Descendants of syphilis study subjects emerging from shadows
For 40 years starting in 1932, medical workers in the segregated South withheld treatment for unsuspecting men infected with a sexually transmitted disease simply so doctors could track the ravages of the horrid illness and dissect their bodies afterward.
Finally exposed in 1972, the study ended and the men sued, resulting in a
Except it didn't.
Relatives of the men still struggle with the stigma of being linked to the experiment, commonly known today as the "Tuskegee Syphilis Study." For years they have met privately to share their pain and honor the victims.
And, amazingly, that class-action lawsuit filed by the men in 1973 has outlived them all. The litigation continues to this day, with a federal court currently considering a request that will help determine the study's final legacy.
A key, unanswered question: What should be done with unclaimed settlement money that still sits in court-controlled accounts?
Lille
Once a sharecropper in the fields of rural eastern
"He was a wise man, very gentle. He was a disciplined man. Active in the church, loved his family and his extended family," said Head, of
Though he displayed no symptoms, Tyson also was born with congenital syphilis inherited from his mother, Head said. And that is how he became a participant in "The Tuskegee Study of Untreated Syphilis in the Negro Male."
Located about 40 miles east of the state capital of
In 1929, government doctors working in conjunction with a philanthropic fund began treating syphilis patients in the county with bismuth and mercury. Few people were cured, according to a summary from the
Three years later, the
Workers initially recruited 600 black men into a health program with the promise of free medical checks, free food, free transportation and burial insurance in a county where many blacks had never even seen a doctor. The men were tested and sorted into groups — 399 with syphilis and another 201 who were not infected.
The disease-free men were used as a control group. Health workers told syphilitic fathers, grandfathers, sons, brothers and uncles only that they had "bad blood."
None of the men was asked to consent to take part in a medical study. They also weren't told that "bad blood" actually was a euphemism for syphilis. Instead, doctors purposely hid the study's purpose from the men, subjecting them during the study's early months to painful spinal taps and blood tests.
Medical workers periodically provided men with pills and tonic that made them believe they were being treated, but they weren't. And doctors never provided them with penicillin after it became the standard treatment for syphilis in the mid-1940s.
The government published occasional reports on the study, including findings which showed the men with syphilis were dying at a faster rate than the uninfected. But it's doubtful any of the men — or their wives, girlfriends or other sexual partners — had any idea what had happened until an
The next morning, farmer and community leader
Pollard "came into my office and asked me if I had been reading in the newspaper about the men who were involved in the syphilis tests for 'bad blood,'" Gray wrote in a memoir.
Pollard was among the men in the study, and his visit with Gray led to the lawsuit and the multimillion-dollar settlement reached with the government on
Payments to men and their heirs differed based on whether men were infected or were in the control group, whether they were dead or alive. Living participants who had syphilis got
For decades, the study has been widely blamed for distrust among
Unaffected by the disease despite years of being in the study's syphilitic group, Tyson learned the true nature of the program only when the rest of the country found out, his daughter said. His wife and children all tested negative for syphilis, but Tyson was traumatized and feared the disease would show up somewhere in his family.
"After he found out about it he had to live with it. That could bring a person down if he wasn't strong. He was angry and he was upset," she said.
The lawsuit settled years before, Tyson died in 1988 at age 82 after an automobile accident. Today, the 72-year-old Head chairs Voices of our
Through the decades, their loved ones have been portrayed both as unwitting victims of a horrid experiment and as ignorant hicks who brought trouble on themselves with promiscuous behavior. Many descendants are still steamed over a 1997 movie called "
Descendants of the men began gathering a year or two after Clinton hosted five remaining test survivors in the
The last man involved in the syphilis study died in 2004 and this year, for the first time, relatives both allowed The Associated Press into their annual gathering and invited the public to a ceremony where they lit candles for the men.
This year's ceremony included about 110 descendants, friends, community members, a gospel choir from
"It was important that the people of
Retired public health nurse
The legal fallout from the
Settlement funds were used for decades to compensate study participants and more than 9,000 of their relatives. Court workers were unable to locate other descendants, and some never responded to letters from the clerk's office, which disbursed millions before the last payment was recorded in 2008.
Court officials won't say how much money is left, but documents indicate the balance is mostly interest earnings from money first paid by the government decades ago. Gray said he's heard it's less than
Some family members say the money should be used for additional funding for medical screenings for the men's families, and others want a long-discussed memorial at the old hospital where the study was run at
U.S. District Judge
The center is located in an old bank building owned by the county, and it's operated by a nonprofit headed by Gray and his daughter; the organization had net assets of more than
In his address to descendants during the community service, Gray made what amounted to a closing argument for using the money for the museum, which is open only during the summer because of funding shortages. Gray told descendants that the men of the study — the people he represented after that meeting with
A judge refused a similar request from Gray to provide the leftover money to the museum in 2004 after the government insisted it should get the money, records show.
But Pollard's 92-year-old daughter,
"He'd get mad about it," she recalled. "He said, 'They just took us up here and made guinea pigs of us.'"
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