Tuskegee victims wait for an apology It would change nothing, but might heal some hurts

THE BALTIMORE SUN

TUSKEGEE, Ala. -- Herman Shaw is awaiting an apology from his president. Ninety-four years old, he is a tall, dignified Alabamian who trusts his government still -- even though he spent 40 years at the center of one of this country's most notorious episodes, the Tuskegee Study.

Now, 65 years after public health officials began tracking syphilis in poor, black men -- never telling them they had the disease and withholding a cure when it was discovered -- President Clinton plans to say the government is sorry.

Begun in a time when syphilis was as dreaded as AIDS is today, the Tuskegee experiment stands for science gone horribly wrong.

It became "a metaphor for ill will and bad treatment," for exploiting differences in race and class, says James H. Jones, a University of Houston history professor.

For some, an official government apology is a worthless gesture.

But many -- including the survivors, the families of the dead, medical ethicists, doctors and historians -- believe contrition can help wounds heal.

"An apology is important," Jones says, "so people can begin to work through their distrust."

Bitterness lingers about Tuskegee. Shaw, who was used as a laboratory specimen without his knowledge, betrays none of it.

If the president offers an apology, Shaw says, "Personally, I would thank him very kindly for his courage."

Shaw dresses in a blue, three-piece suit with a blue striped tie for a visit to his lawyer, Fred D. Gray. Shaw drives his 1989 Buick Park Avenue to the appointment, with a nursing aide riding in the passenger seat.

All his life, he worked -- 44 years in the textile mill in Tallassee, Ala., at the same time he was raising cotton and corn for sale.

He was married for 62 years, sent two children through college and still tends to a few crops at the home he's lived in since 1922.

And for decades, with hundreds of other men like him, Shaw dutifully arrived to have his blood tested by government doctors and to take the tonics and capsules they handed him, unaware they were placebos.

The U.S. Public Health Service doctors were studying how untreated syphilis worked on the men's joints, eyes, hearts and brains. More than 600 men were recruited -- 399 with syphilis, the rest a control group that did not have the disease.

The scientists recorded autopsy results in the volumes they compiled on the suffering of the men of Tuskegee.

In return, burials were paid for. In 1958, the government offered a reward: Each participant got a certificate and $1 for each year they had spent in the program.

"Yes, $25," Shaw says.

$10 million settlement

A class-action lawsuit settled in 1974 won $10 million for the participants and their heirs. But Gray, the lawyer who filed that case, says that settlements generally include language allowing the parties to deny any responsibility.

The time is overdue, Gray says, for Washington to declare it is sorry to the eight surviving Tuskegee participants, ages 87 to 100, and to the memory of those who died.

But what is the value of an apology, mere words, after all the Tuskegee participants suffered?

"Recognition, mostly," says Shaw. He wants authorities to acknowledge what they did to him.

Even if it comes from a president who had nothing to do with the program, who wasn't even alive when it began?

"We recognize the fact," says Gray, "that an apology doesn't undo the damage that has been done."

But "when you occupy a position of responsibility -- and the president has awesome responsibility -- you assume responsibility not only for what goes on in your administration, but it's an opportunity for correcting wrongs that occurred in the past."

"I would love to see an apology," says Albert Julkes Jr., whose father died in 1995. "My only regret is that my father is not alive to see it.

"All of these men deserve some type of appreciation. They contributed, at the risk of their lives."

Important for healing

Dr. Ruth Faden, a medical ethicist and professor at the Johns Hopkins School of Hygiene and Public Health, believes an apology is "extraordinarily important."

"I wouldn't be surprised to hear someone say, 'Big deal. Words are cheap.' But for some people, there is something powerfully healing about someone acknowledging they were wrong."

Faden chaired a federal advisory committee that examined the ethics of secret Cold War-era radiation experiments. The group's findings resulted in a 1995 apology from President Clinton.

"Governments don't like to apologize," Faden says. "They go to great lengths to use other language. There are large issues of national pride and national conduct at stake when you talk about a public apology."

