Q: What was the Study?
Government doctors from the United States Public Health Service (PHS) found approximately 400 African American men presumed to all have late-stage, and therefore not infectious, syphilis in and around Tuskegee in Macon County, Alabama beginning in 1932. After some initial treatment was given and then stopped because of lack of funds, the PHS provided aspirins and iron tonics implying through deception that these were to cure the men’s “bad blood.” What had started as a short treatment program became a study on the presumed “natural history” of late stage syphilis without treatment. PHS doctors also told nearly 200 controls—men without the disease—that they were being cared for with the same simple medications. In the end 624 men were in the Study (some were switched from the control to the syphilitic category). The only permission asked for was the right to autopsy the bodies after the men had died in exchange for payment for a decent burial.
Doctors and a nurse connected to the county health department, the venerable black educational institution Tuskegee Institute (now Tuskegee University) and the Tuskegee Veterans Administration Hospital (now the Central Alabama Veterans Health Care System—East Campus) provided assistance, did the x-rays, tests, and autopsies. Given the complexity of syphilis, many of the men survived their disease while others were felled by it. Those still infectious could have passed it on to wives or sexual partners, and through them to a fetus in utero.
The Study went on for forty years between 1932 and 1972, through the Depression, the second World War, the Cold War, into the civil rights era, as a changing number of administrators, doctors and nurses made it possible. It began at a time when there was “modern treatment” for syphilis with heavy metals (forms of mercury, arsenic and bismuth) and continued into what is usually considered the curative penicillin era of the post World War II years. It was finally ended in 1972 because of a public outcry over the failure to inform the men of their disease or to really treat them.
Q: Did the doctors inject the men with syphilis?
No. There is absolutely no evidence that the men were given or injected with the bacteria that causes syphilis. Syphilis is extremely difficult to transmit except through sexual contact, from a mother who is infectious to her child when she gives birth, or from a wet nurse to a baby or an infected child to a wet nurse. The photographs of the doctors drawing blood in the Study are sometimes misinterpreted as showing the men begin given the disease. This is not true. The photographs of the spinal taps in the Study (used to diagnosis neurosyphilis) are not pictures of the injection of the disease.
Q: What exactly is syphilis and its history?
Syphilis is a sexually transmitted disease that is passed from person to person from contact with sores that contain bacteria. Known by many names, including the great pox, lues venerea, orbad blood, it was dreaded for nearly half a millennium until the age of modern antibiotics. Debates linger over where syphilis, caused by the spiral-shaped treponema pallidum bacterium, first appeared. It is seen as the disease of the “other” brought to the New World by Columbus’s debauched men or, it is as strongly argued, taken to Europe in their bodies as a form of biological revenge. It first came ashore in Naples and then swept through country after county in the endless wars of the early 16th century causing “the syphilization of Europe” and acquiring its label as the disease left behind by marauding armies of strangers.
Over the next five centuries, the disease's "natural history" began to be mapped, although many medical debates ensued, and its transmission modes acknowledged. While the disease's virulent effects on human bodies changed over the centuries as disease and host accommodated to one another, by the 20th century knowledge of its phases was beginning to be understood even as debates raged over this complex disease. In its earliest and most contagious stage, syphilis is primarily passed through sexual contact. The bacterium can also enter a fetus or an infant at birth through its infected mother, or transfer from a syphilitic infant to a wet nurse. In adults, a few weeks after the spirochetes enter the body, a chancre or primary sore that is often not painful or even noticed appears, usually at the point of exposure on a penis, in a vagina or anus, or on lips. Infected fetuses can become stillborn, die as infants, or develop as children with blindness, deafness, abnormal nose and teeth formations, and neurological complications.
Several weeks to months later, either before or after the sore disappears, the disease enters its second stage. An eruption of lesions in the form of a rash occurs more generally across the body accompanied by weakness, headaches and severe pains. This too abates and with it the disease’s ability to be passed along to others. In the third stage, there is a latency period where no visual signs of the disease exist and the health of the individual does not seem in jeopardy. This may last anywhere from several years to decades to the rest of the life of the infected person.
