By Hwaa Irfan
One of my favorite proverbs is the one that states: “I hear and I forget, I see and I remember, I do and I understand.” The reason is because this underlies the natural way in which we learn. Today, “I do and I understand” is very much missing from our learning process, whether that process be a secular or religious/spiritual one. Instead we re-invent from what we hear and what we see without any understanding at all. This is why Islam emphasizes the importance that action must follow upon knowledge, because without action there is no understanding in the context of reality that knowledge – it just remains a figment of our imagination, and as we know how dangerous the imagination can be.
We have been witnessing how dangerous the imagination can be since 9/11, verging on the ridiculous, and so it was after WWI and WII with the true enemy being the fear not the unknown. When a horror is committed having transpired from the minds of experts on behalf of a government, when disclosure occurs, a profuse round of apologies ensues and that is it! From the indigenous Americans/Canadians/Australians, and then we here no more of it! How often have I heard Westerners react with a “the past is the past”, but that can only be said by those who have never been forced to suffer for the past because of the nature of that past. If one discovered that a family member had been experimented on, how would one then react? It does not take the experience of being called at 2.00am in the morning to be told by a colleague that one’s father who is in the throes of dying from lung cancer is being experimented on by a renowned international hospital in a manner that will not prevent his death, or improve his condition in anyway whilst alive! In the separation of what is important to one’s self, from what is important to others, do we think we are capable of maintaining that distinction? There may be nothing better than a human guinea pig, but there is always a price to pay, and it will be paid simply because it is a fundamental law of nature until balance is restored.
There is in fact a long list of experiments on non-consenting victims, but here we will only focus on venereal disease, VD, because of the recent findings of the honorable Susan Reverby, professor of women’s studies, and medical historian at Wellesley College, Canada pertaining to injecting Guatemalans with syphilis.
An anti- SID/VD campaign was launched during WWI because Dr. John Parascandola, discovered that 13% of U.S. draftees had contracted syphilis or gonorrhea. A VD unit was established within the Public Health Service, PHS, the body responsible for experiments in what has been referred to as the Tuskegee Project/Study, Guatemala and other small scale experiments in between. However, the campaign was not in a manner that we understand the meaning of campaign today, because there was no objective to educate the public. The objective was one of social control which included prevention of prostitution around military camps. The result was 20,000 women were quarantined or imprisoned. It was after WWI that VD became a public health issue under the auspices of Dr. Thomas Parran, head of PHS after WWI. Met with opposition, Parran was obliged to treat it as a moral issue only.
How it transpired from there one can only tell from the evidence, because in cases, Tuskegee, and Guatemala, what was learnt from one was transferred to the other.
In the U.S., in 1944, attempts were made to “inoculate/infect” inmates of the Terre Haute Federal Penitentiary against gonorrhea, but failed because they did not display any symptoms. In 1953 attempts were made to inoculate inmates of Sing Sing Prison against syphilis the method of which was repeated in Guatemala according to Reverby. Taking place over a two-year period 1946 – 48 under assistant surgeon general, Dr. John C. Cutler of PHS. Cutler was also a main researcher for the Tuskegee experiment, and a huge defender of the experiment who since then moved further afield to India and Africa. The Guatemalan government gave consent, but then Guatemala was owned very much at the time by the United Fruit Company, which controled the railways, electricity, the communication system (telegraph), and 40% of the best land. In Guatemala, doctors were directly involved. Treatment was given for syphilis, and that treatment was penicillin. However, the “volunteers” like those in Tuskegee did not give their consent, and the Guatemalan volunteers did not have syphilis until they were infected by the doctors. Infection was of two kinds, through infected prostitutes, and through specimens of the disease in the form of a vaccine (most vaccines contain the germ that it seeks to cure), from the pre-tumor sores. Reverby comments:
“Exploring why these experiments in Guatemala were so different from those in Alabama provides insight into the ethical concerns of the PHS researchers, the powerful pull of the need for scientific knowledge, and the difficulty of analyzing the inter-relationship and movement of research between what has been called the “imperial periphery” and “metropolitan transformations.”
Here, Reverby informs us of the history of PHS, in foreign quarantines. PHS coordinated disease control in South/Latin America, countries which in turn sought funding from PHS and Rockefeller to establish “healthcare” in the indigenous parts of the countries. PHS was not alone in this endeavor, Harvard University supplied info about the prevalence of the disease in Guatemala, the National Institute of Health (then a pan-American Sanitary Bureau branch of PHS) provided funding, the Guatemala’s Ministry of Health, the National Army of the Revolution, the National Mental Health Hospital, and the Ministry of Justice were all involved. There were assumptions/racial profiling about the disease: syphilis is common amongst the Latin community, and when Indians/indigenous are infected, it appears in a mild form.
