Episode 28: The Tuskegee Syphilis Experiment

600 African American men were tricked into participating in a "study" that never intended to have their best interest in mind. 

Transcript

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Hey everybody, I'm Shannon and welcome to the They Hid What Podcast. On this podcast, I explore parts of history that have been kept hidden or swept under the rug. In this week's episode, I will be discussing the Tuskegee syphilis experiment. Let's get into it. The Tuskegee syphilis experiment was a forty-year study on untreated syphilis. It ran from 1932 to 1972 in Macon County, Alabama, and was officially called the quote Tuskegee Study of Untreated Syphilis in the Negro Male. This experiment was led by the U.S. Public Health Service, or USPHS, and the Center for Disease Control and Prevention, the CDC. And it was supposed to observe the natural history of untreated syphilis. So let's start with the core of the experiment. Syphilis. According to the Mayo Clinic, a quote: syphilis is an infection caused by bacteria. Most often it spreads through sexual contact. The disease starts as a sore that's often painless and typically appears on the genitals, rectum, or mouth. Syphilis spreads from person to person through direct contact with these sores. It also can be passed to a baby during pregnancy and childbirth, and sometimes through breastfeeding. After the infection happens, syphilis bacteria can stay in the body for many years without causing symptoms. But the infection can become active again. Without treatment, syphilis can damage the heart, brain, and other organs. It can become life-threatening. So, syphilis develops through four stages, the third of which, the latent stage, was the focus of the experiment. In the latent or hidden stage, the patient has no symptoms. The latent stage can last four years. The symptoms may never come back, but without treatment, the disease might lead to major health problems. At any stage, untreated syphilis can affect the brain, spinal cord, eyes, and other body parts. This can cause serious or life-threatening health problems. So, why and how did this experiment come to be? The U.S. experiment was actually inspired by a study done in Oslo. In 1928, the Oslo Study of Untreated syphilis was created by Dr. Caesar Beck. Convinced that available therapy, primarily mercury compounds that had been used since the 16th century was harmful, Dr. Beck withheld treatment from almost 2,000 syphilitic patients between 1890 and 1910. Like tuberculosis, which is caused by a bacteria that affects the lungs, syphilis had been one of the most feared infections. Around this time, German investigators made discoveries that changed the ways physicians could manage the disease. Therapy was transformed in 1908 when Sahachiro Hata and nobilist Paul Ehrlich discovered an arsenical compound, arsphenamine, which was highly toxic to the bacteria that causes syphilis. Arsphenamine was marketed as salvarsin in 1910. Back, being satisfied with its effectiveness, terminated the Oslo study. Enter Taliaferro Clark, the head of the USPHS. Inspired by the Oslo study, Clark's initial goal was to follow untreated syphilis in a group of specifically African American men for six months to one year and then follow up with a treatment phase. Clark was interested in determining whether syphilis had a different effect on African Americans than it did on Caucasians. The Oslo study only followed Caucasian men, so Clark would use this as a comparison to his own results. The experiment would take place at the Tuskegee Institute in Alabama. Clark resigned before the study was extended. Okay, so the excuse to study only black males was to weigh it against the Oslo results. But there seemed to be a lot of racially charged reasons to pick this group. First of all, Macon County, Alabama had a population of 27,000 people in 1932 at the beginning of the study, and 82% of that were black. Taliaferro Clark said, quote, the rather low intelligence of the Negro population, depressed economic conditions, and the common promiscuous sex relations not only contribute to the spread of syphilis, but the prevailing indifference with regards to treatment. These 600 participants were lured in under false pretenses. The men were told that the study would last for six months, they would receive free medical exams, rides to and from the clinics, meals on examination days, free treatment for minor ailments, and guarantees that provisions would be made after their deaths in terms of burial stipends paid to their survivors. They were also told that the study was to treat, quote, bad blood, which was a term used locally by people to describe a collection of illnesses, including syphilis. Bad blood was a leading cause of death within the Southern African American community. Most of these men were poor, so the prospect of free health care was tempting. 600 black men were enrolled and tested for syphilis. 399 had latent syphilis, and 201 were uninfected. Those affected were not told they had the disease, which put their partners and future children at risk of contracting it. These men were not told the full scope of the experiment, and this did not give them informed consent. This wasn't the only time the black community was used as medical test subjects. These experiments went back to when slaves were used to test for endurance against remedies for heat stroke and experimental gyneological surgeries without anesthesia. African Americans' graves were robbed to provide cadavers for dissection, a practice that continued along with other abuse after the American Civil War. Alexander Fleming had discovered and tested penicillin in 1928 and published his findings in 1929. However, penicillin wasn't readily available and it wasn't certain that it could absolutely treat syphilis. The 399 infected men were monitored and the 201 uninfected men were given placebos. Once public health service investigators had enrolled the 600 experiment members and obtained baseline measurements, they next decided to check for evidence of neurocephilis. Dr. Raymond Vandelaer wanted to perform a spinal tap to collect samples for testing, but realized that the men would probably refuse the procedure. He wrote to his teammates, quote, My idea is that details of the puncture techniques should be kept from them as far as possible. To entice the men to cooperate, he told them he would give them a special therapy, free spinal shots, tricking them into believing that spinal taps were