Medical experiments on humans on non consenting patients: it sounds like a Nazi concentration camp type of story but in this case it is not. In the US in 1972 a “scientific research” on untreated syphilis was still going in a 40 years program where 600 unaware Afro-American men were studied.
The shameful study on syphilis of Tuskegee
In 1932 the publish health care of the US, PHS, venereal disease section, organised a research group in order to monitor the untreated syphilis in a group of Afro-American men, with 399 with a latent form of the disease and 201 healthy.
Blood test of a ill patient – 1953
The Tuskegee University, an Alabama college reserved to black people, collaborated to the project. Those were the years of the Great Depression and in the county of Macon there were many black sharecroppers heavily impoverished. Probably they could not believe they had access to free healthcare from the government, so they happily accepted to be part of the project.
Two doctors and the nurse Eunice Rivers, involved in the experiment
They did not know they became test subjects for that which was defined as “arguably the most infamous biomedical research study in U.S. history”. To none of those ill 399 subjects they ever told to have contracted syphilis; what they gave to them was a diagnosis for “bad blood”.
Eunice River and two members of the medical staff
That research was supposed to observe the effects of untreated syphilis for a period of 6 to 12 months after which, the ill patients would have received appropriate treatments. According to the knowledge of the time that would mean a procedure involving arsenic and mercury. After a few months of experimentation though, the funds destined to the study were cancelled and the expected cures gone with it.
Despite this, the director of PHS Taliaferro Clark decided to keep on going with the test. The idea was to determine the effects of the disease on the black patients compared to the white ones based on studies conducted in Norway. However, in the case with the white patients, the data would analyse the previous clinical history of patients who were under treatments.
Blood test – 1953
In reality Clark resigned before the 12 months from the beginning were over, but there was someone who was ready to take responsibility for the project and observing the progression of the untreated disease until death. In order to achieve this, the entire staff hid the diagnosis to the subjects and prevent them from accessing any care programs available in the territory.
Manifesto to advert the cure of syphilis – end of the 30’s
Those men went towards a terrible destiny as the pathology led to blindness, deafness, cardiac and mental disease, bones deterioration up until the nervous system collapse and final death. But that was not just it because all the patients, unaware of their condition, infected their wives (40 cases) and gave birth to children with congenital syphilis (19 cases).
Syphilis test on a woman unaware of her husband’s condition
Not even the definitive penicillin-based cure for the disease, in 1943, arrested the experiment. On the contrary Doctor Thomas Parran Jr. wrote in his annual report to the PHS that the study became “more significant now that a series of rapid methods and programs of therapies to treat syphilis have been introduced”.
That experiment represented the only possibility to research on how the disease would kill an untreated man. And that because the experimentation was beyond the rights of the individuals, even more so when it comes to poor Afro- Americans with no access to background information.
Medical check of a patient
Oliver Wenger, manager of the PHS, wrote: “ Now we know, where once we could only hypothesise, that we have contributed to their illness and shortened their lives. I believe the least we can say is that we have a high moral duty towards all men who died to make this project possible”.
the statement sounded as if Wenger was trying to justify the fact that the research had to carry on, in respect of all the victims that had occurred through it
Blood test – 1971
During the 40 years since the experiment started, the test subjects were prone to continue as they had free healthcare, the transportation from and to the clinic were refunded and therapies and side effects covered. Furthermore they had a free meal included when they had examinations. The doctors passed off as the “last chance of free special treatment” the lumbar injection which in reality was meant to sample spinal fluid looking for signs of neurosyphilis.
All the treatments given to the patients were in reality placebo, and death was the only destiny it was awaiting them, otherwise cured with a simple antibiotic. For the purpose of this experiment, the autopsy was the very last procedure to follow to reach the final data. The parents of the dead person would give the authorisation to that last medical check in exchange of a paid funeral.
Ill patients talking with the nurse Eunice River – 1970 circa
Throughout the years many doctors resigned from their role, some forwarded considerations of ethical impact. In 1965 a non involved researcher who had read the published data on a medical magazine, wrote a letter of protest to the staff members which was ignored. The following year doctor Peter Buxton did the same, this time though by sending it to the National Director of the venereal illness division of the PHS.
The responsibles of the experiment at a national level confirmed one more time the importance of carrying on the project, which meant until all subjects were dead. This was approved by the many medical associations of doctors, including the ones of the Afro-American community. After some other initiatives of other individuals, like doctor Peter Buxtun who turned to the press. On the 25th of July 1972 The Washington Star published the news, reported on the front page the following days by the New York Times.
The US government through its public health organisations had broken his own laws and conducted medical experiments on unaware citizens. The signatures and stamps of many supervisors demonstrate that they all knew and approved the situation. At that point the experiment was interrupted.
Of the original 399 ill patients only 74 were still alive
Six of the test subjects
The public health system never apologised both with the survivors and the families of the subjects. Not even the black nurse Eunice River apologised, the only member of staff who participated for the whole period. Her role was fundamental to maintain contacts with the black community and instill trust to the Afro-Americans involved. In 1975 she obtained a recognition from the Tuskegee Institute, where she studied, for her “several and extraordinary contributions to the nursing profession, which gave prestige to the Tuskegee Institute”.
On the other hand the son of one of the victims made a different consideration: “That was one of the worst atrocities ever carried out by the government. Not even dogs have ever been treated that way”.
From the 1975 the government gave medical assistance to the survivors and to all the people who got infected along the way. Treatments for the body, a little ineffective for the psychological wounds though. Sons and nephews of the subjects found out very little about the whole situation though, as that was a taboo to be ashamed of.
That shame and skepticism towards the public health system influenced the participation to that new program of medical assistance established in 1975.
Only in 1997 the American government with president Bill Clinton formally apologised to the victims during a ceremony in the White House; in that occasion 5 out of the 8 people still alive (at the time) were present. In 2004 the last survivor died too, perhaps after having forgiven those doctors who had failed in their fundamental duty of their profession: healing patients.
Or maybe not? However he certainly could have not forgot the deceit:
“Men who were poor and African American, without resources and with few alternatives. They believed they had found hope when they were offered free medical care by the United States Public Health Service. They were betrayed” (from Bill Clinton’s speech)..