The Health Divide: Black people are underrepresented in clinical trials, making disparities even worse

Andrew Hutchinson is a 47-year-old construction worker from Hurricane, Utah, who spends his free time traveling to different states to participate in clinical trials. 

“It allows me to help people, and it pays well, so it’s a win-win situation,” Hutchinson said. “By doing my part, I’m helping to advance medical research and possibly save someone’s life.” 

Participating in clinical trials can also be lucrative; one year, he earned $80,000.

On June 9, Hutchinson began a 41-day clinical trial for cancer research at Fortrea Clinical Trials in Madison, Wisconsin. On June 12, he received an oral pill. He will be monitored and given another dose in 20 days.  

During his in-house stay, his food and liquid intake are monitored, and he shares a room with another participant. Upon completing the trial on July 19, he will receive a payment of $21,000.

“It’s not a bad deal because they house and feed you, and you get to watch TV,” he said. 

The worst part so far has been sharing the room with another participant who has sleep apnea. (Hutchinson does not have cancer and only participates in such studies to demonstrate how quickly people’s bodies metabolize medications.)

Clinical trials are essential for advancing medical knowledge and developing effective treatments. When the research is done well, the process safeguards the public and yields significant breakthroughs that improve health outcomes. However, overall participation in trials in the United States is relatively low, with only about 5% of adults having participated in one, according to the Health Information National Trends Survey.

Hutchinson, who is white, began participating in clinical trials four years ago. The latest cancer trial he joined is his 20th. 

But while whites like Hutchinson are overrepresented in clinical trials, African Americans are significantly underrepresented. An analysis of over 433,000 patients who participated in clinical trials in the UnitedStates between 2010 and 2021 revealed that Black individuals comprised only 8.5% of participants in oncology trials, despite accounting for less than 15% of the overall population. For Alzheimer’s disease, the percent of Black people in trials dropped to 5%. 

Due to higher rates of diseases such as heart disease, diabetes, dementia, and strokes among Black individuals, researchers say their involvement in clinical trials is essential for developing effective treatments and preventive measures.

Blacks have historically expressed skepticism toward studies

In 1966, Dr. Martin Luther King Jr. addressed the Second Convention of the Medical Committee for Human Rights, stating: “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.”

Today, racial inequities in health care and research persist. Increasing the number of Black participants in clinical trials can help reduce those racial gaps. When Black people participate in clinical trials, it ensures that the treatments, tests, or interventions being studied are effective for the Black community. 

Historically, Black individuals have been skeptical of the medical field due to a long legacy of unethical research practices, most famously in the Tuskegee Syphilis Study, which ran from 1932 to 1972 and fostered a deep mistrust of the medical community that lingers to this day. The study was supposed to observe the natural history of untreated syphilis. But during the study, researchers did not inform participants they had syphilis. They also did not offer treatment, even after it was readily available, leading to a series of severe health consequences, including blindness, mental illness and death. 

The study led to long running concerns in Black communities that researchers are liable to prioritize scientific goals over participant well-being.

By contrast, that’s not a widespread fear shared by Hutchinson and many white Americans. He takes heart in his belief that medical standards have improved significantly since the 1970s. Most of his clinical trials have proceeded smoothly, with only a few drawbacks related to reactions from the medications. 

In one cancer trial, Hutchinson reported that the study was canceled on the same day the drug was administered after several participants experienced swollen lips and bumps on various areas of their bodies. Although the 21-day study ended on the first day, participants were sent home and received follow-up calls to check on their conditions. Additionally, they were awarded 90% of their $21,000 compensation.

Clinical trial duration and compensation can vary significantly based on the number of overnight stays, outpatient visits, and the scheduled phone calls completed. 

For instance, while exploring the Fortrea Clinical Trial website, I learned I was eligible to apply for three different studies that tested a pill to fight infections. The compensation for these studies varied from $5,578 for a seven-night stay, which includes two follow-up calls, to $15,480 for a 29-night stay with one follow-up visit.

In 2007, while I was a Nieman Fellow at Harvard University, I participated in a clinical trial after seeing advertisements around campus and in local papers. I took part in a diet pill study that aimed to compare the effects of various diets on weight loss, focusing on diets with differing levels of fat, protein, and carbohydrates.

To join the trial, I had to undergo several tests, including a weigh-in and a heart rate measurement. During the study, I successfully lost 9% of my body weight. But I also experienced some side effects, including headaches and nausea. The experience required a significant time commitment and a major change to my regular eating habits.

The testing company continued to contact me to see if I would be interested in participating in other trials. They also wanted to know if I knew of any other African Americans who would be willing to participate, even years after I had moved back to Wisconsin.

Better participation in trials could help address disparities

Clinical trials can play a vital role in health care by providing patients with access to innovative therapies and treatment approaches that aren’t yet widely available.

For instance, Black and Hispanic children with leukemia often experience worse outcomes.

One explanation may be the lower enrollment of these groups in clinical research, said Paibel Aguayo-Hiraldo, medical director of transplant and cellular therapy at the Children’s Hospital Los Angeles, in a 2023 interview.

Stories of Black participation or experiences in clinical trials are not common in the media. I can’t help but thinking more coverage of these issues — sharing participants' stories, highlighting the importance of these trials, and addressing barriers to involvement — could make a meaningful difference in persuading more people in diverse communities to sign up.

Hutchinson initially felt hesitant about participating in clinical trials because he was concerned about the potential harm the drugs could do to his body. He now says he has never felt healthier. 

“I know that my actions will benefit someone else,” he said. “I understand that different races are affected in various ways, so it’s essential for more people of color to get involved.”