therapeutic. The doctors would also scare the men into participating by claiming that this was their last chance for free treatment. The ultimate uninformed consent came in the form of an autopsy. One doctor, Oliver Wagner, wrote, quote, as I see it, we have no further interest in these patients until they die. Another surgeon, Dr. Cummings, said, quote, Since clinical observations are not considered final in the medical world, it's our desire to continue observation on the cases selected for the recent study, and if possible, to bring a percentage of these cases to autopsy so that pathological confirmation can be made of the disease processes. These doctors knew that the black community was against autopsies, and Dr. Wagner wrote, quote, if the colored population became aware that accepting free hospital care means a post-mortem, every Darkie will leave Macon County. Yeah. They're pretty gross. The experiment group published its first clinical data in 1934 and issued its first major report in 1936. There was something a little concerning about the 1936 report, though. Now keep in mind this is four years after the study began. The report of the Surgeon General included the statement: quote, plans for the continuation of this study are underway. During the last 12 months, success has been obtained in gaining permission for the performance of autopsies on 11 out of 15 individuals who died. This means that there were 15 men with latent stage 3 syphilis, whose doctors knew that they had the disease and chose not to treat it. These clinicians let these 15 men die, and the experiment only benefited off of the 11 of those that they could autopsy. It's just grosser and grosser. Then came World War II. 256 of the infected subjects registered for the draft and after the enlistment exam were diagnosed as having syphilis. They were ordered to obtain treatment for the syphilis before they could be taken into the armed services. PHS, that's the public health service, researchers prevented these men from getting treatment, thus depriving them of the chances for a cure. Vondeleur argued, quote, this study is of great importance with a scientific standpoint. It represents one of the last opportunities which the science of medicine will have to conduct an investigation of this kind. Dr. Murray Smith, one of the doctors taking part in the experiment, asked that these men be excluded from the list of draftees needing treatment in order to make it possible to continue this study on an effective basis. So here these men are, they're getting the opportunity to get treatment for the syphilis, and the doctors in the study are saying, no, no, no, no, no, you can't have those guys. We need them to study. Later, Dr. Smith, who's a local PHS representative involved in the experiment, wrote to Vondeleur to ask what should be done with patients who had tested negative for syphilis at the time of enrollment in the study and were being used as control subjects, but had later tested positive when registering for the draft. Smith wrote, quote, So far we're keeping the known positive patients from getting treatment. Is a control case of any value to the study if he has contracted syphilis? Shall we withhold treatment from the control case who has developed syphilis? Vondela replied that such cases, quote, have lost their value to the study. There is no reason why these patients should not be given appropriate treatment unless you hear from Dr. Austin V. Dibert, who is in direct charge of the study. I want you to keep in mind that the study was not secret, since reports and data were being published to the medical community throughout its duration. The U.S. government sponsored several public health programs to form rapid treatment centers to eradicate syphilis. When campaigns to eradicate venereal disease came to Macon County, the study researchers prevented their subjects from participating. Although some of the men in the experiment received arsenical or penicillin treatments elsewhere, for most of them this did not amount to adequate therapy. The first person against the study who was not involved in the PHS was Count Gibson, who was an advocate in medical civil rights and an associate professor at the Medical College of Virginia in Richmond. He expressed his ethical concerns to PHS's Sidney Olansky in 1955, which was 23 years after the study had started. Another person against the study was Irwin Schatz, a young Chicago doctor only four years out of medical school. In 1965, 32 years after the experiment began, Schatz read an article about the study in a medical journal and wrote a letter directly to the study's authors, confronting them with their unethical practice. His letter, read by Anne R. Jobs, one of the study's authors, was immediately ignored and filed away with a brief memo not to reply. Then came 1966. 29-year-old Peter Buxton, a venereal disease investigator from San Francisco, was hired by the PHS to interview patients with venereal diseases. After his interviews with those in the Tuskegee study, Buxton sent a letter to the National Director of the Division of Diseases, Dr. William Brown, expressing his concerns about the ethics and morality of the study. The CDC, which by this point controlled the study, reaffirmed the need to continue the study until completion, which meant until all subjects had died and been autopsied. The CDC had also received unwavering support for the continuation of the experiment both from local chapters of the National Medical Association, which represented the African American physicians, and the American Medical Association, allegedly. In November 1968, Buxton again wrote to Dr. Brown, who showed the letter to Dr. David Sensor, the current director of the CDC. Realizing they had a problem on their hands, Sensor and Brown convened a blue ribbon panel in February 1969 to discuss the experiment. A blue ribbon panel is a committee of individuals known for their expertise appointed to study, analyze, or investigate a specific issue. The CDC scientists presented an overview of the study and said they needed advice on deciding whether to terminate it. Dr. Brown noted that 83 men had shown evidence of syphilis at death, but he personally believed the disease was the primary cause in only seven of them. Dr. Lawton Smith emerged as the leading advocate for continuing the study. He stressed, quote, you will never have another study like this. Take advantage of it. And boasted that, quote, 20 years from now, when these patients are gone, we can show their pictures. Of 17 panelists from the Blue Ribbon Panel, only Dr. Gene Stollerman saw the men as patients and believed they had a right to be treated. Stollerman said, quote, you should treat each individual case as such, not treat as a group. The Blue Ribbon Panel dismissed this objection and continued to refer to the remaining men as a group of subjects rather than as individual patients. And so the study continued under numerous public health service supervisors until 1972, when Peter Buxton went to the press. On July 25, 1972, Gene Heller of the Associated Press broke the story that appeared in the Washington Star that there had been a 40-year non-therapeutic experiment called a study on the effects of untreated syphilis on black men in the rural South. The story appeared in the New York Times the following day. By the time of the 1972 publication, 74 of the subjects were still alive. 