If Not for the Public Outcry: The Tuskegee Syphilis Project/ Study

Today’s blog was written by Timmia King, undergraduate student at Howard University and spring intern in the Textual Processing Division at the National Archives at College Park, Maryland

The Tuskegee Syphilis Experiment  was conducted from the years 1932 to 1972, in Macon County, Alabama. It’s namesake is derived from the facts that the experiment was conducted in an area overwhelmingly populated with African Americans close to the Tuskegee Institute that in an earlier survey funded by the Rosenwald Fund were found to have a high prevalence of syphilis and it was also conducted with the cooperation of Tuskegee Institute. This study is often referred to as one of the dark periods in modern medical history. But why is that, did this experiment involve sanctioned torture, was it as bad as to the multiple instances where African American females were sterilized or does it mirror instances in which countless other experiments that were done to the bodies of African Americans in the name of Eugenics. Well quantifying suffering is not my job, but instead here is a summary of the study.

Outline of the Study 1 of 3 NAID 564684Outline of the Study 2 of 3 NAID 564684

Outline of the Study 3 of 3 NAID 564684

Outline of the Study (NAID 564684)

The study was conducted for forty years by the U.S. Public Health Services (PHS) and later the Center for Disease Control (CDC). The goal was to study the natural progression of syphilis in a group that had largely not received much or any treatment. In all there were over 600 participants in the study – close to 400 syphilitic and about 200 in the control group. All the participants were African American males over the age of 25. Racism played a big factor in why these studies went on for so long.  It was thought that syphilis affected African Americans very different than how it affected Caucasians. The experiment included blood tests, spinal taps, many x-rays, detailed medical histories and autopsies. When the study first began, it was assumed that African Americans would just participate in it blindly. Multiple males and females were tested. Those who tested positive and were not be used in the study were to be given treatment, but who knows how long that lasted or if the treatments given actually worked.

Gill to Cummings (NAID 564684)

Then they found if they offered incentives like meals, burial insurance, free medical treatments (for minor ailments), and free transportation people would be more likely to participate and keep on participating. They spent money on medical supplies to track the progression of the disease and also treatments such as mercury that they knew would not work. Even after more effective treatments were discovered they did not make those treatments available to the participants. In some cases the PHS even worked to deny those treatments. The PHS also worked with the military to stop those that were drafted from receiving effective treatment.

 

Wagner to Clark NAID 564684

Wagner to Clark (NAID 564684)

The study survived year after year of in-house review by the PHS and CDC which affirmed that it was important to continue the experiment to its conclusion as late as 1966. It survived the changes made to the medical field after the atrocities inflicted on human beings during World War II, and it survived scrutiny in medical journals. The study was finally terminated after a whistleblower leaked information, which Jean Heller used to published an article in the Washington Star. There was public outcry, which resulted in a congressional hearing. An ad hoc advisory committee put together by the PHS and CDC found that the study was unethical and unjustified. The study was called for immediate termination. The aftermath of the study produced the National Research Act of 1974, the Office of Human Research Protection to oversee experiments conducted on humans and the adherence to many regulations put in place such as informed consent.

But what about the victims? By the studies termination a number of the men had died from causes related to syphilis. Some of the wives and children of the men had also contracted syphilis. It may never be known the number of non-relatives that contracted the disease. In 1974, a $10 million settlement was reached between the NAACP representing the victims  (Pollard v. United States – Civ. A. No. 4126-N.) and the U.S. government. The Tuskegee Health Benefits Program was established to provide medical services and benefits as well as burial expenses to all participants, wives, widows and offspring.  But it affected more than just the people directly involved. Some African Americans became weary of going to doctors and that wariness continues to pass on as warnings whispered to each new generation.

But maybe I have already written too much, this is just a preview of all the information out there. There are many primary records found at multiple archives such as the National Archives (College Park and Atlanta) and the Tuskegee University Archives. I have specifically looked through Record Group 90, Records of the Public Health Service, General Records (National Archives Identifier 564684) at the National Archives at College Park, which is filled with correspondence between the the main players of the study within the USPHS and the Tuskegee Institute. These records talk about the beginning of the study – finding participates, establishing procedure, reporting results, and producing x-rays. College Park also holds records related to the aftermath of the study. The National Archives at Atlanta has the majority of records related to this topic. But their is a common thread in all these records. They usually show the people who took part in this experiment as just participants and later as victims. They are written by the people who conducted the experiment. In order to humanize these men it is important to also read books, watch documentaries, visit museums, and talk to people that have first hand and second hand knowledge. They might have been unjustly robbed of a long and healthy life or had their choices taken away from them regarding their medical care, but they did more in their lives – good and bad- than become the unknowing victims of a study.

Syphilis Study Survey (NAID 564684)

So I will close with teary eyes and a question. How long do you think this experiment would have continued, if not for the public outcry?  

 

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