If you ask the average person about nations responsible for unethical biological testing on human subjects, chances are America would be at the very bottom of the list. However, it is in the United States of America, that there is a great and proud tradition of biological testing on human guinea pigs.
As early as 1895 countless unethical experiments have been performed on test subjects. Many of the subjects were impoverished individuals who had little or no say in the matter, much less knew what was going on. Others that have been fed into the burgeoning industry of biological testing include prisoners, children, and minorities.
The flood of information about testing on human subjects reads like the evil agenda of a comic book villain, or even something that the tin-foil hat lunatic fringe would murmur about silently, for fear that ‘Big Brother’ would take them away if they talked too loudly about it. But it’s been so well documented that to refute the existence of such events would be to stick your head in the sand. Even the most incredible stories of soldiers being marched through nuclear bomb test sites to see how radiation would affect them, or mentally ill people being locked in refrigerators and even children being given spinal taps and hepatitis injections have occurred. While these stories sound like the babbling of the latest round of kool-aid kids, they are all part of documented cases reported in medical journals and newspapers alike. Incredibly, those responsible for these sorts of heinous acts are able to completely wash their hands of them.
The few cases that you might have heard about concerning these little known matters are usually underplayed and hid underneath the rug, only mentioned as little blurbs in the seedy underbelly of history to keep people from becoming a little too suspicious or nosy for that matter. Several of these tests were funded by various national governments. Furthermore, details concerning these experiments have constantly been struck from the record when regarded as being ‘too-sensitive’ for public viewing. As of 2010, not one researcher has been prosecuted for unethical testing, and several of the victims have never received official acknowledgement of what has been done to them, much less reparations.
To give you an idea of just what was considered “medically ethical” during the twentieth century, here is a short list of tests done on human subjects in chronological order. The squeamish might want to skip this.
1911: Dr. Hideyo Noguchi of the Rockefeller Institute for Medical Research publishes data on injecting an inactive syphilis preparation into the skin of 146 hospital patients and normal children in an attempt to develop a skin test for syphilis. Later, in 1913, several of these children’s parents sue Dr. Noguchi for allegedly infecting their children with syphilis1.
1931: Dr. Cornelius Roads, a pathologist from the Rockefeller Institute for Medical Research, purposely infects human test subjects in Puerto Rico with cancer cells. He writes “The Porto Ricans (sic) are the dirtiest, laziest, most degenerate and thievish race of men ever to inhabit this sphere… I have done my best to further the process of extermination by killing off eight and transplanting cancer into several more… All physicians take delight in the abuse and torture of the unfortunate subjects.” He later establishes U.S. Army Biological Warfare facilities in Maryland, Utah and Panama. He also is named to the U.S. Atomic Energy Commission, where he begins a series of radiation experiments on American soldiers and civilian hospital patients. See: Germ War: The US Record.
1943: In order to ‘study the effect of frigid temperature on mental disorders,’ researchers at University of Cincinnati Hospital keep 16 mentally disabled patients in refrigerated cabinets for 120 hours at 30 degrees Fahrenheit (Sharav).
1950-1953: The U.S. Army releases chemical clouds over six American and Canadian cities. Residents in Winnipeg, Canada, where a toxic chemical known as cadmium is dropped, subsequently experience high rates of respiratory illnesses (Cockburn and St. Clair, eds.). In order to determine how susceptible an American city could be to biological attack, the U.S. Navy sprays a cloud of Bacillus globigii from ships over the San Fransisco shoreline. According to monitoring devices situated throughout the city to test the extent of infection, the eight thousand residents of San Francisco inhale five thousand or more bacteria particles, many becoming sick with pneumonia-like symptoms and some die.
These are all horrific violations of human rights and shows a complete disregard for the sanctity of life and health among human beings by the those who would stoop to any level to further their research. However, the experiments seen here are not among the longest lasting tests done by scientists or the U.S. government on unsuspecting citizens. That dismal award goes to the Tuskegee Syphilis Experiments.
The Tuskegee Syphilis Experiment, which have been called “…arguably the most infamous biomedical research study in U.S. History,” was an experiment conducted from 1932 to 1972. The test group was three hundred and ninety nine impoverished African-American share-croppers who were infected with syphilis (and two hundred and one control subjects who were not), these people were treated no better than lab rats by the U.S. Public Health Service who hosted and provided funding for the studies. These men received none of the treatment that they had been promised or that they had sought. Instead, they were given placebos, ‘inaccurate reporting of test results’ and were generally taken advantage of at every turn from the very system that was supposed to help and protect them. Unfortunately, for many of these patients, it was also their first experience of health-care run by the state.
