Why aren't there more Black women in clinical trials? Experts explain.

Despite representing 50% of the U.S. population, women are generally underrepresented in clinical trials. For example, women represent 38.2% of participants in cardiovascular clinical trials. When you intersect race with gender, that representation is even less. Many studies have uncovered an uncomfortable truth: Black women are often not asked to participate in clinical trials at all.

According to a 2022 study published in the Journal of the National Medical Association, “Despite multiple efforts, African American women continue to be inadequately represented in clinical research while being overrepresented in disease, producing research results with limited generalizability to this specific population.” When you look at breast cancer — a disease from which Black women are still dying at a nearly 40% higher rate than white women — one study found that nearly half of Black women with metastatic breast cancer never receive information about clinical trial opportunities.

Study shows Black women want to participate in clinical trials

A recently released study by GCI Health that looked at Black women’s perceptions of clinical trials found that nearly 73% of Black women have never been asked to be in a clinical trial. Getting into a clinical trial begins with recruitment, a formal ask from a health care professional and an explanation of what the clinical trial process is. Black women are not actively opting out of participation. They are less likely to have the opportunity to opt in.

“The survey illuminated two key issues,” Kianta Key, co-author of the study and group senior vice president of GCI Health, tells Yahoo Life. “It’s about Black women feeling informed and empowered to participate in a clinical trial because, based on our survey, they are willing.” Key says that much of the medical community has been operating with the perception that Black women do not want to participate in clinical trials. However, nearly 50% of survey respondents said they have a positive view of clinical trials.

Despite the fear of possible side effects or the historical or contemporary mistreatment of Black women in health care settings, 80% of survey respondents said that they are likely to participate in a clinical trial if asked, while 68% shared that they had a good or exceptional experience in a trial. When Black women were asked what they would need to know to participate in a clinical trial, the top five answers focused on safety and support from the health care team. Despite medical distrust, survey respondents said they would be more willing to participate if their doctor endorsed their participation.

Importance of including Black women in clinical trials

Historically, clinical trials were offered to men, not women. In the 1990s, the National Institutes of Health began requiring that women be included. However, gender inequity still exists. Cardiologist and oncologist Dr. Tochi Okwuosa, a professor in the department of internal medicine at Rush University, tells Yahoo Life that more participation by Black women is crucial. “You can’t say, ‘OK, I’m studying a white man and I’m going to apply what I’ve studied to a Black woman.’ They are a very different demographic,” Okwuosa says. Including Black women in clinical trials allows researchers to better understand the disease processes and how best to treat them or manage their conditions.

For example, women tend to think that they’re not at high risk for heart disease, despite the fact that it’s the leading cause of death for women in the U.S. It’s often thought of as a man’s disease. That’s because for years, clinical research involved only men. Now, with research required to include more women, we’re learning that women have cardiovascular disease at an equal rate as men. And scientists are finding that the symptoms are different for women than they are for men.

“Two people will respond differently to the same treatments,” Dr. Rohan Khera, assistant professor of medicine at Yale School of Medicine, tells Yahoo Life. Khera points out that if a large section of the population is not included in a study, treatments like cardiovascular therapies may not seem effective if they’re only tested in the groups that may not benefit from them. The inclusion of Black women can ensure treatments are found that work for them. Researchers can also find treatments that have a larger effect by being more inclusive, thereby enabling availability of newer therapies.

What can make a difference

With the White House’s recent initiative to fundamentally change how we approach and fund women’s health research, there is some hope that communities and the health care industry are ready to take on a multilayered approach to achieve equity in women’s health research — and, by extension, Black women’s health research.

In the meantime, there are several ways to increase engagement of the Black community overall and to increase participation of Black women in clinical trials. “The institutions granting the research money should require that the clinical trials enroll Black women, because they are underrepresented in research,” says Okwuosa, “and to accomplish that, there must be a movement to engage members of underserved communities in clinical trials so they will enroll.”

Khera encourages increasing the work with communities to develop recruitment materials that reflect aspects of the science that would be important to communicate to develop interest. One important way to build trust and increase participation in clinical trials is to start with children — namely, educating children about health and the importance of healthy living.

For lifestyle illnesses like heart disease, it’s important to improve cardiovascular disease detection that can identify people in the communities with early stage disease, say experts. Involving faith leaders and respected members in the Black community would build trust and get people engaged and willing to participate. If they support the research and see the clinical trial as important, it becomes easier to engage the community to enroll.

Understanding what the research is about and how it’s going to benefit them and their community, along with the risks, should be explained up front, experts suggest. It helps to reach people where they are. That may be in the barbershop or beauty salon, churches, community centers — places where people gather and talk about things. It also helps to have someone who looks like you ask you to enroll. This builds trust.

Making it more seamless to participate in clinical trials and making sure procedures are easier for people across backgrounds to participate in, along with compensating people for their time, are also key. Doing all this and more can help to build partnerships with Black communities that will improve health outcomes for Black women and their families.