The documentary, Deadly Deception, is based on the true story about the Tuskegee Study which was carried out in Macon County, Alabama over a forty year period. Sanctioned by the United States Public Health Service and the Tuskegee Institute, and paid for with taxpayer dollars, the study was to determine the effects of untreated syphilis on African-American men. The film takes us through the early formation of the study in 1932 until the end of the study in October of 1972. During the film, we discover why the study was done, how it was allowed to continue for forty years, and the impact it had on the subjects involved; as well as the lasting imprint it made on the American healthcare system.
The documentary begins with setting the backdrop for the development of the Tuskegee Study. In the 1920s as well as the early 1930s, the venereal disease syphilis was feared by most Americans of the day. “The disease started with genital ulcers, then progressed to a fever, general rash and joint and muscle pains, then weeks or months later were followed by large, painful and foul-smelling abscesses and sores, or pocks, all over the body.” (Frith, 2019). Syphilis affected nearly every part of the human body. The disease slowly progressed through three stages, sometimes lying dormant for many years. If left untreated the disease could progress to the final stage and leave the afflicted person with severe, permanent disabilities; including the inability to walk or dementia.
Being transmitted primarily through sexual contact, this added an even greater negative stigma to the people who contracted syphilis. Of upmost concern was that it was difficult to treat and no cure existed during this time. During this time, syphilis was considered a real public health emergency by the physicians of the day, and there was a sense of urgency to discover better treatment options or a possible cure. With this urgent need for effective treatment and/or a cure, mixed with the continued belief that African-Americans were inferior human beings, a study was initiated in the Jim Crow-era South.
“In 1932, the Public Health Service, working with the Tuskegee Institute, began a study to record the natural history of syphilis in hopes of justifying treatment programs for blacks. It was called the “Tuskegee Study of Untreated Syphilis in the Negro Male.’”(CDC.gov, n.d.). This study included 600 African-American males, 400 of whom were confirmed to have syphilis. The other 200 non-syphilitic males were considered a control group. The study was to initially last for 6 months, but continued for forty years.
From the beginning of the study, the men in the study were not told they had syphilis. Instead, they were offered “treatment” for “bad blood”. “The men were misled into the study with the promise of free health care, free transportation to and from hospitals, free hot lunches, and free treatment for their “bad blood,” which was the term used for sicknesses such as anemia, fatigue, and syphilis.” (Figueroa, 2017). In addition, very few men received any treatment for syphilis whatsoever. The primary purpose of this study was observational; but no one told that to these poor African-American sharecroppers.
As the study wore on, the drug penicillin was found to treat and cure syphilis diagnosed at any stage. “From 1943, it (penicillin) became the main treatment of syphilis.” (Tampa, Sarbu, Matei, Benea & Georgescu, 2014). However, this treatment was never offered to the men of the Tuskegee Study. These men continued to be observed and not informed in any way that they were afflicted with syphilis. This was unfortunate because many of these men had wives and children. Some of these relatives contracted syphilis; the wives through sexual contact from their husbands and the children congenitally from their mothers.
Something else happened in the mid-1940’s that was noteworthy and should have brought about an end to this inhumane study. The Nuremberg Doctor’s trial was held in 1947, and as a result of this trial the Nuremberg Code was created. “This landmark document, developed in response to the horrors of human experimentation done by Nazi physicians and investigators, focused crucial attention on the fundamental rights of research participants and on the responsibilities of investigators.” (Ghooi, 2011). The whole world was shocked and horrified by the tortuous experiments these Nazi doctors performed upon their helpless patients. Despite this revelation and the subsequent release of the Nuremberg Code, the Tuskegee Study was allowed to continue with the oversight of American physicians.
The documentary covers all of these topics well, going into more depth about the prevailing attitudes whites had towards African-Americans during this time. Jim Crow laws were being passed and segregation was the rule, not the exception. In addition to these societal norms of the time, whites considered African-Americans less smart, less able, and less worthy than themselves. Therefore it was seemingly easy for these white doctors to hold a “paternalistic view of the men of the Tuskegee Study.” (Nova, 1993). This viewpoint was dangerous because it made the men out to be incapable of making decisions regarding their own health, so why bother giving them crucial information pertaining to their health?
These doctors and researchers really looked at the men in the Tuskegee Study as guinea pigs. There were many articles published during this time referencing the Tuskegee Study, without the least bit of consideration for ethics or morals. The researchers and physicians continued to conduct painful tests, such as spinal taps, to study the progression of untreated syphilis in these men. Yet, not only did they withhold treatment from these men and their families, in some cases, the nurses involved actually prevented these men from getting outside treatment.
It was not until the end of the 1960’s when the Centers for Disease Control, (CDC), took control of the study that questions were raised about the ethics of the study. Many new doctors were being assigned to monitor the Tuskegee Study and they had some valid concerns that the Tuskegee subjects were not getting treatment. With the Civil Rights movement well under way and the ending of the Jim Crow era, it was finally time for the Tuskegee Study to be recognized for what it really was; a negligent medical experiment and a gross miscarriage of justice.
The Tuskegee Study ended in 1972, after being exposed by the press. “By this time only 74 of the test subjects were still alive. 128 patients had died of syphilis or its complications, 40 of their wives had been infected, and 19 of their children had acquired congenital syphilis.” (McVean, 2019).
Overall this documentary provides a unique insight into a dark period of time in not just American society, but American healthcare. The blatant disregard shown to these poor African-American men and their families is the epitome of the racism that permeated this time period. The realization that these uneducated, poor men placed their faith and trust in their own government only to be treated as a cold, scientific experiment is nearly beyond belief. But, to a nurse like myself, the realization that these innocent, sick men placed their health-indeed their very lives-into the hands of highly skilled medical providers and received no treatment, no diagnosis, and no compassion whatsoever is shameful.