28 patients had died directly from syphilis. 100 died from complications related to syphilis. 40 of the patients' wives were infected with syphilis, and 19 children were born with congenital syphilis. In February and March 1973, Senator Edward Kennedy conducted congressional hearings into the study, which led to the passage of the National Research Act and, in turn, the establishment of institutional review boards, principles of informed consent, and protection of vulnerable populations. Legal proceedings against any physician that took part in the experiment were never initiated. Buxton and Hugh officials testified at these hearings. As a result of public outcry, the CDC and PHS appointed an ad hoc advisory panel to review the study. The Tuskegee Syphilis Study Ad hoc advisory panel to the Assistant Secretary for Health and Scientific Affairs was formed. It was made up of nine members that were not fully employed by the federal government and were selected by the Assistant Secretary for Health and Scientific Affairs from, quote, citizens representing medicine, law, religion, labor, education, health administrations, and public affairs. These panelists were paid$100 a day plus per diem and travel expenses. It's estimated that the annual cost for operating the committee was$74,000. There were 12 meetings in all from September 22nd, 1972 until March 28, 1973. In the end, the panel found that the men agreed to certain terms of experiment, such as examination and treatment. However, they were not informed of the study's actual purpose. The panel then determined that the study was medically unjustified and ordered its termination in October 1972, 40 years after its inception. In 1973, a class action lawsuit was filed on behalf of the participants and their families, and it settled in 1974 for$10 million. The settlement was divided into four categories. Living syphilitic group participants received$37,500. Heirs of deceased syphilitic group participants received$15,000. Living control group participants received$16,000. And heirs of deceased control group participants received$5,000. In 1996, the Tuskegee Syphilis Study Legacy Committee was formed to develop ideas that had arisen at the symposium led by Vanessa Northington Gamble, a physician and professor at University of Wisconsin. The committee published its final report on May 20, 1996, after a meeting from January 18th to 19th of that year. The committee had two goals. One, that 42nd U.S. President Bill Clinton should publicly apologize to the survivors and their community for past government wrongdoing related to the study due to the harm done to the Macon County community and Tuskegee University, and the fears of government and medical abuse the study created among African Americans. No apology had yet been issued. And second, the committee and relevant federal agencies should develop. Develop a strategy to redress the damages, specifically recommending the creation of a center at Tuskegee University for public education about the study, training programs for healthcare providers, and a center for the study of ethics and scientific research. A year later, on May 16, 1997, President Bill Clinton formally apologized and held a ceremony at the White House for surviving Tuskegee study participants. President Clinton said, quote, What was done cannot be undone, but we can end the silence. We can stop turning our heads away. We can look at you in the eye and finally say, on behalf of the American people, what the United States government did was shameful. And I am sorry. To our African American citizens, I am sorry that your federal government orchestrated a study so clearly racist. Five of the eight study survivors attended the White House ceremony. And this presidential apology led to the addressing of the second goal of the legacy committee. The federal government contributed to establishing the National Center for Bioethics in Research and Healthcare at Tuskegee, which officially opened in 1999 to explore issues that underlie research and medical care of African Americans and other underserved people. In 2001, a court compared the Kennedy Krieger Institute's lead-based paint abatement and repair and maintenance study to the Tuskegee experiments. In 2009, the Legacy Museum opened the Bioethics Center to honor the hundreds of participants of the Tuskegee study of untreated syphilis in the African-American mail. On January 3rd, 2019, a United States federal judge stated that Johns Hopkins University, Bristol Myers Squibb, and the Rockefeller Foundation must face a$1 billion lawsuit for their roles in a similar experiment affecting Guatemalans. And this was a syphilis study that ran from 1946 to 1948. In June 2022, the Milbank Memorial Fund, which funded the Tuskegee experiment, apologized to descendants of the study's victims for its role in the study. Guys, this is gross. It was all done openly, the lies were open, the manipulation was open, and only a handful of medical providers that read the reports actually spoke out. But I guess that is pretty substantial since they started speaking out during the late 1960s, which was when segregation was running rampant in America. So thankfully, mostly to Peter Buxton, people did speak out, a committee was formed, and the study was terminated. I don't think an apology from a president that had no hand in the matter really does much. But a lot of people did listen to that speech. So the story did get out there. And now we can all go and visit the center and learn even more ourselves. So check it out. I'll go check it out too, and come back next week to see what else has been hidden.