U.S. to Admit Its Tuskegee Study Betrayal

WASHINGTON — The betrayal began long ago in an era when more people trusted government in a rustic byway far from the nation’s urban centers. Doctors used a group of ailing black men as guinea pigs, telling them that their syphilis was merely “bad blood.”

The so-called Tuskegee experiment has since become a national symbol of science run amok, a metaphor in the African American community for sinister motives in medical research, a wound that has yet to heal.

On Friday, the U.S. government will issue a rare, official apology for the medical study in rural Alabama that began in 1932 and lasted into the 1970s. Four of the eight survivors, ages 87 to 100, will fly to Washington, where President Clinton will express regrets for the official deception that took place in the name of science at grave personal cost.

Yet many believe that the legacy of Tuskegee rattles society even now, in ways that an apology by Clinton only begins to address. A quarter-century after the experiment was ended, distrust of the medical establishment lingers among minorities in ways that can affect not only medical science but their own health.

“It is timely. It is appropriate,” Stephen B. Thomas, director of the Institute for Minority Health Research at Emory University, said of the presidential apology for Tuskegee. “But it’s not enough.”

The survivors have mixed views about the White House’s entry into the controversy. Some are said to be pleased at the prospect of an apology from Clinton, others less so. Most had hoped that the president would fly to Alabama to deliver it.

Reactions range from “ ‘I don’t want to have anything to do with this anymore’ to ‘I get to go to the White House!’--and everything in between,” said Bill Jenkins, who runs the federal program that provides benefits to survivors of the study.

“We’re most grateful to the president for his apology,” declared study participant Herman Shaw, 94. But the survivors also believe that a monument would be a proper memorial, Shaw said.

A formal apology is only the latest turn in a saga that began 65 years ago when the U.S. Public Health Service began recruiting 399 black men in rural Alabama for a study on how syphilis progresses in black men. Although they were found to have syphilis, they were told only that they had “bad blood.” Study participants were promised free health care and burial insurance, even free food.

“There was a trust that is completely absent today,” Thomas said of the men, most of them illiterate sharecroppers, some of whom brought cornbread to their doctors. “That’s the irony of it all.”

Medical treatment for the men was purposely denied, even after the use of antibiotics to treat the disease became widespread in the 1940s.

Over the years, the men suffered effects of their untreated sickness, which can cause brain damage and paralysis. Some men infected their wives and the disease was passed on in turn to some of their children.

Remarkably, the ongoing experiment--including the fact that the sufferers were being used as unwitting guinea pigs--had been the subject of articles published in medical literature. But the public did not know about it. In the late 1960s, Jenkins, then a government statistician, began trying to expose the experiment but ran into an indifferent news media.

When the story finally did become news in 1972, it sparked a firestorm of protest. In a landmark debate, scientists, doctors and public officials argued about the ethical use of human beings in clinical experiments. Ultimately, the government issued new guidelines designed to ensure that human subjects of scientific experiments provide informed consent.

In 1974, participants won a judgment of about $9 million and the federal government has laid out at least that much in health payments to survivors, who today include 21 wives, 16 children and 2 grandchildren.

But the wound remains. What was “particularly unpardonable” about the Tuskegee study was that “it was done on the most vulnerable of vulnerable populations,” said Jay Katz, a professor of law, medicine and psychiatry at Yale Law School.

Beyond the direct trauma of participants and their families, the infamous study contributes to a deep suspicion of official medical studies among minorities, according to public health experts. African Americans have lower-than-average rates of participation in clinical studies of treatments for diseases ranging from cancer to HIV, for example, and are less likely than whites to donate organs.

A national survey conducted for Emory University’s Institute of Minority Health Research in February found that 36% of blacks believe it is “very likely” that they would be used as unwitting guinea pigs in medical research. That bleak view was shared by only 16% of respondents in a predominantly white group.

The deep distrust also plays into views expressed within the black community that the AIDS virus is manufactured--and the government is using it in a campaign of genocide against African Americans.

Beyond an apology, the White House plans Friday to announce some new initiatives in response to the debacle. Clinton will ask the Department of Health and Human Services to help researchers work more effectively within minority communities; announce some new, postgraduate fellowships in bioethics, especially for minority scholars, and direct federal agencies to put together better bioethics training materials.