Clinical trials play a crucial role in advancing medical knowledge and developing new treatments, but there’s a persistent issue of the underrepresentation of Black women in these studies. This disparity was highlighted during a recent “Peach Table Talk” discussion on BlackDoctor.org, featuring health care professionals and advocates focused on endometrial cancer awareness.
Dr. Nia Bailey, a radiation therapist, raised an important question: “Do we need more Black women [in] clinical trials?” The resounding answer from the panel was a unanimous “Yes.”
However, there are significant barriers to increasing participation. Dr. Cynthia Bennett, an endometrial cancer survivor and advocate, highlighted the historical context that makes many Black individuals wary of clinical trials: “That’s the first thing that come up is the Tuskegee syphilis study.” This infamous unethical study has left a lasting impact on the Black community’s trust in medical research.
The importance of diverse representation in clinical trials cannot be overstated. As Dr. Candice Thompson, clinical assistant professor of surgery at Stanford Cancer Center, explained, “The medications that you were given, Dr. Cynthia, that were parts of clinical trials decades ago, were tested on women that didn’t look like any of us.” This lack of diversity in past trials means that potential side effects specific to Black women may have been overlooked.
To address these concerns, Dr. Thompson emphasized the importance of informed consent and the legal protections now in place: “There are laws that have been passed that ensured, especially for cancer trials, that you receive the standard of care, and you may even receive something better.” She also noted that research teams are available to answer all questions potential participants may have.
Dr. Bennett stressed the importance of thorough research and asking questions before participating in a trial: “I would have to do my research on this clinical trial, whatever it is that’s being offered. I would want to know who’s conducting the clinical trial. I want to know what’s involved, what are the risks, if there’s any medication going to be given, what treatments.”
Hayley Brown, the director of programming and partnerships at TOUCH BBCA, emphasized the potential benefits of clinical trials: “The drugs of today, we have a lot of proof they ain’t work anyways. And so, like, maybe the drugs of tomorrow are a good try because it’s like you know, again, we’ll we’ll it will say this. Whether they work or not, we know the representation of black women in those trials was was very limited.”
To increase participation, the panel suggested several strategies:
Education and outreach
Dr. Bennett proposed, “We could also reach out to the sororities. All the sororities, whenever they have affairs, we can have a table or something, flyers going out, and senior citizen programs.”
Targeting affected families
Hayley Brown suggested focusing on “women who have been affected by it. It wasn’t them that got it… when you got sick, why didn’t all those other women get alerted about things they could do?”
Addressing cultural barriers
Dr. Nia Bailey emphasized the need for transparency and honest conversations within the Black community: “Talk to your sisters about it. Talk to your friends… The honesty that we need to have, the transparency with those who look like us to, you know, help us help each other out.”
Empowering patients
Dr. Thompson stressed the importance of self-advocacy: “Always advocate for yourself. Ask questions when you ask about this. Have them explain things. Ask for a second opinion if you feel that you need one because a lot of people do that don’t look like this, so you should as well.”
Ultimately, increasing Black women’s participation in clinical trials is crucial for developing more effective treatments and understanding how diseases and medications affect this population. As Dr. Thompson pointed out, “If we’re parts of clinical trials now, we will be parts of the medications that are being received in the future, and we will know which side effects or how these drugs really affect Black bodies if we do get involved so we can help our Black women in the future.”
By addressing historical concerns, providing education, and empowering Black women to advocate for themselves, the medical community can work towards more inclusive and representative clinical trials. This, in turn, will lead to better health care outcomes for Black women and advance medical knowledge for all.
