If there's one thing that burns me about so-called "complementary and alternative medicine" (CAM) clinical trials, it's how unethical many of them are. This is particularly true for trials that test modalities that, on the basic science grounds alone, can be dismissed as so highly implausible and with such a low prior probability of success that it is unethical to subject patients to risk with close to zero potential for benefit. Perhaps the most egregious example of such a clinical trial is the Gonzalez protocol in pancreatic cancer, a cornucopia of woo and quackery including up to 150 supplements a day, various dietary interventions, and coffee enemas. When the results were finally reported over a year ago, four years after the trial ended, to no one's surprise (at least no one with at least a modicum of scientific knowledge) the results not only showed that the Gonzalez protocol produced inferior results to those of science-based medicine (SBM), but it wasn't even close. Patients in the conventional medicine arm lived three times longer, an astonishing result in light of the poor efficacy of existing treatments for unresectable pancreatic cancer, a result that Gonzalez couldn't just wave away, although he did try. Other examples include clinical trials of homeopathy for infectious diarrhea in Honduras and a clinical trial of chelation therapy. I've also criticized the "autism biomed" movement, that amalgamation of parents who believe that vaccines cause autism and are willing to subject their children to all sorts of quackery to "cure" the "vaccine injury" of uncontrolled and unethical experimentation on autistic children, the worst examples of which are Andrew Wakefield and, even worse, Mark and David Geier.
These abuses of science and ethics notwithstanding, whenever a story describing a lapse in research ethics in clinical trials in SBM come around, you can count on the crazies to pounce all over it as "proof" that SBM is hopelessly corrupt and, by implication, that there must be something to their woo, be it anti-vaccine pseudoscience and quackery or quackery of any variety. That's why it didn't surprise me too much to see that neither the anti-vaccine crank blog Age of Autism nor über-quack Mike Adams wasted any time pouncing all over a news report about a horrifically unethical study that the U.S. Public Health Service (PHS) carried out in Guatemala in the 1940s. At AoA, Media Editor Anne Dachel layed on the stupid with a post entitled Valid Concern for 60 Year Old Medical Travesty: What About Today's? while over at NaturalNews.com Mike Adams ramped the crazy up to 11--does he even have a lower setting?--in writing Guatemalan STD medical experiments were just one crime in a long history of medical-government collusion to use humans as guinea pigs. In each case, an advocate of pseudoscience and quackery starts out with a reasonable complaint, a terrible and disturbing story, even, and then completely misses the point. Instead of understanding that such incidents emphasize the need for guidelines to protect patients from unethical experiments, including those by their heroes, they use them as a weapon, as you will see. This particular incident was indeed a gross failure on the part of SBM to live up to ethical precepts, but, as shocking as this incident is, it does not validate Mike Adam's quackery and conspiracy theories or Anne Dachel's anti-vaccine pseudoscience any more than it invalidates science-based medicine.
The Guatemalan syphilis experiment
A couple of weeks ago, I wrote about the concept of clinical equipoise. Clinical equipoise is a critical concept in any clinical trial. Basically, a state of clinical equipoise exists when there is genuine scientific uncertainty over which of the options being tested in on living, breathing human beings is better, and any clinical trial in which a state of clinical equipoise does not exist is at the very least ethically dodgy and probably downright unethical. What all this boils down to is that science is only part of the basis of science-based medicine. Medical ethics must take precedence. After all, arguably the most efficacious way to test a new antibiotic would be to infect people with the bacteria the antibiotic treats and then dividing these people up into a placebo control group and a group receiving the antibiotics to see how each group does. In fact, this is the sort of thing that the Nazis and Japanese did during World War II and the same sort of dehumanization and abuse of research subjects that every ethical precept regarding human subjects research that has been developed since World War II, such as the Helsinki Declaration of 1964, has been designed to prevent.