Unlike the final outcome, the initial plan for the Tuskegee Syphilis Experiment was not ethically questionable at all. Initially, Dr. Taliaferro Clark formed the study group and wanted to see untreated Syphilis progress for six to nine months immediately followed by a treatment phase. When other members of the study wanted to use deceptive methods, Dr. Clark tried to stop the proceedings, but found that he could not. Within a year, he had tendered his resignation. The treatment of syphilis prior to the discovery of Penicillin was a grab-bag of toxic treatments. Some of the methods use included Bismuth, mercurial ointments, and Salvarsan. These sorts of treatment only helped to curb the disease’s progress, they were not cures, and they were quite poisonous. With the ongoing effects of the Stock Market Crash of 1929, and the Great Depression looming, it looked as if the program would have to come to an end due to a shortage of money for further treatment.
Around this time, however, there developed a medical debate about the possibility of a ‘racial factor’ taking place in the spread of syphilis. As a result of this, the Tuskegee study quickly adopted a stance towards its subjects similar to that used in the ‘Oslo study’ of 1928, where several hundred white males who had contracted syphilis were deliberately left untreated for some time. It was decided that the Oslo study would be replicated in Tuskegee, Alabama. Initially, this was not to be an unethical action, there simply was no longer enough funding for the kinds of treatments being used at the time, and the least doctors could do was to watch the progression of disease ravage through their patients. However, pretty soon, a thick air of lies, deception, and thinly-veiled racism would lurk between the white doctors and their all-black patients.
It is perhaps important to note at this point that African-American access to health-care was almost non-existent at the time of this project. For many, the series of health-examinations conducted by the Public Health Service was the first treatment they had ever received. In order to drive more patients to participate, the Public Health Service recruited African-American church leaders, community elders, and other influential people to encourage greater participation among their numbers. And yet another lure was the invitation to join ‘Ms. River’s Lodge’ for those who could not afford traditional health-care.
Eunice Rivers was born in Tuskegee and had returned there to tend her career as a nurse. She was recruited at the start of the study by other head members and took to her role with great aplomb. Patients who joined Ms. River’s lodge received free medical examinations at Tuskegee University, were given free meals on examination day, including free transportation to and from the clinic, free treatment for minor ailments, and provision of free burial insurance. As the years rolled on and Public Health Service staff at Tuskegee kept changing, nurse Rivers was one of the few faces present from start to finish.
The Public Health Service’s recruitment drive would not have been nearly as successful without the unwitting assistance of key African-Americans and community leaders like Eunice Rivers. How could they have been coerced into working with the upper echelons of the white medical establishment? The prospect of working with a national government organization and opportunities for career advancement might have blinded them to the seedy nature of the experiments being conducted on their own friends and others they knew locally. Nurse Rivers herself was quoted with saying: “We were taught that we never diagnosed, we never prescribed; we followed the doctor’s instructions!” While her concern for her patients seems genuine, her willingness to follow instructions, along with the compliance of many others who must have known or suspected the truth was a major factor in the continuation of this vile experiment.
During this recruitment phase of the program, none of the volunteers were told that they were infected with syphilis. Dr. Raymond H. Vonderlehr, appointed on-site director of the treatment program, was crucial in shaping the many policies that would be carried out across the life of this experiment. Vonderlehr sought subjects for a spinal-tap procedure, and using carefully structured sentences and a few choice words, sent out fliers promoting a ‘once in a life-time treatment that would help them on the road to recovery.’ In reality, he wanted to study how disease moved from the spinal canal to the brain, and when those who were given this procedure asked how it would help them, he touted out some nonsense about being ‘therapeutic’.
Death by Syphilis is not a pleasant way to go. The long, slow anguish of the venereal disease can cause tumours, heart disease, paralysis, insanity, and blindness, all of which can take up to fifty years to kill. This was the fate of men who had placed their trust in doctors–men who had never seen a doctor before–and doctors who had stated that “As I see it…we have no further interest in these patients until they die.” Autopsies were carried out in secret for fear of causing high drop-out rates amongst the participating group. As one doctor put it, “If the colored population becomes aware that accepting free hospital care means a post-mortem, every Darky will leave Macon County.”