The objective was to see how:
“…fresh infective material to enhance body response to disease…[to understand] superinfection and reinfection.”
Also, to see how volunteers responded to various treatments/chemicals, and how to prevent syphilis. The purpose was to see how it good benefit U.S. troops. The “volunteers” were inmates of Guatemala City’s Central Penitentiary. The deal was to allow some prostitutes infected with syphilis and gonorrhea to visit the inmates, a service which was paid for by American taxpayer’s money via PHS. Other prostitutes were previously not infected but were made infected by having a specimen of syphilis put on their cervix before visiting!
The results were not totally as expected as there were no clinical evidence/symptoms of the disease within the inmates. The repeated tests brought about resistance from the inmates. However, the experiment did not stop there, but went on to experimenting on children, but not the consent to give them syphilis. Instead 438 children from the National Orphanage received blood tests. The children were aged 6 – 16, and 3 children tested positive for congenital syphilis! They were treated with penicillin. Conveniently, another 89 children tested positive for syphilis, but unfortunately for PHS, they displayed no clinical symptoms. The experiments did not stop there; they turned to inmates of an asylum. The doctors could not employ prostitutes, so instead they went for injecting them with the bacteria. This was done without their consent, i.e. they thought they were getting some sort of medication/drug. Cutler in his anticipation wrote to a colleague:
“… we are holding our breaths, and we are explaining to the patients and others concerned with but a few key exceptions, that the treatment is a new one utilizing serum followed by penicillin. This double talk keeps me hopping at time”.
Unlike the communities of India and Africa today who are highly suspicious of any vaccination campaign, the inmates thought nothing of it once they got what they needed which was anti-convulsant drugs for epilepsy, a refrigerator, a projector to provide them with their only entertainment, eating and drinking utensils, and cigarettes as bartering for an inoculation, spinal tap or a clinical observation.
However, the pressure from the U.S. to get results was to no avail, as Cutler failed to get adequate data, which in turn affected future funding. Key PHS researcher concluded that:
”We would be obliged to canvas the South and Central American nations, the Mexican Indians, the Indian tribes in the United States, and finally, the southern negro.”
“The story of the work in Guatemala also confirms that fact about non-infecting in the “Tuskegee” Study, since it shows the difficulty of infecting individuals with syphilis in a scientific project. The lengths that Cutler and his colleagues had to go to give the disease to the inmates of the asylum, prison and army barracks in Guatemala, and then later in less atrocious ways at Sing Sing, provide us with a way to say this is not what happened in Tuskegee”.
It was Reverby’s previous research that led her to the experiment in Guatemala, noting that a doctor involved in the Tuskegee experiment was also involved in Guatemala.
PHS launched a study into VD in 6 Southern states, states which had large African-American populations. Initially there was some funding, but after two years there was no funding. This was the time of the Great Depression, following the first global economic collapse. PHS moving forward, selected the poor rural of Macon County, Alabama in order to carry out a smaller experiment. Macon County was considered to be a “natural laboratory” where the racial profile of African-American intelligence was believed to be low. Other stereotypes included promiscuity, and ignorance of treatment ignoring that the government did not want to “educate the public,” and that there was only one African-American doctor who could only afford to treat those who could pay in what was after all the Great Depression.
Handbills were distributed in the autumn of 1932, promising treatment for men with “bad blood.” “Bad blood” to an uninformed community meant a wide range of things, not necessarily VD, so of course there were takers in an area where there was little medical care. One volunteer still alive today told PBS:
“The way I heard about it was through a rumor that the people that came out of Macon County, and people said you could get free medicine for yourself and things of that kind, and they would have a meeting at Salmon Chapel at a certain date. And those of us who were eligible, was of a certain age, why, then you had to be a certain age to be eligible to participate in this meeting, therefore I went”.
Other volunteers of the experiment told PBS:
“They say they gonna treat us–they just said bad blood”.
“We got three different types of medicine. A little round pill–sometime a capsule–sometime a little vial of medicine–everybody got the same thing”.
All those who went expecting treatment received blood tests, and of those 399 men had tertiary syphilis, and 201 men served as controls being without the disease. Those with syphilis were not told of their condition or a part of a medical experiment that was to last for 40 years! When WWII arrived PHS was able to prevent the volunteers from being drafted because they did not want the volunteers to discover that they had syphilis, which they would under the obligatory army medical check-up.