Unfortunately, medical scientists in the U.S. have not always lived up to these precepts. The most famous example is arguably the Tuskegee syphilis experiment, in which poor black men with syphilis were studied and the control group denied effective therapy for syphilis even after it was known that penicillin was an effective treatment for syphilis. Unfortunately, it turns out that there was arguably an even worse atrocity against medical ethics perpetrated by U.S. investigators in Guatemala over 60 years ago that only now has come to light in stories in the New York Times, MSNBC, and elsewhere. So bad was the offense that Secretary of State Hillary Clinton and Secretary of Health and Human Services Kathleen Sebelius have issued a formal apology to the Guatemalan government for the experiments in which Guatemalan prisoners were intentionally infected with syphilis and then treated with antibiotics, an apology that President Obama reiterated in a personal telephone call to Guatemalan President President Alvaro Colom on Friday. This is the story that Adams and Dachel are using as a weapon to use against their foes for their own viewpoint. As despicable as the actions of U.S. researchers were, however, it is nothing of the sort.
A crime against humanity
The Guatemalan syphilis experiment might have remained lost in the depths of history, unknown, records of its having taken place buried in archives at the University of Pittsburgh, were it not for the efforts of Wellesley College Professor of Women's Studies Susan Reverby and medical historian, who unearthed the notes of John C. Cutler, who, ironically enough, was later an important member of the team carrying out the Tuskegee experiment and continued to defend the study 20 years after it was closed. In fact, Cutler defended the Tuskegee experiment to his dying day in 2003.
What Professor Reberby found was horrifying, and she has recently published a manuscript describing her findings. Because I always like to go to the primary source wherever possible, I will refer you to the manuscript, available on Dr. Reverby's faculty web page and entitled "Normal Exposure" and Inoculation Syphilis: A PHS "Tuskegee" Doctor in Guatemala, 1946-48 (synopsis here). The HHS response can be found here, including the statement issued on Friday by Clinton and Sebelius in both English and Spanish.
The Guatemalan syphilis experiment was arguably worse than the Tuskegee experiment because the men involved in the experiment were intentionally infected with syphilis. The fact that the Guatemalan experiment only lasted two years and every man infected who contracted syphilis was given penicillin does not mitigate the guilt of the researchers. As the full manuscript describes, although researchers did obtain permission for their studies from the prisons and other institutions with which they worked, they did not receive permission from the inmates or their families. Indeed, deception was part and parcel of the entire process. In return for cooperation, researchers offered supplies to the institution, such as anti-seizure medications like Dilantin, refrigerators to store medications, and a "motion picture projector that supplied the sole recreation for the inmates, metal cups, plates and forks to supplement the completely inadequate supply available." Individual subjects were plied with cigarettes, "an entire packet for inoculation, blood draws or spinal taps and a single cigarette for 'clinical observation.'"
Researchers also went to ludicrous extremes to infect the men with syphilis. First, they took advantage of legalized prostitution in Guatemala and the fact that Guatemala allowed prostitutes to pay regular visits to men in penal instituions by locating prostitutes with syphilis:
With the cooperation of officials at the Ministry of Justice and the warden of Guatemala City's Central Penitentiary, which housed nearly 1500 inmates, prostitutes who tested positive for either syphilis or gonorrhea were allowed to offer their services to prison inmates, paid for by U.S. taxpayers through the funds of the PHS. In yet another set of experiments, uninfected prostitutes had inoculum of the diseases placed on their cervixes before the sexual visits began. Serological tests were done on the inmates before the prostitutes were invited to the prison and then afterwards to see if infection had occurred. The men were divided into groups and various chemical and biological prophylaxis techniques were tested after presumed infection. If positive, the men were then provided with enough penicillin to produce a cure.
Your tax dollars at work in 1946. This method soon ran into problems. Ultimately, Cutler and his team went beyond using prostitutes and isolated syphilis to directly inoculate inmates with. Their sources were the gumma (syphilitic growths) on the testicles of infected rabbits or scraping the penile chancres of infected men, from which they had to isolate the spirochete that causes syphilis. This was difficult, because the spirochete could not survive more than 45 to 90 minutes outside the body, during which time it had to be isolated, centrifuged with fresh home made beef heart broth, and then delivered to the subjects:
With the men, the inoculation was often much more direct after what soldiers for generations had called the "short arm" inspection. They chose men with "at least moderately long foreskins [to keep the mucus membranes moist]" and who could "sit or stand calmly in one spot for several hours." In the experiments, a doctor held the subject's penis, pulled back the foreskin, abraded the penis slightly just short of drawing blood by scraping the skin with a hypodermic needle, introduced a cotton pledget (or small dressing) and dripped drops of the syphilitic emulsion onto the pad and through it to the roughed skin on the man's penis for at least an hour, sometimes two.
