“We have to be able to build trust in these communities, because historically, this industry has not been very kind,” said Jackson, the founder of The Beautiful Way Foundation, a nonprofit dedicated to improving health equity.
Jackson, other health equity advocates, and medical professionals have been working to address the prevalent medical mistrust in Black communities, which makes it difficult to recruit for clinical trials. Doctors tout the benefits of participating in a clinical trial and say it’s an opportunity to access emerging medication earlier. But if these studies lack diversity, it’s harder to assess the safety and efficacy of medicines across racial and ethnic groups.
Though Black Americans represent 14 percent of the US population, they account for about 5 to 7 percent of clinical trial participants, according to the National Cancer Institute.
These statistics are concerning to medical professionals, because Black individuals are at higher risk than other racial groups for certain diseases, such as glaucoma, which causes blindness, said Dr. Manju Subramanian, who specializes in eye care at Boston Medical Center.
Among about 100 clinical trials for glaucoma, 16 percent of patients recruited were Black, even though Black individuals are three times more likely to experience the disease than those of European ancestry, Subramanian said.
“There are certain diseases that we see in certain groups of individuals more commonly,” she said. “You want the representation in the clinical trial to reflect what the disease burden is for that population.”
Doctors and advocates sense that medical mistrust among Black Americans remains widespread. Sixty-one percent of Black adults say that research misconduct is just as likely to occur today as it was in the past, according to the Pew Research Center.
Suspicion toward clinical trials is tied to a history of unethical medical experimentation on marginalized communities. For example, in the infamous Tuskegee Syphilis Study, conducted between 1932 and 1972, researchers did not give poor, rural Black male patients with syphilis any treatment, and more than 100 were left to die; researchers saw the mistreatment as a way to study the disease. Black women and women of color were also sterilized against their will throughout the 20th century.
“We get clear messages from the adults around us about not wanting to be a guinea pig or being experimented on. … It’s all very traumatic still,” said Donna Bright, the executive director of the Center for Community Health Education Research and Service Inc., an organization dedicated to improving health outcomes for Bostonians of color.
To solve the problem, local leaders and doctors urge the pharmaceutical industry to tap into the networks that underrepresented populations already trust, like the doctors they grew up with and community groups.
There’s a disconnect between pharmaceutical companies and the communities they are trying to recruit from, Jackson said. On one hand, companies attribute the underrepresentation of Black participants to socioeconomic burdens associated with accessing clinical trials, like transportation costs. But those are “minor concerns” compared to the day-to-day struggles, like securing stable employment and putting food on the table, she said.
To build trust in underserved communities, companies should engage with these non-medical concerns and invest in the well-being of groups from which they’re trying to recruit, she said. That’s why her open clinic will include dental care, clothing drives, and a food pantry, she said.
“In order to be able to get people enrolled in clinical trials, you have to go on that journey with that person,” she said.
For some Black patients, deciding to enroll in a clinical trials takes learning about the process from a familiar face, like their family doctor.
In 2022, Ahjanee Brown Sampson, from Charlestown, started feeling pain in her chest, leaving her petrified. She caught COVID-19, which was especially worrisome for Brown Sampson, then 16, because she has asthma and is at special risk.
She turned to her doctor at Boston Medical Center Katherine Gergen Barnett, who mentioned a clinical trial for Paxlovid, a drug that mitigates severe COVID-19 symptoms. Gergen Barnett was the principal investigator for a pediatric clinical trial for the drug.
At first, the teenager was skeptical about participating. So were her family members, who questioned the consequences if the medication failed.
But Brown Sampson wanted her health to improve, so she opted in, becoming the first participant to be enrolled at Boston Medical Center. She trusted Gergen Barnett, a doctor she grew up with.
“If it was a different doctor, I probably would have said, ‘no,’” Brown Sampson said. “I don’t want no other doctor. I’m looking for her.”
Gergen Barnett said “closing the gap takes conscious effort,” and effective recruitment can come down to relationships. She values having honest conversations with her patients at Boston Medical Center, which is the largest safety net hospital in New England, with about 73 percent of its patients coming from low-income populations.
Often, the scientific community does not adequately explain the process of a clinical trial, according to Gergen Barnett. Clinicians need to be trained to discuss them, especially to populations who have been historically hurt by medical institutions, she said.
“Trust drives so much, but it is a very undervalued resource in medicine and especially in clinical trials,” she said.
Community events are productive places to raise awareness about clinical trials, Gergen Barnett said, but the choice is ultimately left up to the individual. Participation requires a full, informed consent.
“It’s also about having a voice and a representation … [in] the way that science is done,” she said. “It’s truly a collaboration and a partnership in order to be in the clinical trial.”
This story was produced by the Globe’s Money, Power, Inequality team, which covers the racial wealth gap in Greater Boston. You can sign up for the newsletter here.
Jessica Ma can be reached at jessica.ma@globe.com.
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