Administered from Washington, the face of the medical treatment given was an African-American nurse, Eunice Rivers. Rivers provided free transportation to the clinic, free meals, and free burials. Ironically, the clinic was held in the famous Tuskegee Institute, which was founded by Booker T. Washington for the education of African-Americans freed from slavery. The Institute was federally funded, but the Tuskegee Institute had nothing to do with the experiment. The vial given for treatment was no more than medication for a common cold. When penicillin was discovered in 1947 as a cure for syphilis it was not given to the volunteers. It was a non-therapeutic experiment the objective of which was to find out the effect of syphilis. Charlayne Hunter-Gault recounts for PBS how Rivers even followed one of the volunteers to Birmingham County to stop him from getting a penicillin shot!
There was no protocol for the experiment as discovered by Associated Press when news broke out via a leak in 1972, and it was in 1972 that work began on investigating the experiment by James H. Jones, author of “Bad Blood”, a doctor who worked with the lawyer who took on Tuskegee cases, exploring medical and official records.
Originally intended to last for 6 months, the study lasted for 40 years, 40 years of collecting data on the living and the dead with syphilis, and 40 years of being discussed in the nation’s top medical journals, reports, conferences and professional meetings. Yet, an intern at the Tuskegee in 1932, Dr. J. W. Williams who helped in the clinical work pertaining to the experiments admitted that neither interns knew what they were studying nor volunteers knew what they were being treated for – the volunteers though they were being treated for a bad stomach or rheumatism. When Dr. Reginald James was signed to public health in Macon County, for the specific purpose of diagnosing and treatment of syphilis, he came up against Eunice Rivers who was assigned to work with him. Rivers role as a PHS employee for the experiment was as a liaison between the researchers and the volunteers. When Williams found one of the volunteers, Rivers would instruct Williams not to treat the volunteer. When Williams insisted on treating the volunteers, they would not turn up. Williams since then discovered that they were instructed that they would lose their medical treatment and all their benefits. The Damocles sword lived right in the midst of Tuskegee, and she was chosen well by PHS to do their dirty work! However, one has to ask the question, how can someone live in the community and do what she has done, and the only reply that comes back is that Rivers must have been under a different impression of her role, and what she was actually doing to others!
Syphillis – is a contagious, life threatening disease if not treated. It can be acquired through skin contact or mucous membrane or congenitally transmitted to the fetus of the mother is infected. In the primary stage, the bacteria Treponema pallidum, works its way into the lymphatic system, multiplying as they go working their way into the blood stream. The secondary stage can last months or years, beginning with a rash (maybe fever, headaches and other non-specific symptoms. The bones and joints are painful, and one begins to have palpitations, but after a while, there seems to be a going into recession. Meaning while, the Treponema pallidum is working its way into the bone marrow, vital organs, and the central nervous system. In the final stage, the lesions caused by Treponema pallidum within the organs, (including the brain) turns into soft tumors, as well as ulcers on the skin.
In 1972, the first report in the press about Tuskegee was from the reporter Jean Heller, of Associated Press. The furor in the press verged from:
ABC’s Harry Reasoner’s coverage referring to the PHS:
“… only mildly uncomfortable…[with an experiment that] “… used human beings as laboratory animals in a long and inefficient study of how long it takes syphilis to kill someone”.
Editor of the Philadelphia Inquirer:
“That it has happened in this country in our time makes the tragedy more poignant,”
Editor of Providence Sunday Journal:
“… the flagrant immortality of what occurred under the auspices of the United States Government”.
“There is always a lofty goal in the research work of medicine, but too often in the past ot has been the bodies of the poor… on whom the unholy testing is done”
Those who followed the breaking news on Guatemala, echo these same sentiments, but what is there recompense?
Fred Grey, a civil rights attorney took up the cudgel, and took class action suit on behalf of the Tuskegee “volunteers”. He labor much on the legal and medical records from 1972 – 74, and won them an out of court settlement of $10mn. The government was ordered to provide lifetime healthcare for the “volunteers” as well as some of their relatives, but it was 65 years later, with only 8 surviving members that they got what they really wanted, an official apology.
PRESIDENT CLINTON: The United States Government did something that was wrong, deeply, profoundly, morally wrong. It was an outrage to our commitment to integrity and equality for all our citizens. 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. (Applause)
On behalf of President Obama, the U.S. Secretary of State and Health (Mrs. Clinton and Health Secretary Kathleen Sebelius) said
“The sexually transmitted disease inoculation study conducted from 1946-1948 in Guatemala was clearly unethical. Although these events occurred more than 64 years ago, we are outraged that such reprehensible research could have occurred under the guise of public health. We deeply regret that it happened, and we apologize to all the individuals who were affected by such abhorrent research practices. The conduct exhibited during the study does not represent the values of the United States, or our commitment to human dignity and great respect for the people of Guatemala. The study is a sad reminder that adequate human subject safeguards did not exist a half-century ago.
