When it comes to clinical trials, representation has long been at the forefront of the conversation, particularly because Black Americans have historically been underrepresented in clinical trials. Today, as conversations around diversity in medical research continue, there is a growing recognition of the importance of including Black patients in research.
In sexual health clinical trials, greater representation can help researchers better understand how treatments, medications, and prevention strategies work for Black patients. Despite the need for greater representation, Black patients continue to face barriers that can make participating in clinical trials challenging or even make it difficult to find them.
“Black communities are disproportionately affected by several sexual health conditions, including HIV and certain sexually transmitted infections, but have not always been adequately represented in the research used to develop treatments and prevention strategies,” says Joyce H.N. Nortey, Sr. Director of Clinical Research & Operations at Evidation Health and Research Advisor for the Fibroid Foundation. “If our communities carry a significant share of the burden, we also need to be visible in the evidence.”
“This is not about suggesting that race itself is biological. It is about recognizing that health is shaped by the conditions in which people live and receive care. Racism, discrimination, access to healthcare, other health conditions, and the ability to consistently obtain and use a treatment can all affect outcomes.”
Nortey explains that when Black patients are underrepresented in clinical trials, researchers may not get a complete picture of how well a treatment works in everyday life, including whether it is affordable, easy to use consistently, and responsive to patients’ needs and preferences.
While medical mistrust may be one of the reasons Black people are not represented in clinical trials, there are other factors. Patients may worry about privacy, stigma, or judgment when asked to disclose personal information about their HIV status, sexual practices, relationships, sexual orientation, or gender identity. Practical barriers can make participation difficult, too, including transportation, childcare, work, and simply not knowing that trials are available.
De-Andrea Blaylock-Solar, LCSW, CST, a sexuality and relationship therapist, says fear of being judged is one thing that keeps Black people from openly discussing their sexual health. Clients have shared experiences where healthcare providers exhibited implicit bias and made them feel uncomfortable. Some felt as though their providers made assumptions because of their race or did not consider their culture when developing treatment plans.
She adds that feeling as though you have to explain your experiences as a Black person in America can be exhausting. Patients should not have to shoulder the responsibility of educating their healthcare providers on cultural humility.
“Mistrust is not simply a problem within Black communities that researchers need to overcome,” Nortey says. “It is often a reasonable response to historical abuse, ongoing discrimination, and present-day experiences of not being heard, believed, or treated equitably.”
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Greater representation can help researchers understand not only whether a sexual health treatment or prevention method works in a clinical setting, but whether it realistically fits into patients’ everyday lives. For example, Nortey says research could provide greater insight into whether patients prefer a daily pill, an injectable medication, a longer-acting option, or a community-based service. Researchers could also better identify barriers that make an otherwise effective intervention difficult to use, such as cost, transportation, clinic hours, privacy concerns, or stigma.
Those findings could ultimately influence more than individual treatment decisions. Better evidence can help inform which treatments insurers cover, where public health resources are invested, and what services are available within Black communities. But Nortey stresses that inclusion only makes a meaningful difference if participating communities can access the resulting treatments and services.
When it comes to inclusion in clinical trials, providers can play a major role simply by making patients aware that research participation may be an option. Rather than waiting until standard treatments have failed, providers can discuss clinical trials alongside other care options when appropriate. “Many patients never consider participating because no one tells them that the opportunity exists,” Nortey adds.
That also requires providers to recognize how unconscious bias can influence assumptions about whether a patient will be interested in a trial, understand the study, or be able to follow its requirements. Instead of making that decision for patients, providers can give them the information they need to decide for themselves.
When patients have concerns, Nortey says the conversation should begin with listening. Providers can ask what concerns they have, whether previous healthcare experiences are influencing those concerns, and what information they need to make an informed decision.
Patients should also receive clear information about the study’s purpose, potential risks and benefits, costs, compensation, privacy protections, and available alternatives. They should understand that participation is voluntary, declining will not affect their care, and they have the right to change their minds. “Consent should be an ongoing conversation, not just a signature on a form,” Nortey emphasizes.
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More inclusive research isn’t simply about increasing the number of Black participants enrolled in a study; it’s about designing studies that actively reflect the population they’re intended to serve.
“I wish that providers worked through an intersectional lens, understanding how various aspects of a client’s identity can impact their experiences of oppression and pleasure,” Baylok-Solar says. “Providers should avoid assumptions and work to build trust with Black clients who may have a mistrust of the medical industry.”
Building that trust also extends beyond individual providers. Nortey says institutions should develop relationships with Black communities before a study opens for recruitment, giving community members opportunities to help shape research questions, procedures, privacy protections, and how results are shared.
Ultimately, greater Black participation has the potential to produce sexual health research that better reflects patients’ real-world needs. But Nortey says success should extend beyond enrollment numbers to whether Black communities are ultimately “healthier, better informed, more respected and better served because the research took place.”
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