In the Tuskegee (Ala.) University archives there are records dating to the 1930s detailing how black patients with syphilis were left untreated for more than four decades in Macon County, Ala., as part of a research program. But it’s a more recent event that hits home for the university’s archivist.
“A few years ago, an elderly man and granddaughter came to my office asking to talk to me,” says Dana Chandler, Tuskegee University archivist. “It turned out that the gentleman was a descendant of syphilis study subjects and he had something to show me.”
The grandfather pulled out a stack of uncashed checks and handed them to Chandler. The checks, all less than $30, one for as little as $14.68, were settlement payments for the man, an heir of a “deceased syphilitic” from the federal government. They were from the late 1990s and early 2000s.
“Why didn’t you cash the checks?” was a question Chandler posed. “The old man looked up at me and said, ‘Fourteen dollars? It was a slap in the face, as far as I’m concerned. I felt like it would have been a disservice to my ancestors to cash them.”
“It was a testament to the man and his family,” Chandler says. “Here’s a man who wasn’t running to the newspapers, shouting ‘look at the pittance they tried to pay me.’ He came to the university and simply said, ‘Show people what happened.’ It was an amazing act of conscience, I think. And it reminds us that it’s our duty at Tuskegee University to keep people remembering and thinking about biomedical ethics.”
It was 1932 when the United States Public Health Service and the Alabama State Health Department began what became known as the "Tuskegee Study of Untreated Syphilis in the Negro Male.”
Back then, treatments for syphilis were largely ineffective. But the study subjects were not even given those treatments that were available. The USPHS wanted to see what happened to men with untreated syphilis. There were placebos, but no treatment — even when an effective treatment was being used nationwide.
By 1947, penicillin was the accepted and effective treatment for syphilis. The men of Macon County went untreated for another 25 years. It was only after an Associated Press story brought the facts of the study to light and a public outcry ensued that a federal panel put an end to the program in 1972.
The study initially involved 600 black men — 399 with syphilis and 201 who did not have the disease. The study was conducted without the benefit of patients' informed consent. Researchers told the men they were being treated for "bad blood," a local term used to describe several ailments, including syphilis, anemia and fatigue. In exchange for taking part in the study, the men received free medical exams, free meals and burial insurance.
How did human beings deliberately choose not to treat their fellow human beings for decades, even when treatment was readily available and effective? Chandler says it's one of these questions that needs to be asked over and over again. The study, originally projected to last six months, was reviewed several times over the 40 years, and researchers knowingly decided to keep it going for science's sake. It’s hard to point to a strong rationale for needing the study once penicillin came along, Chandler says.
“You have to remember that this is nothing new,”he said. “Our government did it with mustard gas experiments during World War II. The Nazis did it. The Soviets did it. The Chinese did it. And something like this is going to happen again, if we don’t remember and talk about it.”
He says that is the role of Tuskegee University’s National Center for Bioethics in Research and Health Care which was established in 1999 on the heels of President Bill Clinton’s public apology on behalf of the USPHS.