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Akron Univ. School of Law

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Wednesday, March 19, 2008

Tuskgee Still Has Health Impact . . . .

The Associated Press has a story discussing two recent studies conducted by Johns Hopkins University examining the long-term impacts of the Tuskegee Syphilis Study on health care for African Americans.  The AP reports,

The infamous Tuskegee Syphilis Study, a government experiment that charted the effects of the untreated disease on mostly poor and uneducated Black men, was conducted for 40 years before it was exposed and ended in 1972 amid widespread condemnation.  A number of participants in the study died of the disease, which the men spread to women and to children at birth. But does it still take a toll on the health of new generations of Blacks? Even the experts, apparently, can't agree.

Two separate studies by Johns Hopkins University physicians took opposing sides on whether the Tuskegee experiment remains a significant factor in turning Blacks away from clinical trials at a greater rate than Whites. And both tended to contradict an extensive 2005 National Institutes of Health computer survey that found, in fact, Blacks are no different than Whites in the rate at which they take part in clinical trials when offered the chance.

Despite the different findings, researchers involved in the studies, along with others who work on minority medical issues, said more needs to be done to make sure Blacks have proper access to clinical trials as well as medical care.

In research reported earlier this year, Johns Hopkins University doctors found that Blacks were more reluctant than Whites to take part in medical studies because they fear being improperly used as guinea pigs. Their lack of participation, the authors said, inhibits efforts to develop treatments for diseases that Blacks suffer from in disproportionately large numbers.  “So long as the legacy of Tuskegee persists, African-Americans will be left out of important findings about the latest treatments for diseases,” said senior study author Dr. Neil Powe, a professor at Johns Hopkins School of Medicine.  “There is enormous irony that without African-American subject participation in clinical trials, we are not going to have tested the best therapies we need to treat African-Americans,” Powe said.

But less than three years earlier, researchers from the Johns Hopkins Bloomberg School of Public Health reached a different conclusion about the Tuskegee experiment. Their study published in the July 2005 issue of the Journal of the National Medical Association found that few Blacks had heard of the Tuskegee experiment and fewer knew accurate facts. They agree with Powe that Blacks are significantly more likely than Whites to be mistrustful of medical care and clinical trials. But they don't view the experiment conducted by the U.S. Public Health Service in Macon County, Ala., to be a major reason. Dr. Thomas LaVeist, co-author and director of the Bloomberg School's Center for Health Disparities Solutions, said the Tuskegee study plays only a modest role in producing distrust.

Instead, LaVeist said emphasis should be placed on contemporary factors that may make Blacks less likely to want to participate: They’re more likely to go to lower quality health care facilities, they have more difficulty getting appointments and they experience longer waiting times. All supporting the notion that Blacks aren’t treated the same, he said. . . . .

The study by Powe and other Johns Hopkins physicians, released in the journal Medicine online Jan. 14, involved a random survey of 717 outpatients at 13 cardiology and general medicine clinics in Maryland from April to October 2002. Thirty-six percent of participants were Black, the rest White.

Each participant was asked to enroll in a mock trial to test a heart disease pill and were given an in-depth explanation of risks and benefits by a physician, either Black or White. Only 27 percent of Blacks were willing to participate, as opposed to 39 percent of Whites. Seventy-two percent of Blacks said doctors would use them guinea pigs without their consent, versus 49 percent of Whites.

“The thing we were surprised about was that African-Americans were two times or 200 percent more likely to perceive a chance of harm from participating in medical research,” Powe said. “That perception of harm accounted for why they were less willing to participate in a trial.”

Powe said the study provided several possible remedies, including an increase in the number of minority physicians involved in clinical research studies. Some 12 percent of the U.S. population is Black, but only 4 percent are physicians.

He said health care providers need to do a better job at building trust with patients.  “We need to take time to communicate and explain what the risk and benefits are to participating in research and dispel myths that unrealistic harms could result,” he said.

Dr. Mona Fouad, director of the University of Alabama at Birmingham’s Minority Health and Research Center, said a number of reasons have been reported for low participation by Blacks in clinical research. These include economic barriers, time off to participate, negative experiences in the medical system and the complexity of required procedures such as consent forms.  She said the latest Johns Hopkins study is important in underlining the need to reach out and develop culturally competent recruitment strategies.

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