Once this latency ends, however, in late latency the spirochetes can attack almost any organ or structure of the body. Syphilis was an ugly and loathsome disease made more so by the stigma of its primary transmission through sexual contact and its ability to emerge years later elsewhere in the body, causing a sufferer’s eyes to be blinded, a heart to stop, or a mind to be obliterated. Received medical wisdom when the Study began posited racial and sexual differences affected the disease’s path, with African Americans “expected” to have more cardiovascular complications while various neurological defects were supposed to be felt by whites. (The evidence in the end does not support these differences, however.)
Treatments began as soon as the disease emerged. Mercury as a cure for skin diseases was imported to Europe from Arabic physicians by the early 1500s and used extensively along with a host of other herbal, medicinal and biologic agents from guiac tree bark to sarsaparilla tonics. Its usage led to the adage, “A night with Venus, a lifetime with Mercury.” By the early 20th century, the spirochete had been identified, blood tests to determine its presence seemed to make certain diagnosis possible, and German research led to the focus on arsenic compounds as the “magic bullet” for the disease. By the l920s, months of treatment with various combinations of heavy metals—mercury, arsenicals, and bismuth—shaped what was seen as the “modern” treatment, especially for the early stages of the disease in adults, while a focus on fever therapies, particularly the introduction of malaria, was thought to aid in treatment of neurosyphilis.
By the time the study began in 1932, concern over treatment, debates over racial and gender differences, and the problematic accuracy of the blood tests filled medical journals and texts. It was becoming clear that not everyone died from the disease or even became seriously sickened by it. From a public health perspective, as Surgeon General Thomas Parran argued in 1938, “with one or two doses of an arsphenamine, we can render the patient promptly non-infectious, not cured.” The medical debates continued for the next decade until it was found that the new “miracle” drug penicillin could usually eradicate the disease in its earliest stages and perhaps even in latency if the organ damage had not yet been done. Even after penicillin, the study continued for another three decades until media attention and public outcries brought it to a close.
For more on syphilis, see www.cdc.gov/std/Syphilis/STDFact-Syphilis.htm.
Q: How does syphilis pass between people?
Syphilis is a sexually transmitted disease. It is not hereditary, that is it cannot be passed down from one generation to another. It has to be passed either through sexual contact (penis, vagina, anal, oral), or from an infected breast to a baby, from an infected baby to a wet nurse, or from an infected mother to her child at birth. It is therefore called a congenital, not a hereditary, disease.
Q: Did the PHS doctors think they were harming the men?
No. The PHS doctors thought they were helping because there was a medical debate over whether or not to treat those who were in the late latent stage of the disease. Many doctors believed the heavy metals treatment, although commonly used, might actually be harming not helping. Others thought that in an under-served area like rural Alabama the men would not likely to be treated after they passed out of the infectious stage.
By the time penicillin became available after World War II individuals in the Study might have been helped by it. Others might not have because the damage the disease did to their bodies could no longer be fixed by penicillin. Some of the PHS doctors also believed that doing this kind of research was necessary to understand the disease. It was also common at the time not to ask for formal written informed consent or to really explain to either subjects or patients exactly what was being done.
Q: What happened to the men's wives and children?
The PHS was supposed to only select men who could no longer pass the disease on to others because they were in the late latency stage. This may have not been true. When the Study ended there were 22 wives, 17 children, and 2 grandchildren who tested positive for syphilis. They received lifetime medical and then health benefits from the CDC (Centers for Disease Control). The last widow of one of the men in the Study died in 2009.
Q: Did everyone who had syphilis in the Study die from it?
No. The disease can affect differing organs of the body and can cause other illnesses and death. It used to be called “the great imitator” because its affects looked like numerous other diseases. Its damage to the body varies by individuals. Even with the available medical records, it is not clear exactly how many of the men had their lives shortened and their health compromised.
The reports and medical files reveal the damage: up until the last years of the Study those who were assumed to have syphilis did much worse than the controls. Life tables created in 1955 showed that at least for the younger men in the Study, aged 20-50, those assumed to have syphilis had a 17% shorter life expectancy. They became sicker and died sooner (the controls on average at 70 and the untreated and inadequately treated syphilitics at 65).
