Black women are open to participating in medical research if researchers seek them out.
New insights could be gained about health issues that affect Black women if researchers actively sought out more Black women to participate in medical studies.
That’s one of the conclusions being drawn from a new survey being released today by the Mayo Clinic that suggests Black women are willing to participate in medical research, but many are not being asked to.
The survey found that, despite few respondents reporting they had ever been asked to participate in a health-related research study, more than one-third were “extremely willing” to participate in a “biobank” or in genetic studies. Biobanks are repositories that store biological samples for research.
The survey also found that 13 percent of respondents were “extremely willing” to enroll in a clinical trial and that roughly a fourth were “extremely willing” to allow their medical records to be used for research.
“As a Black woman scientist, this is really great,” said Dr. Joyce Balls-Berry, a Mayo Clinic epidemiologist who is set to present the survey results in Toronto at the annual convention of the National Medical Association. “It means we’re willing to take an active part in our health.”
Balls-Berry said a longstanding complaint of researchers is that large numbers of Black women are “hard to reach” for research studies.
“A lot of times we’ll hear that Black women—especially highly-educated Black women—are not willing to participate in studies,” she said.
In an effort to help solve the problem, said Balls-Berry, the Mayo Clinic turned to The Links, Incorporated, a national African-American women’s volunteer service organization.
The self-administered survey is based on responses from 381 members of The Links, Incorporated. The survey was taken during the organization’s 2012 National Assembly and is part of an ongoing partnership between Mayo and The Links to end health disparities through research, education and advocacy.
The survey adds to the body of literature that seeks to illuminate attitudes that various ethnic and racial groups hold toward medical research.
Several studies have shown that often, among African-Americans, the issue comes down to a lack of trust—and with good reason.
Perhaps the most infamous experiment that involved African-Americans was the Tuskegee Experiment, when the U.S. Public Health Service conducted an experiment on 399 Black men—mostly illiterate sharecroppers in Alabama—who were in the late stages of syphilis between 1932 and 1972.
The men were never told of the potentially fatal disease they were suffering from or of its seriousness and were not offered treatments once they became available.
In 1996, then-Centers for Disease Control director David Satcher said he was “shocked” to learn that a government-sponsored study of two measles vaccines—initiated in 1989 during a major U.S. epidemic and conducted on nearly 1,500 mostly Black and Latino babies in Los Angeles—failed to inform parents that one of the vaccines was experimental.
“Similar clinical trials conducted in Africa and Haiti with the vaccine raised questions about its relationship to an increased death rate among female infants who received the more potent of two dosages being studied,” according to the Los Angeles Times.
Balls-Berry herself is a native of St. Louis, the city where in the 1950s and ‘60s a researcher claims that the U.S. Army conducted covert weapons testing by spraying chemical agents—mostly at Black children in the Pruitt Igoe public housing complex.
Balls-Berry said the new Mayo survey can be a source of optimism. The survey found, for instance, that a little over two-thirds of respondents understood the process for ethical review of research participation and reimbursement for adverse effects.
“Yet, a majority had generally favorable attitudes toward research,” a news release about the survey from the Mayo Clinic stated.
“The study we conducted shows that African-American women are more aware of our rights as it relates to research,” Balls-Berry said. “This means that we are taking into account the past hurts, unethical treatment of our communities, and putting forth an effort to question the work that is being done in our communities.”
She added that community-engaged and collaborative research efforts “open the doors for the community to have a more active role in the research process, not only as stakeholders, but also as part of the research or investigative team.”
“Being from St. Louis and being a woman of color who is also a scientist,” Balls-Berry said, “I want to make sure that my community is aware that we are at the table and that we have a voice to help ensure that equitable and ethical treatment occurs.”
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Could training in implicit bias be helpful at your institution?