The Tuskegee Syphilis Experiment

How would you feel if you signed up to be part of a medical test group, hoping to get better, only to find out that instead of trying to cure your illness, they simply wanted to observe you suffering from it? You would be pretty dismayed am sure.  You would also probably develop an extremely deep-seated distrust of medical professionals.  Today on The Secret Sits, we are going to discuss this exact situation, which took place during the Tuskegee Syphilis Experiment, I’m John Dodson, welcome to The Secret Sits.

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#TuskegeeSyphilisExperiment #Tuskegee #Syphilis #MaconCounty #Alabama #Sharecropping #PeterBuxton #TheTuskegeeInstitute #EuniceRivers #TheDrum #CDC #NAACP #BillClinton #LegacyMuseum #Discrimination #HumanResearch #Podcast

Transcript

How would you feel if you signed up to be part of a medical test group, hoping to get better, only to find out that instead of trying to cure your illness, they simply wanted to observe you suffering from it? You would be pretty dismayed am sure.  You would also probably develop an extremely deep-seated distrust of medical professionals.  Today on The Secret Sits, we are going to discuss this exact situation, which took place during the Tuskegee Syphilis Experiment, I’m John Dodson, welcome to The Secret Sits.

The U.S. Public Health Service Syphilis Study at Tuskegee began in the early 1930s as a response to the 1928, Oslo Study of Untreated Syphilis. It was determined that the Oslo study was a retrospective study, because many of this study’s patients’ histories had to be pieced together and they had already contracted syphilis and it had gone untreated for some time before the study began.  

The The U.S. Public Health Service Syphilis Study at Tuskegee, often referred to as simply, The Tuskegee Syphilis Experiment was to be a prospective study to compliment the Oslo study.  Researchers wanted to conduct a 6-month descriptive epidemiological study of the range of pathology associated with syphilis in the population of Macon County.  

Researchers enrolled a total of 600 extremely impoverished, African-American sharecroppers into the study.  And for our listeners who are not extremely versed in what sharecropping was like in the rural southern states of the U.S, I wanted to give a quick explanation. 

Sharecropping agreements were designed to be made fairly, as a form of tenant farming or share farming that has a variable rental payment, paid out of debt. There were three different types of contracts.

1.      Workers could rent plots of land from the owner for a certain sum and keep their whole crop.

2.      Workers work on the land and earn a fixed wage from the land owner but keep some of the crop.

3.      No money changes hands but the worker and land owner each keep a share of the crop. 

Of course, we are talking about the rural south in the 1920s and 30s, so these agreements where primarily between a white land owner and black sharecroppers.  Because of this, these agreements were rarely cordial and the practice was harmful to tenants with many cases of high interest rates, unpredictable harvests, and unscrupulous landlords and merchants often keeping tenant farm families severely indebted.

Because of these reasons, the researchers involved with the study deduced that they were not harming the men involved in the study, under the presumption that these men were unlikely to ever receive treatment. Of these 600 men, 399 had latent syphilis, with a control group of 201 men who were not infected. As an incentive for participation in the study, the men were promised free medical care.  This is the point where I need to quash a rumor, I have heard many times when I have heard people speak about this case, the rumor portion of the story is typically that the men involved in this study were GIVEN syphilis for the purposes of this study and that part is NOT true.  At this time in our past, syphilis was rampant and there was no approved treatment for the disease. So the men who entered into the study had already contracted syphilis, they just did not know they had the disease and where not told so either, despite the risk of infecting others, and the fact that the disease could lead to blindness, deafness, mental illness, heart disease, bone deterioration, the collapse of the central nervous system, and death. 

At that time, it was believed that the effects of syphilis depended on the race of those affected. Physicians believed that syphilis had a more pronounced effect on African-Americans’ cardiovascular systems as opposed to being on their central nervous systems as syphilis appeared in white patients. 

The men in this study were told that they were being treated for "bad blood", a colloquialism that described various conditions such as syphilis, anemia and fatigue. The collection of illnesses the term included was a leading cause of death within the southern African-American community. 