The initial news stories, based on the published articles, estimated at least 28 of the men and as many as 100 “died as a direct result of untreated syphilis” while other accounts circulate that make it appear as if all the men died from the disease. Given that the categories for how to report cause of death shifted over the years, the failure to have records on the men who passed away after the Study closed, and the differences between the autopsy reports and tissue data, we will never know this number exactly. From the medical records syphilis was the cause of death in at least 16 of the men.
Q: Did the men ever get treatment during the Study?
At the beginning, the PHS did provide some treatment then stopped it due to lack of funds. They then circulated names of the men in the Study to local physicians and tried to keep those eligible for the draft during World War II from the armed forces where they would have been treated. However, over the years as many of the men still living left Macon County, or the Study faded into the background, some of the men were able to get treatment elsewhere without the knowledge of the PHS. The evidence for some of their treatment is available in their medical records at the Southeast Regional National Archives in Morrow, Georgia. This treatment may or may not have changed the course of the illness in individual men. After the Study ended, any of the men still alive who agreed to government assistance were given penicillin. They then received life time medical and then health care paid for by the U.S. government.
Q: Was the Study a secret?
No. There were more than a dozen reports about the Study published in major medical journals and it was taught in medical schools. The term “volunteer” was used in several of the reports so it is possible to read them and assume that the men knew what they getting into rather than being deceived.
Q: How many men were involved?
We will never know exactly how many men were involved in the maltreatment that occurred. The PHS recruited nearly all of the men (81%) between 1932 and 1934. Others were found over the years, with the largest group of another approximately 18 added in 1938 and 1939. The published reports give conflicting numbers from a high of 634 to the usually quoted figure of 399 subjects and 201 controls, giving a total of 600 as a round and memorable number. The CDC’s final count in 1974, based on the medical records, is 427 with the disease and 185 controls, plus 12 controls switched to the syphilitic arm for a total of 624.
Q: Why only African American men?
There had been an earlier 20th century study done in Oslo, Norway that suggested lack of treatment in the later stages of syphilis would not be as harmful as once thought. Because the PHS and other physicians assumed the disease was different in African Americans, they believed a study in the United States of black men would provide differing data. Men were chosen, rather than women too, because it is easier to see a syphilitic lesion (sore) on a penis rather than inside a vagina. Women, if in the primary and secondary stages of the disease, could possibly pass it on to a fetus if they were pregnant and the PHS was concerned in this way about congenital syphilis.
Q: Why in and around Tuskegee, Alabama?
The Study grew out of syphilis control and treatment program run by the PHS and the Rosenwald Foundation that took place in six counties in six different southern states between 1929-1931. This was a demonstration project to show how surveillance and control of syphilis could be done in rural and mostly black counties. It ended when both the PHS and the Rosenwald Foundation ran out of funds during the height of the Depression. Given the high incidence of syphilis found during this project, and the availability of a new health department and a black-run hospital in Tuskegee, the PHS decided to try this new study beginning in 1932. The Study began as a treatment program that was then halted for lack of funds and became a research study to watch what happened when late latent syphilis went untreated.
Q: Why is it called the Tuskegee Study?
The formal title of the Study in its first medical publications was “Untreated Syphilis in the Male Negro.” Beginning in 1954, the publications after that called it “the Tuskegee Study of Untreated Syphilis” or “the Tuskegee Study.” It is not uncommon to name medical studies after the geographic location where they are done. When the newspaper story on the Study broke in 1972, the AP reporter Jean Heller called it “the Tuskegee Study” and the term “the Tuskegee Experiment” is often used as well.
Q: Did anyone try to stop it?
Yes. Beginning in the 1950s, the PHS doctors received letters from other physicians and an epidemiologist raising questions about the ethics of the Study. Beginning in the 1965, Peter Buxtun, then a disease investigator for the PHS, began to raise questions. He sent questions to the Centers for Disease Control (CDC) researchers who took over running the Study from the PHS. Finally he gave his information to an Associated Press (AP) reporter and the story went out into newspapers across the country in July 1972. Over the next year, there was a public outcry, a federal investigation, Senate hearings, and a lawsuit.
