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Understanding Clinical Trials: 5 Black Women on Why They Matter

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Clinical trials are essential scientific studies that test how drugs work in different populations, but Black women remain severely underrepresented in this research. Clinical trials editor Taylyn Washington-Harmon moderated a panel discussion on Clinical Trials Day, with speakers representing patients, pharmaceuticals, and marketing emphasized how this lack of representation impacts medical care for Black women and shared strategies to increase participation.

What is a clinical trial?

Ricki Fairley, Co-founder & CEO of TOUCH, explained what exactly a clinical trial is: “Data means the information that we take away from the trial… It’s basically what we learn from the science. So when a group of people, however big or small they are take this drug and we watch what happens to them. Do they get better? Is it safe? Do they have different side effects?”

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Dr. Angela James, Founder & CEO, Diversity Health NetWoRx, highlighted why diversity in these trials matters: “[Black] bodies are different. Our physiology is different. Not just how the drug behaves in our bodies can be different, but how our bodies behave on the drug. So how we absorb it, how we metabolize it, those types of things all play into what kind of dose you get, and how frequently do you get the dose.”

The consequences of insufficient representation are serious. Dr. James noted: “There are drugs that do simply do not work well in Black people that are being used in Black people. There are better options, and clinical trials give us that opportunity to not only evaluate it, getting representative patient populations, but also saying, what are we gonna do with the information we’ve collected?”

Why Black women aren’t taking part

Despite common misconceptions, Black women aren’t unwilling to participate in clinical trials. Kianta Key, Cultural Marketing Lead at GCI Health, revealed survey results: “We surveyed 500 Black women… Have you ever been asked to be a part of a clinical trial? And if you were asked, would you say yes? Most of the ladies we talked to, about 73% said they have never been asked to be a part of a clinical trial, and almost 40% of them were living with a chronic condition. But when we asked them, would you say yes, 8% [said they would] participate if asked.”

This represents a communication failure, not a recruitment challenge. “It’s not that Black women are hard to reach. We are hardly being reached,” Key emphasized.

Clinical trials save lives

For Ricki Fairley, participation in a clinical trial was literally lifesaving: “When I had triple negative breast cancer, I did all the things. I had a double mastectomy. I did the standard of care drugs at the time. I did radiation, and my cancer came back in a year… And so had I not advocated for myself and gotten into a trial drug, I would be dead.”

Amanda Bishop, Clinical Trial Diversity Program Lead, Associate Director, Clinical Operations at Merck, stressed the value of knowledge: “In order to really be able to know what’s happening with our bodies, to understand diseases and conditions, to understand preventative factors, and to understand treatment effectiveness, it’s just very important that we’re included in clinical trials.”

Moving forward: Education and advocacy

The panelists agreed that education and communication are key to increasing participation. As Key noted, “With information comes knowledge, with knowledge comes empowerment. And I think that’s what, hopefully, we’re moving toward. How can we give Black women the tools?”

Resources like BlackDoctor.org’s Clinical Trials Resource Center provide information about available trials, while initiatives like GCI Health’s cultural marketing approach treat “the patient participant as a consumer” to reach people where they are.

The message is clear: increasing Black women’s participation in clinical trials isn’t just about better science—it’s about saving lives through more effective, personalized medicine for everyone.

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