At the study’s beginning, major medical textbooks had recommended that all syphilis cases be treated, as the consequences were quite severe. But also at this time, syphilis was being treated with arsenic-based compounds which were mildly effective, but highly toxic.  The men were also supposed to be studied for 6 to 8 months and then begin treatment, but of course, that’s not what happened.  Men in the study were given placebos disguised at treatment, treated with ineffective methods, and diagnostic procedures, which were misrepresented as treatments for syphilis and/or "bad blood".

Throughout this study, participants remained in the dark about the study clinicians’ true purpose, which was to observe the natural course of untreated syphilis. Yes, you heard that right, the true purpose of this study was to observe and record how untreated syphilis patients progressed with this disease.  The study could have chosen to treat the syphilitic subjects after the 6 to 8 months of observation, or they could have tested a group with penicillin, which was being developed at this time and ends up ultimately being the best treatment for syphilis.

Instead, they continued the study without treating any participants; they withheld treatment and information about penicillin from the subjects. In addition, scientists prevented participants from accessing syphilis treatment programs available to other residents in the area. The researchers reasoned that the knowledge gained would benefit humankind; however, it was determined afterward that the doctors did harm their subjects by depriving them of appropriate treatment once it had been discovered. The study was characterized as "the longest non-therapeutic experiment on human beings in medical history." 

Because the study participants were not even told they had syphilis they went about their lives as normal, including their adult activities in their homes.  Because of this, the victims of the study included numerous men who died of syphilis, 40 women who contracted the disease through their husbands and 19 children born with congenital syphilis. 

To ensure that the men would show up for the possibly dangerous, extremely painful, diagnostic, and non-therapeutic spinal taps, doctors sent participants a misleading letter titled "Last Chance for Special Free Treatment".

The first clinical date to be released from this study emerged in 1934 and the first major report was published in 1936.  Now, this was before the discovery of penicillin as a safe and effective treatment for syphilis.  And let’s be clear, this study was no high-level MK Ultra secret, in fact reports and data sets were published to the medical community throughout the duration of the study.  But how, you ask, was the experiment’s true purpose kept from its participants?  Well, it is simple, they were all extremely illiterate. And the clinicians of this experiment knew this and were banking on the participant’s disadvantages. 

During the course of WWII, 256 of the infected men registered for the draft, where they were consequently diagnosed as having syphilis while they were at the military inductions center.  The military ordered the men to obtain treatment for their syphilis before they could be recruited.  After all it was a simple few rounds of penicillin and they would be all better, but the study researchers prevented these men from getting treatment, so they would not be cured and they could continue to be studied.

Later, Smith, a local PHS representative involved in the study, wrote 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: "So far, we are 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?" Vonderlehr replied that such cases "have lost their value to the study. There is no reason why these patients should not be given appropriate treatment unless you hear from Doctor Austin V. Deibert who is in direct charge of the study".

So to sum that up, if the man already in the study had syphilis, he has to remain untreated for that syphilis.  But if the man was part of the control group and did not have syphilis during the beginning of the study, but now has contracted syphilis, they can just be treated with penicillin and get better.

By 1947, penicillin had become standard therapy for syphilis. The U.S. government sponsored several public health programs to form "rapid treatment centers" to eradicate the disease. When campaigns to eradicate venereal disease came to Macon County, study researchers prevented their subjects from participating. Although some of the men in the study received arsenical or penicillin treatments elsewhere, for most of them this did not amount to "adequate therapy".

By the end of this study in 1972, only 74 of the test subjects were still alive. Of the original 399 men, 28 had died of syphilis, 100 died of syphilis related complications, 40 of their wives had been infected, and 19 of their children were born with congenital syphilis. 

The revelation in 1972 of study failures by whistleblower Peter Buxtun led to major changes in U.S. law and regulation concerning the protection of participants in clinical studies. Studies now require informed consent, communication of diagnosis and accurate reporting of test results. 

And all of these things are great, but where in this story does the crime come in?  Well lets get a little more into how this study was set up.  The venereal disease department of the US Public Health Service or PHS, formed the study group in 1932 in Washington DC under the head of the US Public Health Service, Taliaferro Clark.  The initial goal was to follow untreated syphilis in a group of African-American men for 6 months to one year and then follow that up with a treatment phase.  After the loss of some of their funding, the treatment portion was simply deemed too expensive.  

