Illyasha Peete spent the first years of her son’s life listening to his whistling breaths on the pillow next to her.
“I was always afraid that he was going to stop breathing at night, so for two years, he slept in the same bed as me,” she said.
As a single mother of an asthmatic son in Memphis, Tennessee, Peete worked hard to provide her child with the medical care he needed. Her son took medications, received allergy shots, and used a nebulizer, a machine that pumps vaporized medicine into the lungs. Eventually, Peete gave up her real estate agency business to work as a grocery store manager, just for better health insurance.
Despite her efforts, her son may have received treatments tailored to someone else. As with many diseases, the bulk of research on respiratory ailments in the U.S. has focused on white European-Americans, and Peete and her son are black. In May, a study in Immunogenetics out of the University of California, San Francisco, reported that only 5 percent of the genetic traits linked to asthma in European Americans applied to African Americans. Epidemiologist Esteban Burchard, who coauthored the paper, says other studies have also shown that different ethnicities have distinct genetic mutations that increase their risk for particular diseases and affect how they respond to medicine. Neglected by research, African American children have died from asthma at 10 times the rate of non-Hispanic white children.
To explain the lack of diversity in health studies and clinical trials, researchers sometimes blame recruiting difficulties. People of color—especially African Americans, the argument goes—harbor suspicion toward medical research and are less inclined to participate in it. Scientific papers, popular media, and advice for clinicians all have cited minority suspicion as a significant obstacle to recruitment. But several researchers who have conducted clinical trials with diverse participant pools say some studies just aren’t making enough of an effort to be inclusive. People of color are often happy to help with experiments, they contend—and racial suspicion may just be a convenient scapegoat for lily-white studies.
Far from feeling suspicious of doctors, Peete, who has relocated and now serves as the Bay Area executive director of the nonprofit Breathe California, says she wishes she’d had more access to medical knowledge about asthma. “They send you home with this child, and you know he could stop breathing at any minute,” she said. “There was no support group. There was no education.”
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History and the medical community’s demography may indeed cause some racial and ethnic groups to be skeptical of researchers’ intentions. “At least from the colonial period if not earlier, you can imagine that African Americans did not receive the best healthcare,” said Evelynn Hammonds, a professor of the history of science at Harvard University. During slavery, it was the slave master—not the slave—who could call a physician, usually with the aim to make a slave physically fit to work, and little more. Even after abolition, some researchers relied on bodies stolen from African American cemeteries, Hammonds said.
In the 1970s, the medical community’s abuse of African Americans reached national attention with the infamous Tuskegee experiment: a decades-long study whose investigators intentionally refrained from treating African Americans with syphilis. A paper circulated by the National Bureau of Economic Research for review this month suggests that, for older black men specifically, the Tuskegee experiment has measurably diminished trust in medicine and discouraged interactions with physicians.
Even groups that don’t share the same history of slavery—like Latinos and Native Americans—may feel alienated by a field that includes so few people who come from their communities, according to Burchard. “There’s some truth” to claims that people of color are suspicious of clinical studies, Burchard, who is Latino, said, “because there’s discordance in who gets studied and who’s doing the studying.”
In December, Burchard co-wrote a commentary in PLoS Medicine about the need for diversity in medical research. Since 1993, fewer than 5 percent of respiratory studies funded by the National Institute of Health have included reports on racial or ethnic minorities, he said, and fewer than 2 percent funded by the National Cancer Institute have met diversity goals. This imbalance persists despite Congress’ passing the Revitalization Act in 1993, which requires prioritizing the inclusion of people of color in federally funded trials.
Would-be study participants could also be suspicious of researchers’ goals because lead scientists are sometimes less inclined to make the trek from their labs to the communities where many minorities live, said JoEllen Wilbur, associate dean at Rush University’s College of Nursing, who frequently conducts health studies with African American participants.
“Once you show you’re really out there with them, you gain trust,” said Wilbur, “but sometimes the participants never even see the investigators.”
