Study Debunks That Blacks Are Wary of Medical Research

President Bill Clinton and Vice President Al Gore appear in 1997 with Herman Shaw, who was part of the Tuskegee Syphilis Study. The 40-year study, in which treatment for advanced syphilis was withheld from nearly 400 black men, has been used to reinforce the truism that blacks are reluctant to volunteer for medical experiments.
President Bill Clinton and Vice President Al Gore appear in 1997 with Herman Shaw, who was part of the Tuskegee Syphilis Study. The 40-year study, in which treatment for advanced syphilis was withheld from nearly 400 black men, has been used to reinforce the truism that blacks are reluctant to volunteer for medical experiments. (By Doug Mills -- Associated Press)

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By Rick Weiss
Washington Post Staff Writer
Tuesday, December 6, 2005

It is a truism that black people do not trust the medical establishment and are reluctant to volunteer for experiments.

And why should they volunteer, the story goes, given the widely known history of Alabama's Tuskegee Institute, where for decades doctors withheld medical treatment from several hundred black men with advanced syphilis as part of a sordid federal study?

"There's just this wide assumption that gets repeated all the time," said David Wendler, a bioethicist who studies race issues at the National Institutes of Health. "We wanted to see what the data really show."

Those data, released yesterday, shoot down the myth.

Given the chance to participate, minorities volunteer at least as often as whites do, according to the first study to measure response rates directly. And although minorities are indeed underrepresented in research, the reason appears to be that doctors and scientists reach out to them less.

"You have to stop blaming the victim here," said NIH bioethicist Ezekiel Emanuel, who with Wendler led the new research, published in yesterday's online edition of the journal PLoS Medicine. "When you see it's about access -- not bringing enough minorities in -- that means the responsibility is on us, the researchers and research institutions."

Experts in minority medicine said they were gratified to see objective evidence supporting what they have long believed to be true.

"African Americans are quite willing to participate once barriers are removed," said William B. Lawson, chairman of psychiatry at Howard University. "Access, more than attitude, is the major factor."

Several studies have documented that minorities, and in particular blacks, distrust the medical establishment.

A survey released in February, for example, found that about half of blacks believe that a cure for AIDS exists but is being withheld from the poor. One in six said they believe the government created AIDS as a means of controlling black population growth.

Such attitudes have long been attributed, at least in part, to lingering resentment over the experiments at Tuskegee. For 40 years until 1972, the U.S. Public Health Service supported that study of nearly 400 black men, most of them illiterate. None were told that treatment for their disease was being withheld, even as they became blind and fatally brain-damaged.

President Bill Clinton, offering an apology to the eight surviving subjects in 1997, called the experiment "clearly racist."


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