Cleveland Biobank Increasing Participation, Gaining Trust Of African-Americans
Tom Cammon recently contributed his blood to join hundreds of other specimens in Cleveland Clinic’s African-American Biobank.
"By signing today you understand I can take your blood and I can take your urine and there will be no compensation," a nurse said to Cammon as he reviewed the mandatory consent form.
After Cammon gave blood, it was frozen and then placed in a special temperature controlled freezer in the Clinic’s Learner Institute.
His specimen will be used in future research studies to find answers about diseases which disproportionately affect African-American men, said Cleveland Clinic Urologist Dr. Charles Modlin.
Specimens are kept in a special freezer in the Lerner Institute. [Marlene Harris-Taylor / ideastream]
The brainchild of Dr. Modlin, the biobank was specifically created to collect specimens from African-American male, took several years to get off the ground.
Researchers in Cleveland — and nationally — struggle to get people of color to submit to invasive procedures for studies and clinical trials, he said.
African Americans in particular have a distrust of the medical community, rooted in historical abuses such as the infamous Tuskegee syphilis experiment. The Centers for Disease Control calls it an unethical 40-year government study where hundreds of black men were never given penicillin so researchers could see how the disease progressed.
Cammon said he is aware of some of the terrible stories of past research abuses.
"You know we don’t forget that easy," he said. "You know it probably won’t ever go away."
Despite his general skepticism, Cammon is okay with the clinic keeping his blood specimens on ice forever because of his relationship with Dr. Modlin, he said.
“I, and other individuals, have developed a presence in the community," Dr. Modlin said. "And that’s been intentional. We spend a lot of time in churches and other organizations trying to be known. We’re trying to develop the trusting relationship."
Dr. Modlin developed the idea for the African-American biobank, a few years after he started a minority men’s health fair 16 years ago.
Dr. Modlin greets men at the health fair. [Marlene Harris-Thomas / ideastream]
In the first few years of the health care, he was reluctant approach men about saving medical specimens for use in research studies because of the past abuses. Dr. Modlin didn’t want to be perceived as one of the researchers who only reach out to the black community when they want something.
But after he built trust with participants who came back to the fair year after year, he started asking some if they would consent to be part of the biobank.
Dr. Modlin believes this is the only biobank in the United States dedicated specifically to obtaining samples from African Americans.
"We want to make those samples available to any researcher here at Cleveland Clinic, any investigator worldwide, who wants to dedicate a portion of their research to eliminating health care disparities, to investigating the pathogenesis of a lot of these diseases that we see are more commonly afflicting African-American males,” Dr Modlin said. For example, African-American men are 60 percent more likely to develop prostate cancer than white men and more than twice as likely to die of a stroke, he said.
Some Cleveland Clinic researchers have already used the biobank specimens. Dr. Qing Wang, a molecular cardiology researcher, used some of the specimens in a study of genes associated with heart disease and heart attacks in African-American men.
Setting an Example
Other researchers should take note of how Dr. Modlin was able to work with the African American community and how he built the biobank, said Dr. Monica Webb Hooper, a researcher at Case Western Reserve University. The medical community as a whole is doing a poor job of recruiting diverse people for studies and clinical trials, she said.
"Clinical trials are really the gold standard of how we develop and test new interventions and it is how we decide what medications we should administer for certain conditions," said Dr. Hooper, who also recruits participants for her studies on smoking.
A recent survey and listening tour of Cleveland’s African-American community organized by Case Western confirmed that people are leery of clinical studies, she said, but there are exceptions.
"They would participate in studies if it were a survey or a behavioral study, but if the studies were testing a new drug or were anything invasive at all, specimen donation of samples of urine, blood, those sorts of things, then there was a more reluctance to participate," Hooper said.
Lack of Diversity is a Big Problem
Case Western Reserve University bioethics professor Dr. Suzanne Rivera is very involved in overseeing research practices locally and on the national level. The lack of diversity of participants is a big problem, Dr. Rivera said.
Scientists avoided using diverse populations in studies for many years because of some of past abuses, she said. They felt it was safer and more ethical to use white men as the gold standard.
"That white male body was treated almost like the prototypical human," Dr. Rivera said. "And whatever information was derived from studies based on that population were assumed to be broadly applicable to everyone. Recently, the National Institutes of Health and university researchers and ethicists have been emphasizing that inclusion of all populations is important."
Researchers, however, still need to do more to attract diverse participants, such as having flexible hours so people plan around their workday, she said. Having more meetings in familiar settings and away from college campuses, such as churches and community centers, also would help, she said.
"It should not be the case that participating in trials is a leisure activity that’s only for people who can spare the time and effort," Rivera said.
Dr. Modlin’s patient, Tom Cammon, has lived in the neighborhood around Cleveland Clinic for 66 years, he said. But was never asked to participate in a research study — not until he attended the minority men’s health fair.
"It's just now that we feel comfortable about coming here — that we know we can get in here and get the same treatment as other people," he said.