profile, i.e., my data stored somewhere and standard questions filled out for me so staff don’t need to ask potentially triggering questions—like pregnancy risk—would be more inclusive.”
Healthcare for everyone
The conversation on equity in clinical research needs to extend beyond race to wider inclusion of minority groups. Clinical trials need to be able to meet enrollment goals, and ensuring inclusivity and accessibility is a huge component of that, particularly among the LGBTQ+ community, who represent a significant and growing proportion of the population.
While aspects of clinical research appear to encourage inclusion among this group––perhaps above and beyond that experienced in general practice––there are still strides to make to ensure unilateral inclusion. Without this, we can’t make strides toward a healthcare system that truly serves everyone.
