Article by Lucy
In 1932, the tragic government study in Tuskegee, Alabama began. Claimed to help the U.S. Public Health Service (PHS) gain an “understanding [of] the natural course of” (Alsan/Wanamaker) syphilis, the unethical and unscrupulous practices performed by white doctors left deep wounds in the Black community.
Mistrust, betrayal, hurt, anger
For 40 years, hundreds of poor, Black men in the rural town of Tuskegee were targeted by the U.S. PHS to participate in a study said to help researchers understand the path of the highly contagious sexual transmitted infection (STI): syphilis. The original sample size was 600 in 1932; “399 men with latent syphilis and a control group of 201 others who were free of the disease” (Nix)—the majority of these men were sharecroppers (tenant farmers who paid their rent to landowners by giving a portion of their harvest) and had never seen a doctor before.
Taken advantage of, many of the participants were persuaded by the researchers’ promises that they would receive free medical care, food, and burial accommodations. However, they were not informed of the true intentions and risks of the study. Participants were told that they were to be treated by doctors for bad blood, a “term commonly used in the area at the time to refer to a variety of ailments” (Nix). Researchers had purposely selected a location that was largely populated by Blacks, specifically uneducated Black men, to identify an “ideal” testing group that would, per the researchers’ opinions, benefit from the rare treatment opportunity.
Prevented from seeking outside medical attention, participants were heavily neglected and refused proper care, as “researchers provided no effective care as the men died, went blind or insane, or experienced other severe health problems due to their untreated syphilis” (Nix). The researchers justified this neglect by claiming they wanted to understand the entire progression of the disease. Obeying the knowledgeable and well-respected researchers on the study, “participants were subjected to blood draws, spinal taps, and, eventually, autopsies by the study’s primarily white medical staff” (Alsan/ Wanamaker) that were later deemed unnecessary.
In 1945, Penicillin was accepted as a treatment option of choice for syphilis. However, researchers refused to provide patients with Penicillin (and in general, failed to inform them of this accepted treatment); many patients and relatives of participants died from either the disease itself or complications stemming from related infections.
Taken from History.com
Tortured by the subterfuge, betrayed by the people they thought could help them, and indirectly murdered by illogical refusals to stop the study and provide treatment, survivors had only learned of the true intention of the unethical study much after it had officially ended.
Questions and concerns were raised about the study's ethics, although no one had bothered to request a review of the circumstances that the researchers performed under. It wasn’t until the mid-60s that a “PHS venereal disease investigator in San Francisco” (Nix) named Peter Buxton expressed concerns to government health officials. PSH officials agreed to perform an investigation of the ethicality of the study but later decided to discontinue and allow the study to follow all participants until the final passing. Undismayed, Buxton turned to a reporter friend who then passed the story to Jean Heller of the Associated Press. Heller then wrote an article on the details of the unethical study, exposing the inhumane treatment of black men in Tuskegee. Such information sparked national outrage and the overwhelming criticism of the study forced the disgusting “research” to stop.
It was only in 1974, two years after the study ended, that the National Research Law was signed and passed, finally requiring researchers to ensure full transparency with their participants and prevent further mendacious “studies”/ “experiments” to be performed. With the presence of the research law, and additional requirements necessary for experiments, unethical research studies were put to a halt. Stricter rules surrounding research experiments protected participants and limited the frequency of human experiments. Today, the process to receive approval for a study/experiment is extremely tedious and difficult but such enforcements are necessary for protection. Since the passing of the law, there have been no reported studies/experiments that have been deemed unethical in the U.S., however, there is always the possibility of secretive/hidden “experiments”.