Mr. Clark is typically assigned the blame for this study, Thomas Parran jr. is equally if not more guilty for the non-treatment study in Macon County, Alabama. Oliver Wenger was the director of the Venereal Disease Clinic in Hot Springs, Arkansas.  Wenger and his team were responsible for developing the study’s procedures.  Raymond Vonderlehr was appointed the on-site director of the research program and he developed the policies that formed the long-term section of the project.  He was also the one who came up with the method for gaining consent for the subject’s spinal taps, used to look for signs of neurosyphilis, which he did by telling the men it was a special free treatment.  He also met with local black doctors and told them to deny treatment to any participants in the Tuskegee Study.  And then Dr. Vonderlehr retired in 1943, just shortly after penicillin was proven to cure syphilis.  But remember, this study was simply to observe black men with syphilis, not to help or cure them.

Several African-American health professionals and educators played a crucial role in the study.  The extent to which they knew about the full scope of the study is not completely clear.  Robert Moton was president of the Tuskegee Institute and Eugene Dibble was the head of the John A Andrew Memorial Hospital, both men lent their own personal endorsements and gave resources to aid in the study. 

African-American nurse Eunice Rivers, who studied at the Tuskegee Institute and worked in its hospital, was recruited at the beginning of the study to be the main point of contact with the participants.  Nurse Rivers played a pivotal role in the study, simply because the color of her skin made the participants trust her more than they would a white doctor or nurse.  They called it “Miss Rivers’ Lodge” and participants would receive free physical exams at Tuskegee University, free rides to and from the clinic, hot meals on examination days and free treatments for minor ailments.  Rivers also served the duty of convincing families to sign autopsy agreements in return for funeral benefits.  And when the study turned long-term, Rivers stayed on, in fact she was the only staff member for the study who worked with the participants for the entire 40 years.

Several men working for PHS expressed criticism of the study of the grounds that it was immoral and a poor scientific practice.  Another dissenter was a young doctor from Chicago only four years out of medical school.  In 1965, he had read an article about the study in a medical journal and wrote a letter directly to the study’s authors confronting them with a declaration of brazenly unethical practices.  After reading this letter, it was immediately ignored and filed away, they did not even bother to send a response.

In 1966, Peter Buxtun, a venereal-disease investigator in San Francisco, sent a letter to the national director of the Division of Venereal Diseases expressing his concerns about the ethics and morality of the extended U.S. Public Health Service Syphilis Study at Tuskegee. The CDC, which by then controlled the study, reaffirmed the need to continue the study until completion; and what they meant by completion was, until all subjects had died and been autopsied. 

The CDC received support for the continuation of the study from the National Medical Association, who represented African-American physicians, and the American Medical Association.

In 1968, a newsletter named The Drum was published by William Carter Jenkins.  Jenkins was an African-American statistician and worked for the Department of Health, Education and Welfare.  The Drum was devoted to ending racial discrimination in the Department of Health, Education and Welfare and it also called for an end to the Tuskegee Experiment. 

Peter Buxtun, finally went to the press in the early 70s and the Washington Star broke the story on July 25th, 1972.  It became front-page news in the New York Times the following day.  Senator Edward Kennedy called Congressional hearings, at which Buxtun and the Department of Health, Education and Welfare officials testified.  Because of the public outcry, the CDC and PHS appointed an ad hoc advisory panel to review the study.

The panel found that the men agreed to certain terms of the 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 1974 the NAACP filed a class action law suit on behalf of the study participants and their descendants.  This law suit resulted in a settlement from the US government in the amount of $10 million USD.  This amount would equal around $51.8 million USD today.  The settlement also agreed to provide free medical treatment to surviving participants and surviving family members who had become infected as a consequence of the fraudulent study.  The United States Congress then created a commission empowered to write regulations to deter such abuses from occurring in the future.