Official apologies are rare. "When the president says, 'We're sorry,' there can be no clearer statement that what was done to you will not be done again."

Jones, the history professor, agrees that an apology should be, "if done right, an act of contrition. It's only through contrition that we atone for our mistakes."

"It's about justice," Jones says. "It's about giving these people whatever peace comes from that apology. It's about giving them their due. They deserve this."

Good intentions

The Tuskegee experiment was never a secret. On the shelves of the Tuskegee University archives sit four dusty boxes holding reprints of medical journal articles from the 1930s, '40s and '50s that make dry note of an Alabama study of untreated syphilis in "Negro males."

One researcher say the study "promises to be the most illuminating investigation of its type yet undertaken."

It took newspaper articles in 1972 to bring the experiment to public attention.

The outcry, the expression of revulsion, was immediate.

Faden calls it "an absolute turning point in the history of research ethics. It was truly a watershed event. The response to Tuskegee was overwhelming."

Congress held hearings, where the Tuskegee study was compared to the grotesque work of Nazi doctors.

New laws tightened government rules on human experimentation -- rules that began with what should have been obvious: The participants should be asked if they want to be part of a medical experiment and should be fully informed before allowed to join.

A chance for health care

Herman Shaw says he never had that chance. He was already married and a father in 1932 when he read a flier advertising a meeting on medical care set at a church near his home.

The Great Depression was at its worst. "Hoover's Panic" is Shaw's name for that time. Americans were struggling, and the farmers of the rural South were among those suffering most.

"We could not get health care," Shaw says. "We were poor. We could not get anybody in the city to help us in the country."

So the church was full and men filled the yard outside on the day that a U.S. Public Health Service nurse, Eunice Rivers, and other medical officials explained a new health-care program.

"They informed us we could get free medicine," says Shaw, who was found to have syphilis, but was never informed. "So we took advantage of it."

All the men had to do was show up for blood tests every month and see a doctor "who would come down from the North" every three months. Once a year, the men received complete physicals and were given a free meal. "We registered that day," Shaw says.

"They were susceptible to kindness," says Dr. Stephen B.

Thomas, director of the Institute for Minority Health Research at Emory University in Atlanta.

"These are men of great grace," he says. "They grew up in an era when that kind of grace kept you alive. These are men who knew the sons of slaves. It is their humble humanity that makes an apology worth the president's time."

Slow, cruel killer

When the study began, syphilis had no cure. The disease took decades to kill and left some victims insane or blind.

The original goal of the study was to watch how black men were affected by the disease, a study that was supposed to build on an earlier study of white men in Norway.

But doctors today say the data could have been compiled in just a few years, not 40. And the experiment should have ended in the 1940s, when penicillin was discovered to be a cure.

None of the Tuskegee Study participants, however, knew any of that. "When we'd go to these meetings," Shaw says of his medical appointments, "they'd take our blood and then they'd give us tablets or capsules."

Albert Julkes' father told his son a more sinister story:

"He always told me that they were taken from the fields to the health department, where they were told they were being inoculated against smallpox and measles. Instead, they were being injected with syphilis. That's what my father always told me."

Skepticism and suspicion

Tuskegee continues to haunt America.

Today, Americans are more skeptical about medicine. And blacks are inordinately suspicious of government health programs, says Dr. Thomas, of Emory.

"There is a reason for the mistrust, and the mistrust is rooted in Tuskegee," Thomas says. "It's the personification of all the abuse that has taken place. The gap in health care between blacks and whites is wide and growing."

Gray, the lawyer, says an official apology would go far to restoring trust. Gray would like to see something more for his clients -- some kind of memorial, perhaps a museum, to be sure that the Tuskegee story is never forgotten.

And he would like the apology to be made in Tuskegee.

"For the president of the United States to have the courage to come back to the site where these men were recruited," he says, "that would really mean something."

Pub Date: 4/12/97

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