Among the more shocking aspects of the Tuskegee experiment is that it was never a secret. The experiment sent back reports and data, and the study was even leaked to a major newspaper as early as 1936 when it was broadly criticized. Local doctors tried to step in to ease the suffering of patients, but they were told not to interfere. During the Second World War, two hundred and fifty men from this group of patients signed up for the draft but found that they were refused entry because they suffered from syphilis. They were ordered to seek treatment before they could attempt re-enlistment.
It is a strange and tragic world in which we live, where Tuskegee Airmen who have served their country with such distinction during World War II that they are cited as a reason to end segregation in the armed forces, and yet, their friends, family, and neighbours back home are refused basic medical services that would have saved lives and ended the suffering of many.
It was in 1943 that Penicillin was found as the cure for Syphilis, and in case you may have been wondering whatever happened to Vonerlehr, he tendered his resignation that very same year, and one cannot help but marvel at his sense of timing.
By 1947, Penicillin was the standard treatment and cure for syphilis. When the Tuskegee test group was offered the option of distributing penicillin to their patients, it was refused. In the meantime, cases of syphilis among those treated with penicillin were drastically reduced, and a PHS research official went as far as to cite, “So far, we are keeping the known positive patients from getting treatment.” At one point, even the Surgeon General of the United States sent letters to the participants, congratulating them for staying with the program for twenty five years and giving them certificates of appreciation for their contributions to the study.
In the immediate-post World War II era, as Imperial Japanese and Nazi Germany experiments were being uncovered, there was a wide-backlash prompting medical authorities to bring forward reform and a general standard of ethics. After the widely publicized Nuremberg Trials, western Allies set-up the Nuremberg Code as well as the related Declaration of Helenski. The Nuremberg Code included such ground-breaking concepts as ‘informed consent’ and ‘absence of coercion’ in human experimentation. Both documents provided a bedrock for further medical reform world-wide. However, with regard to the Tuskegee Experiment, which violated so many aspects of the Nuremberg Code, it seems as if someone had failed to review it. Instead of terminating the program, a decision was made to continue it until the last subject died, and those responsible were able to disassociate themselves from the project quietly.
In 1966, Peter Buxton, who then worked for the Public Health Service in San Francisco as a venereal-disease investigator, spoke out about the general lack of ethics and morality surrounding the Tuskegee experiments. The Center for Disease Control reaffirmed that the study should continue regardless until the very last subject was dead and autopsied. To bolster it’s position, it found affirmation in its position alongside members of the national American Medical Association. Upon discovering what had been going on in Tuskegee, Buxton said: “I didn’t want to believe it. This was the Public Health Service. We didn’t do things like that.” He sent yet another letter in 1968 only for it to be ruled irrelevant.
Finally, fed up with the inadequacies of his letter writing, Buxton went to the Washington Star in the early 1970s. His story was on the front page of the New York Times by the next day. In response, Senator Ed Kennedy called together a congressional hearing at which Buxton himself testified. Shortly thereafter, the study was reviewed and finally terminated. The NAACP settled a class action law-suit and the US Government paid nine million dollars to the survivors and agreed to provide free health-care to all surviving participants and their infected family members, indefinitely.
The Tuskegee study sent such shock waves throughout the United States of America and was directly responsible for the creation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research, which was to oversee and regulate ethical human testing through the USA, and was was the first national body to do so.
By the time the proper authorities were notified of the crime seventy four of its subjects were still alive. Twenty eight of the original two hundred and ninety nine men had died of syphilis; one hundred of them died from complications of the disease, while forty of their wives were infected, and nineteen of their children came into the world with congenital syphilis.
Even after his cover had been blown and the story was widely circulated, Dr. John Heller still tried to defend his actions: “The men’s status did not warrant ethical debate,” he argued. “They were subjects, not patients; clinical material, not sick people.” As for the black people of Tuskegee, Alabama, the trust that this community had in the Public Health Service has been totally shattered. A 1990 poll conducted by the Southern Leadership Christian Conference in five cities in the area showed that 34% of respondents believed that AIDS is an artificial virus, while 35% believed that it is a form of genocide, and 44% think that the government has still not told the truth about the origins of HIV/AIDS.
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