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Just because suspicion exists among some racial groups, said medical researchers, doesn’t mean distrust is as much of an obstacle as many scientists believe.
“When we talk about clinical trials, we tend to conflate them,” said Jill Fisher, an associate professor in the Center for Bioethics at the University of North Carolina, Chapel Hill. Though minorities are underrepresented in Phase III clinical trials—those that test drugs for efficacy—they tend to be overrepresented in Phase I trials—those that test drugs for safety and pay participants.
Indeed, in many cases, minorities may be just as willing as European Americans—or more so—to participate in clinical trials, according to Cary Gross, a professor of medicine at Yale University. In a review of 20 studies comprising 70,000 participants, Gross and his colleagues found little evidence of systemic differences in willingness to participate across races. “We’re not saying there’s no such thing as distrust,” said Gross. “[But] I think many investigators may not be taking the time to identify potential community partners for reaching out.”
What, if not distrust, are the major barriers to recruiting a diverse pool of participants in medical studies?
According to clinical trials specialist Karen Maschke of the Hastings Center, a bioethics think tank, logistical challenges prevent many minority groups from participating in research. “It’s a hassle to go get a doctor’s appointment,” said Maschke, especially when people must sacrifice work pay or find childcare. What’s more, medical studies frequently call for repeated visits, multiplying costs. Even parking can prove difficult, since hospital lots often come with fees.
And these difficulties assume minority communities learn about the study at all. Several researchers said the usual location of academic institutions in low diversity neighborhoods make diverse recruitment more difficult.
“Generally speaking, there’s a segregated healthcare system,” UNC’s Fisher said. “It’s really not a question of who’s willing to participate. It’s who’s being asked.”
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Despite a longstanding call to fund more medical studies reflecting the racial makeup of the American population, researchers in the area say little progress has been made. UCSF’s Burchard blames the failure to diversify studies on a system that distributes accountability across multiple scientific committees, leaving no one truly responsible for ensuring improvement.
The committees that distribute National Institutes of Health dollars, for example, are made up of scientists who have received grants themselves. “The scientists that are reviewing the grants are primarily white males,” said Burchard. “They’ll say, ‘This is my friend. He’s white, trying to get blacks, and he can’t do it. Let’s give him a pass.’” After failing to receive a grant for his most recent asthma study, Burchard funded the work with private donations.
Experts at the NIH and the Food and Drug Administration say diversity is a priority in health studies. What’s more, the NIH’s director of the Center for Scientific Review, Richard Nakamura, said the percentage of minority scientists reviewing grant applications is two times the percentage of those in the pool of active researchers. Jonca Bull, the FDA’s assistant commissioner for minority health, also called diversity in clinical trials critical.
Still, Bull suggested that some leeway would be granted to researchers. “It’s hard to say depending on the area that you’ll have an absolutely ideal study,” she said.
Experts who have successfully studied health in minority populations say a lot can be done to improve studies. For one thing, Rush’s Wilbur, who is white, said she spends time in the communities where she studies cardiovascular health. She attends church in the African American community of her research, recruits in beauty shops, and tries to ease childcare concerns by making babysitting services available and providing bags of toys for children who accompany their parents. Maschke, of the Hastings Center, recommended compensating participants for parking and providing meals like breakfast or lunch.
Burchard says scientists need to be more diverse. He has cultivated a network of bilingual researchers and community leaders to connect with potential study participants and has been named to the expert panel of President Barack Obama’s Precision Medicine Initiative. Among other goals, the $215 million initiative must assemble a research pool of one million or more volunteers, with an eye toward recruiting a diverse group.
Ultimately, the goal is to make sure that families like the Peetes can count on receiving effective care just as much as white European Americans can. Peete has never been asked to enroll her son, who is a teenager now, in a clinical trial, but she said she’d consider participating if asked, depending on the study’s goals and the commitment needed.
Peete’s son plays football and basketball. When Peete attends games, she clutches an inhaler and looks for signs that he’s having trouble breathing. “I can tell by the way his pads move up and down,” she said. For now, the best way she can help her son is to watch from the sidelines.