This was also compared with other methods of introducing the spirochete, including scraping of the forearm, ingestion of syphilitic tissue mixed with distilled water, introduction into the spinal fluid, and direct injection into the bloodstream.
It turns out that even back in 1946 many of the officials who knew of or participated in the experiment knew it was unethical. Even Cutler was reported to have said, "As you can imagine, 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." Even more disturbing is the general attitude among several researchers seemed to view law breaking as sometimes necessary for the advancement of medical science, as Thomas Rivers, who led the Rockefeller Institute for Medical Research Hospital in New York, made clear in his memoir in 1967:
Well, all I can say is, it's against the law to do many things, but the law winks when a reputable man wants to do a scientific experiment. For example, the criminal code of the City of New York holds that is a felony to inject a person with infectious material. Well, I tested out live yellow fever vaccine right on my ward in the Rockefeller Hospital. It was no secret, and I assure you that the people in the New York City Department of Health knew it was being done....Unless the law winks occasionally, you have no progress in medicine.
The mind boggles at this attitude, in which the physician, the scientist views himself as somehow above the law, above "conventional" morality. Once a scientist goes down this path, he can justify almost anything. It is against this attitude that ethical standards and laws have evolved. It is also as a result of these abuses that many minorities and underprivileged groups of people are mistrustful of physicians and science. Supporters of SBM can't deny that there have been serious ethical violations committed by overzealous scientists who came to value the study of their scientific question more than they did for the rights and dignity of their human subjects, because the evidence of such violations of human rights are incontrovertable. The questions remain: What to do about them and how to prevent them?
The Belmont Report, The Common Rule, and CAM
After the horrors of Nazi medical experimentation and the abuses during the Tuskegee syphilis study (remember, the Guatemalan syphilis experiment was not widely known about until now), it was clear that rules were needed to protect human research subjects from such abuses. First came the Nuremberg Code in 1947. This code, drafted in the wake of the infamous Doctors' Trial at Nuremberg set forth ten principles to govern human subjects experimentation. Examples include the requirement for informed consent; that unnecessary pain and suffering be avoided; that the experiment should be designed based on the results of animal experimentation and knowledge of the natural history of the disease that justifies the performance of the experiment (prior plausibility, anyone?); the requirement that subjects can refuse to continue at any time; and that no experiment should be conducted where injury, disability, or death can reasonably be expected (clinical equipoise). The Declaration of Helsinki, introduced in 1964 by the World Medical Assembly, is based on the same principles as the Nuremberg Code but takes them even further, for example, stating that "the interest of science and society should never take precedence over considerations related to the well-being of the subject." The Helsinki Declaration was last updated in 2008. For once something other than a quack destroyed my irony meter; at the time the Nuremberg Code was being written and approved that the U.S. government was engaging in the same sort of abuse of human research subjects that the Nuremberg Code was designed to combat.
In the U.S., the Nuremberg Code and the Helsinki Declaration notwithstanding, he Tuskegee debacle was the impetus that led to the Belmont Report on Ethical Principles and Guidelines for the Protection of Human Subjects of Research finalized on April 18, 1979, which remains to this day essential reading for anyone doing human subject research in this country. Later these regulations were finally codified into what is now known as The Common Rule. All institutions doing federally funded research are required to adhere to The Common Rule.
A key aspect of The Common Rule is the Institutional Review Board (IRB). The IRB is in essence a committee that oversees all human subject research for an institution and makes sure that the studies are ethical in design and that they conform to all federal regulations. I've written extensively about The Common Rule before in the context of how certain CAM trials violate the Common Rule and how, for example, Mark and David Geier created a sham IRB packed with their cronies (as so ably documented by Kathleen Seidel) to rubberstamp their unethical studies of using Lupron to treat the "vaccine injury" they believe to be the cause of autism. What is important (and embarrassing for proponents of SBM) to note is that The Common Rule only first went into effect in 1981 and only reached its current form in the 1991 revision to the U.S. Department of Health and Human Services Title 45 CFR 46 (Public Welfare) Subparts A, B, C and D. Subpart A. What that means is that, in the United States at least, the current government regulations mandating a baseline standard of ethics have only been in effect less than 30 years and only in their current form for less than 20 years.
