Black people in the United States continue to face higher rates of chronic diseases, such as heart disease, diabetes, cancer, and lupus. Yet, we remain significantly underrepresented in clinical trials. This lack of representation can lead to gaps in safety and effectiveness data and missed opportunities for more personalized and equitable healthcare.
While conversations about clinical trial participation often focus on mistrust, the reality is far more complex. Many Black patients aren’t informed about medical research opportunities at all. In contrast, others face significant barriers to participation, such as transportation challenges, limited access to major academic centers, unpaid time off work, or confusing medical language during enrollment.
As healthcare shifts more towards precision medicine and AI-driven care, ensuring we’re fairly represented in clinical research is more important now than ever. Without diversity participation, new therapies and technologies may fail to fully address the needs of our communities most impacted by chronic disease.
The Biggest Barrier? Many Black Patients Are Never Asked to Participate
The underrepresentation of Black people in clinical trials is not just about mistrust — it’s also about a lack of outreach from healthcare providers and researchers. Some reports show many Black patients say they were never informed about trial opportunities.
This occurs for several reasons, including:
- Provider bias and assumptions
- Lack of referral systems
- Clinical trials are concentrated at large academic centers
What Happens When Black Patients Are Left Out of Medical Research?
Medical treatments, including medications, procedures, and devices, can vary in effectiveness across populations. With that in mind, it’s crucial to have diverse representation in clinical trials, as certain side effects might be missed in Black patients when they’re not included in research. And as AI and precision medicine become more popular and integrated into medicine, they can introduce bias when datasets lack diversity.
While all condition-based clinical trials could use a fair amount of Black participants, certain diseases and conditions disproportionately affect our community that needs more representative data, including:
If we’re not involved in the clinical trials for these diseases and conditions, we may not see better outcomes.
Why Medical Mistrust Didn’t Come Out of Nowhere
There has been a general distrust of the healthcare system among some Black Americans since the infamous Tuskegee Syphilis Study. On July 26, 1972, the New York Times reported on what it called the “longest-running non-therapeutic experiment on human beings in medical history.” Departing from their Hippocratic oath to “First, do no harm,” physicians from the U.S. Public Health Service allowed nearly 400 poor, Black sharecroppers with syphilis to go untreated for 40 years.
These men from Macon County, Alabama, were told they were being treated for “bad blood.” However, they were all actually part of the Tuskegee Syphilis Study, which was designed to study the progression of syphilis — a potentially fatal sexually transmitted disease.
Many health professionals and leaders in the Black community cite the Tuskegee Study as a factor contributing to low participation of Black Americans in routine preventive care, clinical trials, and organ donation.
While the Tuskegee Syphilis Study may be a major contributor to low participation of Black people in clinical trials, it’s not the only one. Other factors contribute, including:
- Henrietta Lacks
- Ongoing disparities in pain treatment and maternal mortality
- Fear of exploitation
- General mistrust
Fortunately, we’ve seen major changes in how medical research involving humans is conducted, with oversight by the U.S. Food and Drug Administration (FDA) and the creation of Institutional Review Boards (IRBs).
An IRB must approve all studies involving human or animal subjects in advance. Complaints should be addressed to the director of the study or the institution’s IRB. IRBs are made up of physicians, ethicists, religious leaders, and other community leaders and are required to review studies that will use human or animal subjects.
An IRB’s main responsibility is to protect the public from harm and to carefully review each study’s methods to ensure the research is conducted ethically.
It’s Not Just Trust — Access Matters Too
Beyond medical mistrust, several barriers can keep Black patients from participating in clinical trials.
These include:
- Transportation challenges
- Unpaid time off work
- Childcare
- Lack of internet access
- Complicated medical language
- Limited trial locations in Black communities
These barriers highlight that clinical trial participation is often a structural issue, not just reluctance or hesitation.
10 Questions to Ask Before Joining a Clinical Trial
Participating in a clinical trial may feel intimidating for some, and that’s completely understandable. It’s important to know that you have the right to ask as many questions as you need to the research team to get a better understanding of what will be asked of you during the clinical trial.
Here are some questions you can ask:
- Who will be in charge of my care during the clinical trial?
- How will I be protected?
- Could I end up getting a placebo?
- What if I want to withdraw?
- What are the potential risks and benefits?
- What happens if my condition gets worse or I am injured during the trial?
- How long will the research last?
- Will I be paid for participating?
- Will I receive follow-up care after the study?
- Will the results be provided to me?
How to Find a Clinical Trial
If you’re interested in joining a clinical trial, reach out to your healthcare provider. They may have insight into open trials for a disease or condition you’re managing and can share information on how to participate.
Other resources to find clinical trials include BlackDoctor’s Clinical Trials Resource Center and ClinicalTrials.gov.
Final Thoughts
Clinical trials offer new ways to treat diseases and conditions for millions of people — yet Black people remain underrepresented in medical research. While long-standing medical mistrust, primarily stemming from historical injustices, is the main driver, unawareness about clinical trials and complex medical language during enrollment is also to blame. We can work towards changing the outcomes in our communities by joining clinical trials. Start by talking with your healthcare provider to see which option is right for you.
