Clinical trial diversity benefits everyone–hear from four people participating in COVID-19 research at UNC Health.
When new medicines or drugs are developed, researchers want to make sure they work and are safe for everyone. This is why it’s important to have people from all ages, races, genders, places and levels of health participate in clinical trials.
Making sure that clinical trials are inclusive benefits everyone, but with legacies of racism and inequality in healthcare, diverse testing has not always been the case.
Historic and ongoing racism affects clinical trial diversity in a few ways. One is access–for example, a trial location may be far away from certain communities, which makes it less likely that they will participate.
Another factor is the legacy of medical experimentation on Black Americans and other communities of color, such as the Tuskegee syphilis study conducted from 1932-1972 in Alabama.
These very dark and very real parts of our history understandably leave many Black Americans wary of participating in clinical trials and medical research, even as diversity is needed to ensure that vaccines and medicines work and are safe for everyone.
The COVID-19 crisis has made this issue even more important. With communities of color contracting and dying from COVID-19 at higher rates than white Americans, getting a safe vaccine to all who need it is especially urgent.
In the clinical trials for the Pfizer vaccine, 9.8 percent of participants were Black and 26.2 percent were Hispanic. In the Moderna trials, 9.7 percent of participants were Black and 20 percent were Hispanic. According to the Kaiser Family Foundation, the vaccine trials are more diverse than usual, but people of color are still underrepresented.
UNC Health has been a part of clinical trials for the Moderna and Novavax COVID-19 vaccines. Below, hear from a few participants about their experiences and perspective on why it’s important for communities of color to be a part of these trials.
Pastor Wil Nichols of Victorious Praise Fellowship Church in Durham, N.C. is a participant in the Novavax clinical trial.
“I’m African-American, I’m over 50, and I felt like that was a group that needed to be studied,” he said.
Nichols said he understands why some people might feel skeptical about trials, but that he wants to speak to those who look like him, “Number one, I am taking the vaccine, because I think it’s important, number two, I am participating in the study because we are important.”
For Keisha L. Gibson, MD, MPH, pediatric nephrologist at UNC Health, participating in the Moderna COVID-19 clinical trial is necessary to reversing medical disadvantages that communities of color face.
“We’ve not always done the right thing. Those scars are still very real today. When I’m talking to families because that distrust is there, it’s important to acknowledge that and provide the education about all the steps we have employed so that people are protected moving forward. We all certainly understand where this distrust comes from, but we have to understand that if our response is to not engage, not to take part in these trials, we will always allow this communities to stay at a disadvantage.”
Janeth Pearl said she considers it a responsibility and a privilege to participate in the Moderna trial.
“We have all been significantly affected by the pandemic…our community still needs volunteers and I invite you to join us in participating in the study,” she said.
Craig Cameron, PhD, chair of the UNC Microbiology and Immunology Department and participant in the Moderna COVID-19 clinical trial said he felt like participating was a way to contribute toward fighting the pandemic, especially in Black communities.
“Once I heard that they needed diversity in particular in the trial, I thought it was something I could do, and I could help contribute to the data that’s necessary to see if, in my population, you would see an effective response,” he said.
To learn more about all COVID-19-related clinical trials at UNC and to find out if you are eligible to participate, visit the UNC COVID-19 Clinical Research website.