The Color of Research
According to research by Tufts School of Dental Medicine graduate Dr. Ralph V. Katz, the Tuskegee Experiment has little to do with African Americans' unwillingness to participate in biomedical studies.
In 1997, President Bill Clinton made a formal apology for the Tuskegee Syphilis Study, considered one of the worst breaches of medical ethics in U.S. history. Dr. Ralph V. Katz, D69, who had begun studying Tuskegee's social and scientific legacy three years earlier, was there. His subsequent work has exploded widely held myths about African Americans' unwillingness to participate in biomedical research studies. In fact, he says, very few people, regardless of race, are eager to sign up for clinical trials.
Known as the Tuskegee Experiment, the U.S. Public Health Service study, "Untreated Syphilis in the Negro Male," was originally intended to describe the course of the sexually transmitted bacterial disease, which, at the study's inception in 1932, had no known cure. The study recruited 399 infected black men from poor, rural Macon County in Alabama. They were never told they had syphilis, nor did they receive treatment after penicillin was found to cure the disease during World War II. Instead, the men went untreated until 1972, when a troubled researcher alerted the media to the ongoing abuse of human research subjects. Clinton's apology came 25 years later.
"To the surviving participants of the Tuskegee Experiment and to all our African-American citizens, I am sorry that your federal government orchestrated a study so clearly racist," Clinton said. "The legacy of the study at Tuskegee has reached far and deep in ways that hurt our progress and divide our nation. We need to do more to ensure that medical research practices are sound and ethical, and that researchers work more closely with communities."
Clinton's words signaled the revolution going on in American biomedical research at the time. For decades, scientists had exclusively used white males in their studies and extrapolated the results to women and other races. In 1993, Clinton signed into law the National Institutes of Health Revitalization Act, requiring NIH-supported researchers to include women and members of minority groups in clinical trials.
One part of the NIH was out in front of that legislation. The National Institute of Dental and Craniofacial Research (NIDCR), the smallest branch of the National Institutes of Health, in 1991 had established a network of regional research centers on minority oral health. The new Northeastern Minority Oral Health Research Center, a collaboration between the University of Connecticut School of Dental Medicine and the University of Medicine and Dentistry of New Jersey, focused on three major studies—baby bottle caries, the oral manifestation of pediatric AIDS and the epidemiology and genetics of oral cancer in African Americans. Katz, then a professor of epidemiology at the UConn dental school, was named the center's director.
Teasing out the truth
Katz first became interested in the Tuskegee Experiment in 1994, when he attended a bioethics conference at the University of Virginia on "The Tuskegee Legacy: Doing Bad in the Name of Good." Scientists attempted to address the real and well-documented problem of recruiting minorities for clinical trials. The conference rested on the assumption that blacks feared biomedical research because of the Tuskegee Experiment. "But not one of the academics gave a citation to back up what they were saying," Katz said.
So Katz, under the auspices of the Northeastern Minority Oral Health Research Center, launched the Tuskegee Legacy Project to "tease the truth out of this matter." Using a carefully crafted questionnaire, Katz and his colleagues attempted to answer two questions: Are blacks really more reluctant to participate in research than other groups, and, if so, why? Between March 1999 and November 2000, 353 blacks, 623 whites and 157 Hispanics completed the 60-item questionnaire via random telephone interviews. The respondents lived in Birmingham, Ala.; Tuskegee, Ala.; Hartford, Conn.; and San Antonio, Texas. The study attempted to quantify each group's "likelihood of participation" (LOP) in clinical trials and what Katz calls the "Guinea Pig Fear Factor" (GPFF), or each group's self-reported fear of biomedical research.
As Katz and his colleagues first reported in Dental Clinics of North America in January 2003, the groups differed only slightly in their likelihood of participating in research. Twenty percent of blacks versus 31 percent of whites—a statistically significant difference—said they would enroll in a study. But with Hispanics falling roughly in between, at 27 percent, the study found there was no overall difference among the three groups. As Katz pointed out to Tufts dental students during a lecture at the school last fall, "seventy percent of everybody says 'no thanks' " to biomedical research.
Katz and his colleagues also found that who conducts the research mattered to all groups, and slightly more to blacks. Unsurprisingly, all of them trusted their own physicians more than government or industry. While more than 50 percent of whites and more than 40 percent of blacks said they would participate in a study run by their personal physicians, very, very few (7 percent of whites and 4 percent of blacks) said they would enroll in a research study sponsored by the tobacco industry.
People from all three groups also based their decisions about participation on what the clinical trials required of them. While most respondents said they would exercise or answer questions in person or on the phone, very few were prepared to undergo major or minor surgery or take IV injections. Among the three groups, whites were least interested in exercising for science and blacks most leery of giving blood. (continued)
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Profile written by Jacqueline Mitchell, senior health sciences writer in Tufts' Office of Publications.
Homepage photo from Corbis. Katz photo by Joshua Paul.
This story ran online on Mar. 10, 2008. It originally appeared in the Winter 2008 edition of Tufts Dental Medicine.