The Tuskegee Study, which is also known as the Tuskegee Syphilis study was an infamous, unethical, and malicious clinical study conducted between 1932 and 1972 by the US Public Health Service. The purpose of the study was to observe the natural progression of untreated syphilis in rural African-American men in Alabama, under the guise of receiving free health care from the United States government. The purpose of the study was to understand the disease’s natural history through time and determine proper treatment dosage for specific people.
How the experiment started?
The experiment started in 1932. The word was out in Macon Country, Alabama, that there was a new health program offered specifically to African-Americans for free. The experiment was advertised as “treatment for bad blood”.
The experiment offered free medical check and treatment to participants, as well as free food, and free burial insurance. But the free benefits cloaked the real intention of the program, which was named “The Tuskegee Study of Untreated Syphilis in the Negro Male”.
The experiment was a clandestine program, but not by the CIA. The study was led by the US Public Health Service, and the objective was to monitor and study how dangerous venereal infection progressed among patients who did not receive any treatment.
There were 622 participants, 431 of which had syphilis, and 169 who did not carry the infection. Those with syphilis received placebos, which included supplements and medicine like aspirin. Over time, many patients developed severe health complications. Some of them died, and then researchers performed autopsy to acquire more information.
Even when penicillin was endorsed as a medicine for syphilis in 1947, the notorious research did not stop. The men were told that the study will last only six months, but it lasted 40 years. After funding for the treatment was lost, the study continued without informing the men that they would never be treated. None of them men infected with syphilis were told that they had the disease, and none was treated with penicillin.
The study was cited as “arguably the most infamous biomedical research study in US history”. It led to the 1979 Belmont Report and the establishment of the Office for Human Research Protections.
How was the study terminated?
The first dissent against the study was Irwin Schatz. He was a young Chicago doctor, only four years out of medical school. He read an article about the study in a medical journal in 1965, and wrote a letter to the study’s authors, confronting them with a declaration of brazen unethical practice. The letter was ignored and filed away with a brief memo that no reply would be sent.
In 1966, Peter Buxtum, PHS venereal-disease investigator in San Francisco, sent a letter to the national director of the division of Venereal Disease, informing him and expressing his concerns about the ethics and morality of the study. The Center for Disease Control and Prevention, which at the time controlled the study, reaffirmed the need to continue the study until completion, which meant until all subjects had died and been autopsied. The CDC received support from local chapters of the National Medical Association (repressing the African-American physicians) and the American Medical Association.
In 1968, William Carter Jenkins, who was an African-American statistician in the PHS, founded and edited the Drum. This was a newsletter devoted to ending racial discrimination in the Department of Health, Education, and Welfare (HEW). He called for an end of the study, but he did not succeed. It is still not clear who read his work.
Peter Buxtum, the man who sent a letter in 1966, went to the press in the early 1970s. Washington Star was the first newspaper to broke the story on July 26, 1972. The following day, it became a front-page story by the New York Times. Shortly after, Senator Edward Kennedy called Congressional hearings, with Buxtum and HEW officials testifying.
An ad hoc panel was created to review the study. The findings showed that the men agreed to examination and treatment, but they were not informed of the actual purpose of the study. The panel then determined the study was “medically unjustified” and ordered its termination.
As part of the settlement, the US government paid $10 million at the time, which is valued at more than $50 million in 2018, and agreed to provide free medical treatment to surviving participants and family members.
Aftermath of the study
In 1974, the American Congress passed the National Research Act, and additionally created a commission to study and write regulations governing studies involving human participants. The government went as far as creating the Office for Human Research Protections within the Department of Health and Human Services.
Because of the Tuskegee experiment, studies involving human participants require informed consent, communication of diagnosis, and accurate reporting of test results. As in most cases, something bad has to happen, so that we understand the risks and create a rightful program.
In 1997, on May 16, US President Bill Clinton formally apologized and held a ceremony at the White House for surviving study participants. Five of the eight study survivors attended the ceremony. At the ceremony, the president 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
The apology led to congress in addressing the second goal of the Legacy Committee and Health Care at Tuskegee, which officially opened in 1999. The office explored issues that underlie research and medical care of African Americans.
In 2009, the Legacy Museum opened in the Bioethics Center in order to honor the hundreds of participants in the Tuskegee Study.
Studies have shown that the mistreatment of patients in the study significantly damaged the trust of the black community toward public health efforts in the United States.