“Today, the regulations that govern U.S.-funded human medical research prohibit these kinds of appalling violations. The United States is unwavering in our commitment to ensure that all human medical studies conducted today meet exacting U.S. and international legal and ethical standards. In the spirit of this commitment to ethical research, we are launching a thorough investigation into the specifics of this case from 1946. In addition, through the Presidential Commission for the Study of Bioethical Issues we are also convening a body of international experts to review and report on the most effective methods to ensure that all human medical research conducted around the globe today meets rigorous ethical standards.
“The people of Guatemala are our close friends and neighbors in the Americas. Our countries partner together on a range of issues, and our people are bound together by shared values, commerce, and by the many Guatemalan Americans who enrich our country. As we move forward to better understand this appalling event, we reaffirm the importance of our relationship with Guatemala, and our respect for the Guatemalan people, as well as our commitment to the highest standards of ethics in medical research.”
However, Project Shad was only 10 years ago. Project Shad was a Department of Defense initiative involving 4,000 naval men who were exposed to:
- Bacillus globigii (BG)
- Coxiella burnetii [which causes Q fever]
- Pasteurella tularensis [which causes tularemia or ‘rabbit fever’]
- Zinc Cadmium Sulfide, Beta-propriolactone
- Escherichia Coli (EC)
- Serratia Marcescens (SM)
- Sodium Hydroxide
- Peracetic acid
- Potassium hydroxide
- Sodium hypochlorite
There were 40 experiments known to the government. Despite all the heart-felt apologies one thing was made clear in the governmental briefing given pertaining to Reverby’s disclosure of what happened in Guatemala involving Assistant Secretary of the Bureau of Western Hemisphere Affairs, Arturo Valenzuela, and Dr. Francis Collins, Director of the National Institutes of Health:
QUESTION: I’m from Guatemala. I work at a Guatemalan newspaper. I just want to know, do you think that after the U.S. Government paying for this monstrosity and then eight years later overthrowing a democratically elected president in Guatemala, are we going to get some sort of compensation? I’m not talking about economic or something, but is “sorry” enough for this?
DR. COLLINS: Thanks. Sorry, what newspaper are you with?
QUESTION: Diario des America.
ASSISTANT SECRETARY VALENZUELA: Well, I would just reiterate what I said earlier, and that is that with these two studies that are being commissioned now, we will await the findings and recommendations of those studies before we move forward. And I would caution you not to link the two events that you’re talking about. The one that we’re discussing now occurred in ’46, ’48, and the other one that you just mentioned occurred in ’54, and they’re not linked”.
A government cannot relieve itself of responsibility with just an apology because it has changed Administration otherwise it will be worth nothing to the citizens if one Administration does not learn the lessons of previous Administrations. If ethics are circumstantial, then at any given time, a section of the population can be given up to some form of experiment whether it be health, culture, religion, economics, or self interest/politics. When one talks about building a future for a people that it has taken responsibility for, where does that past begin, and whose past is included?
BBC. US Medical Tests in Guatemala “Crime Against Humanity.” http://www.bbc.co.uk/news/world-us-canada-11457552
Henry, P. “Bad Science: From Guatemala VD “Research” to CIA-DoD Interrogation Experimentation” http://patrickhenrypress.info/node/290295
Parascandola, J. et al. Epidemics in the United States: Public Policy Responses and the Lessons to be Learned. http://www.wilsoncenter.org/index.cfm?topic_id=116811&fuseaction=topics.event_summary&event_id=144286
“An Apology 65 Years Later.” http://www.pbs.org/newshour/bb/health/may97/tuskegee_5-16a.html
Jones, J. H. “Bad Blood.” Collier Macmillan Publ. U.K. 1981
Reverby, S.M. “Normal Exposure” and Inoculation Syphilis: A PHS “Tuskegee” Doctor in
Guatemala, 1946-48 http://www.wellesley.edu/WomenSt/Reverby%20Normal%20Exposure.pdf
U.S. gov. Briefing on the U.S. Public Health Service STD Inoculation Study of 1946-1948 Via Teleconference http://www.state.gov/p/wha/rls/rm/2010/148546.htm
Washington Post. “U.S. Apologizes for 1940s Syphilis Inoculation Experiment in Guatemala” http://voices.washingtonpost.com/checkup/2010/10/us_apologizes_for_1940s_experi.html