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.”
* * *
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.”
* * *
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.