Q: How was Tuskegee University (then called Tuskegee Institute) involved?
The U.S. Surgeon General asked Tuskegee Institute to provide care for the men, to assist with the blood tests, x-rays, and to perform autopsies. The Study did have the endorsement of the various medical directors of the John A. Andrew Memorial Hospital (now closed) on the campus. Autopsies were also done at the Tuskegee Veterans Hospital, a federal facility, now called the Central Alabama Veterans Health Care System, Tuskegee-East Campus. Nurse Eunice Rivers Laurie, who worked as the liaison between the men and the PHS, was a Tuskegee Institute graduate who also did work at the Macon County Health Department and taught nursing at the Institute while she worked on the Study.
Q: Were the men from the famed World War II Army Air Corps called the “Tuskegee Airmen” involved?
No. Although the first government program to train black men for the Army Air Corps was sometimes called the “Tuskegee Experiment,” the men in the flight training had nothing to do with the Study. There is sometimes confusion on this because of the title of the flight program and because Laurence Fishburne stared in two HBO movies, one about the airmen and one about the Study.
Q: Did any of the doctors receive punishment for this?
No. Many of the doctors who started the Study had passed away or were senile by 1972. Those living were never charged with any criminal misconduct, although attorney Fred D. Gray sued several of them on behalf of his clients who were survivors or heirs of the men in the Study. The case was settled out of court.
Q: Why does the term “Tuskegee” get used to explain mistrust of doctors and a conspiratorial view of the government?
There are many reasons. The Study went on for forty years and is considered the longest running non-treatment study of its kind. The power of the government, not just doctors, made it possible. The men were not told they were in a study but thought they were being treated. Because the story of the Study came out in the media around the time of debates over informed consent and medical research, it is remembered. It is assumed falsely that this was done without anyone knowing about it and that the men were also infected by the government.
Those who know more about African American history also link it sometimes to the assumed racial politics of Booker T. Washington, Tuskegee Institute’s founding principal. The Study is also taught in bioethics courses, in on-line ethics training for researchers, and for those involved with institutional review boards that oversee medical research. It is a word that becomes a metaphor, or a symbol, for ways in which science and medicine ignores the needs of patients and for racism in research. The Study, however, is not the only example of the use of black men's and women's bodies for research.
Q: Was there ever a formal apology from the government?
Yes. In 1996 a group of health care professionals, historians, ethicists, Tuskegee University faculty, and community health activists formed a committee to ask the federal government and the President for an apology. A letter asking for the apology was sent to then President Bill Clinton. After political pressure from other community groups, attorney Fred D. Gray, the Black Congressional Caucus, and professionals within the CDC to honor the request, President Bill Clinton issued the apology on May 16, 1997 in the East Room of the White House with five of the remaining survivors, their families, and hundreds of others present. It was covered extensively in the media, broadcast on C-SPAN, and in a special link to an auditorium at Tuskegee University.
Q: How can I find out who was in the Study?
The names of the men who were in the Study and most of their medical records are available at the Southeast Regional National Archives in Morrow, Georgia. See www.archives.gov/southeast/index.html. These are open to the public. A list of their names is available in Examining Tuskegee.
Q: Where can I find out more information on the Study.
The major records about the Study are open to the public and are in the National Archives in College Park, Maryland and Morrow, Georgia. Records of the federal investigating committee are in the National Library of Medicine in Bethesda, Maryland. The Tuskegee University Archives hold records on their hospital and nursing programs. For more information, see both Tuskegee’s Truths and Examining Tuskegee, which also contain bibliographies that list other sources.
Q: Could a study like this happen again?
There are principles and practices in place to keep this kind of study from happening again in the United States. Researchers are held to higher standards of informed consent and institutional review boards usually approve studies before they can go forward. There has been concern that there are limits to how well informed consent works and that studies similar to this may be going on outside the United States.