In 1974, Congress passed the National Research Act and created a commission to study and write regulations governing studies involving human participants. Within the United States Department of Health and Human Services, the Office for Human Research Protections was established to oversee clinical trials. Now studies require informed consent, communication of diagnosis and accurate reporting of test results. Institutional review boards, including laypeople, are established in scientific research groups and hospitals to review study protocols, protect patient interests, and ensure that participants are fully informed.

In 1994, the Tuskegee Syphilis Study Legacy Committee was formed.  In the committee’s final report in May of 1996, the committee had two goals:

1. 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 at the time. 
2. The Committee and relevant federal agencies should develop a strategy to readdress the damages, specifically recommending the creation of a center at Tuskegee University for public education about the study, "training programs for health care providers", and a center for the study of ethics in scientific research. 

One year later on May 16, 1997, United States President Bill Clinton formally apologized and held a ceremony at the White House for the surviving Tuskegee study participants.  At the ceremony Clinton said, “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 were able to attend the White House ceremony.  The five survivors who attended the White House ceremony in 1997 were Charlie Pollard, Herman Shaw, Carter Howard, Fred Simmons, and Frederick Moss. The remaining three survivors had family members attend the ceremony in their name. Sam Doner was represented by his daughter, Gwendolyn Cox; Ernest Hendon by his brother, North Hendon; and George Key by his grandson, Christopher Monroe.

The last man who was a participant in the study passed away in 2004.

Following Clinton’s apology, the federal government contributed to establishing the National Center for Bioethics in Research and Health Care at Tuskegee, which officially opened in 1999.  The purpose for this center is to explore issues that underlie research and medical care of African-American and other under-served people.

In 2009, the Legacy Museum opened in the Bioethics Center, intent on honoring the hundreds of participants of the Tuskegee Study of Untreated Syphilis in the African American Male.  

The conception which lay behind the U.S. Public Health Service Syphilis Study at Tuskegee in 1932, in which 100% of its participants were poor, rural African-American men with very limited access to health information, reflects the racial attitudes in the U.S. at that time. The clinicians who led the study just assumed that African-Americans were particularly susceptible to venereal diseases because of their race, and they assumed that the study's participants were not interested in receiving medical treatment. I mean, what kind of racist bullshit excuse is that?  

Taliaferro Clark, who was the original founder of the study said, "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."  When in reality, the promise of medical treatment, that the black community could not afford, except for emergencies, was what actually secured the men’s cooperation in the study.  They literally participated in this study to try and gain better health and they just ended up getting worse and continued to spread the infection throughout their community. 
 Finally, I would like to take a moment to recognize the long-lasting affects that this study, conducted in this way, has had on the black community in the United States of America.  And I am definitely not saying that this study was the only contributing factor, but it did damage the trust of the black community toward public health efforts in the US.  Situations, like this study, contribute to the reluctance of many black people, regardless of socioeconomic status, to seek our even routine preventative care.  A 1999 survey showed that 80% of African-American men believe the rumor that the men in the study had been injected with syphilis.  This also led to fears within the black community of abuse and exploitation by government officials and medical professionals.  And this study was conducted after others dating back to the antebellum period, when slaves had been used for unethical and harmful experiments including tests of endurance against remedies for heatstroke and experimental gynecological surgeries without anesthesia.  African American graves were routinely robbed to provide cadavers for dissection, and this practice continued long after the American Civil War.

Distrust of the government, in part formed through the study, contributed to persistent rumors during the 1980s in the black community that the government was responsible for the HIV/AIDS crisis by having deliberately introduced the virus to the black community as some kind of experiment. In February 1992 on ABC's Prime Time Live, journalist Jay Schadler interviewed Dr. Sidney Olansky, Public Health Services director of the study from 1950 to 1957. When asked about the lies that were told to the study subjects, Olansky said, "The fact that they were illiterate was helpful, too, because they couldn't read the newspapers. If they were not, as things moved on they might have been reading newspapers and seen what was going on." 

This case became a major turning point for improving relationships between many minority communities and the medical field and the US Government, but much more work needs to be done for every person in every community to feel seen and heard and to know that their individual dignity matters.  I’m John Dodson, thank you for joining us today on The Secret Sits.  Audio Eng. by Gabriel Dodson.  Org artwork provided by Tony Ley.