From Campus to Classroom: Stories That Shape Education
- Dr. Adrelia Allen at Merck works to normalize clinical trial conversations in communities, not only during last-minute doctor visits.
- Acknowledges historical abuses like Tuskegee and Henrietta Lacks, emphasizing informed consent, patient rights, and rebuilding trust.
- Addresses practical barriers with transportation, flexible visits, caregiver support, representative staff, and outreach like Let's Talk Trials; many Black patients were never asked.
For generations, medical research has asked Black communities to trust a system that has not always earned it. Today, Dr. Adrelia Allen is trying to change that – one conversation at a time.
In her role as the executive director of Clinical Trial Patient Representation at Merck in New York, Allen wants the topic of participation in clinical trials to become less of a last-minute conversation between a doctor and a newly diagnosed patient and more of an everyday discussion in the communities those trials are intended to serve.
That means confronting a painful history, but also looking beyond it. It means ensuring patients understand their rights, know what participation involves and have practical support when they need it.
“As we speak and talk about the Black community, what are some of those past atrocities that have occurred? And where have we taken this journey to really bridge the gap in making sure that Black communities are a part of the clinical research landscape?” Allen told The Root in an exclusive interview. “We cannot ignore or even look beyond the issues of Tuskegee and Henrietta [Lacks].”
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The Tuskegee syphilis study, conducted from 1932 to 1972, involved hundreds of Black men who were not fully informed about the study and were denied effective treatment after penicillin became available, the CDC reported. The abuses helped spur major changes in protections for people participating in medical research, including stronger informed-consent requirements.
In 1951, cells taken from Henrietta Lacks during treatment for cervical cancer were used to create the HeLa cell line without her knowledge or consent, according to PubMed Central. The cells went on to become enormously important to biomedical research.
Allen has seen the impact of that history on her own family. Her father once hesitated to undergo an MRI after doctors suspected prostate cancer because, she said, the procedure triggered memories of Tuskegee.
“He just refused to proceed because he didn’t want to be treated as a guinea pig,” she said.
Allen, a pharmacist by training, said she explained to her father that patients have rights and that participation in research is voluntary. Patients can ask questions and choose whether to participate and when to withdraw from a trial.
But distrust is only one barrier. Transportation, time away from work, caregiving responsibilities and the cost and logistics of repeated appointments can also make participation difficult. For patients already struggling to afford or access routine health care, joining a clinical trial may feel out of reach.
Allen says pharmaceutical companies and research institutions can help by offering transportation assistance, supporting caregivers, making visits more flexible and working with community-based organizations.
Just as important is who delivers the message. Black patients may be more comfortable when they see doctors, researchers and clinical trial staff who reflect their communities.
Merck’s “Let’s Talk Trials” campaign aims to move conversations about clinical research beyond the doctor’s office, using accessible information, videos and stories from people who have participated in trials.
Allen also believes the problem is sometimes simpler than people assume: Black patients may not be rejecting clinical trials – they may never have been asked.
“It’s not a lack of us not wanting to participate,” Allen said. “The main reason we see Black and other underrepresented communities participating in clinical trials is they haven’t been asked.”
Representation matters because researchers need diverse data to understand how investigational medicines work across different populations. Without that representation, Allen said, researchers are missing a piece of the picture, which she compares to completing a puzzle.
“I can have all of the pieces of my puzzle all in place, but if I don’t have that one particular piece, that’s an incomplete picture of what the outcome of that puzzle should have really portrayed,” she told us.
For Allen, closing that gap is not about persuading people to participate. It is about making sure they have trustworthy, understandable information — and the ability to make their own decision.
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