The general distrust that African Americans have of clinical trials is rooted in their strained relationships with medical researchers, some of whom long ago broke the bond of trust by putting African-American patients at risk and failing to make full disclosures.
Even so, participation in clinical research is critical today because African Americans disparately suffer from some of the highest disease rates and respond differently to many popular medicines and treatments.
Researchers such as Dr. Claudia Baquet, associate professor of epidemiology and preventive medicine at the University of Maryland School of Medicine, and director of its National Bioethics Research Center, want to re-establish public trust to ensure African-American issues and challenges are addressed.
“The reason that this is so important is that we know that the public has a lack of trust in research and also in academic institutions,” said Baquet, one of the few African-American clinical researchers in the country.
“We know that African Americans and other under-served communities do not participate in medical research or clinical trials at the same rate of the general population. We feel that the lack of diversity in clinical trial participation contributes to health disparities. Plus, it affects our ability to develop new ways to prevent, diagnose or treat illness.”
The National Center of Minority Health Disparities, which is a part of the National Institute of Health, provided Baquet a $2.5 million dollar grant to establish a national bioethics research center at the University of Maryland School of Medicine in Baltimore and attempted to remove the stigma and mysteries associated with medical research within minority and under-served rural communities. The two-year grant is funded by the stimulus funding passed by the U.S. Congress last year.
Among the educational programs, Baquet established a partnership with the National Newspaper Publishers Association Foundation to encourage journalists to explore the issue of clinical trials and report on the impact of the issue in 2010. Five reporters applied and were selected as fellows, spending two days at the University of Maryland. They were: Joan Allen of the New York Daily Challenge; Linnie Frank Bailey of Black Voice News in Riverside, Calif.; Elaine Hegwood Bowen of the Chicago Crusader; Gordon Jackson of the Dallas Weekly; and Rhetta Peoples of the Florida Sun in Orlando. (NNPA National Correspondent Pharoh Martin, the writer of this story, also participated.)
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The reporters probed the ways African Americans could benefit from clinical trials and explored the fear that still prevails.
Baquet has also been setting up community educational programs on bio-ethics in Maryland called “mini-medical schools”. The community attends a four-week medical school. They are taught some core research methods involving ethics, its history of scandals and tragedies, the federal regulations that came about to protect participants and the application of those protections such as the importance of informed consent, the knowledge level of a person participating in a clinical trial.
Students also receive lessons on health care problems that affect their communities such as HIV/AIDS, hypertension, diabetes and the need for vaccines. The approach is multi-layered; in addition to educating the public researchers it also educates community physicians and nurses.
“There is still the persistent concern about research abuses and scandals that have happened in the past such as the Public Health Service’s study of untreated syphilis in Tuskegee, Ala., which recruited African-American men in Tuskegee who were promised treatment for syphilis,” Baquet said.
“Even after penicillin was identified as a cure, the treatment was withheld from them by the federal government. So there is still the persistent fear and concern about being treated like a guinea pig and not understanding that research has a role to play in improving the health of the community.”
Because of the historical concerns of events such as the Tuskegee experiments and others, lecturers go through intense efforts to explain how federal regulations resulted from such scandals to protect individuals who participate in clinical trials so that similar incidents are not repeated.