The CAMsters attack
Not surprisingly, CAM proponents have jumped all over these revelations. For example, even quackery promoter Mike Adams has a grain of a valid point when he writes hysterical headlines like Guatemalan STD medical experiments were just one crime in a long history of medical-government collusion to use humans as guinea pigs. This post by Adams is yet another in a line of examples showing that there are no depths to which Adams won't sink in order to attack SBM and that, if there's one thing he excels at, it's taking a legitimate criticism of SBM, such as a trial like this one in which a gross violation of research ethics, and hopping on the crazy train with it, only to go off the rails. For example, most of the examples Adams cites date back at least 50 years and are now commonly known. Few of them are more recent than the 1970s. More deceptively, most of these more recent ones are either problems that couldn't reasonably been foreseen (for instance, the observation that 30%% of the participants of a trial for a vaccine against hepatitis B were found to be HIV-positive in 1983) or that are questionable pseudoscience at best, such as ranting against the clinical trials of Gardasil or labeling vaccine mandates as being the equivalent to the Tuskegee or Guatemalan syphilis experiments. If you want to know how vile Adams can be, check out this passage:
If you really want to be freaked out by the true, documented history of how people have been tortured, abused, injected, maimed and otherwise had their lives destroyed by the medical industry, check out the Psychiatry An Industry of Death Museum created by CCHR (www.CCHR.org).
Watch the video here: http://www.cchr.org/museum.html%23/...
You can actually walk through this museum yourself. It's in Los Angeles, and it's one of the most disturbing things you'll ever see about the true history of medicine. The STD experiments in Guatemala, by the way, were carried out in a psychiatric hospital. (No surprise.) I walked through this museum and practically found myself in tears before it was over. The things that psychiatrists and doctors will do to other human beings in the name of "medicine" will rock you to the core.
The psychiatric industry has done unspeakable things to women, children, prisoners, senior citizens, African Americans and racial minorities -- all in the name of "science" and "medicine." In fact, these experiments continue to this day in the form of the psychiatric drugging of children who are diagnosed with fictitious health conditions such as "ADHD." See my disease mongering engine to invent your own psychiatric disorders, if you want a bit of satire on this subject: http://www.naturalnews.com/disease-...
Nobody has documented the real history of medicine's criminal abuse of human beings as well as CCHR - the Citizens' Commission on Human Rights. Check out their amazing, shocking and eye-opening videos such as The Marketing of Madness (http://www.cchr.org/videos/marketin...) and Making A Killing (http://www.cchr.org/videos/making-a...).
The CCHR, which stands for the Citizens' Commission on Human Rights, is a well-known Scientology front organization. I've written about its Psychiatry: An Industry of Death Museum before. It's so vile an abuse that even the Hitler Zombie wouldn't touch it. Indeed, the last time I was in Los Angeles, I seriously thought about going into the museum just for yucks (it happens to be located less than a half a mile from a place to which I consider a visit to be absolutely mandatory any time I'm in LA, Amoeba Music and I've even walked by it). Fortunately for my blood pressure I didn't go in. It was a wise decision, too, given the reputation of Scientology for using any and all means to silence criticism. Also, the sheer paranoia, conspiracy theory mongering, and blatant idiocy of the exhibits would have sent waves of neuron-apoptosing burning stupid at my brain, and I have enough problems to deal with as it is.
That's right, Mike Adams is using the Guatemalan syphilis study to side with the Church of Scientology and attack all psychiatry as pure evil. In fact, as Andrew Gumbel noted nearly five years ago, to Scientology, it's not enough just to say that psychiatry has been guilty of abuses in the past, it has to be completely demonized. Mike Adams agrees. In fact, this is the sort of thing he says about all SBM, not just psychiatry.
The anti-vaccine propagandists at AoA were also more than happy to use this story for their own purpose, namely to attack vaccines. Anne Dachel, Media Editor for the anti-vaccine propaganda blog Age of Autism, predictably parroted yesterday tried to equate the Guatemalan study to how supposedly medicine is harming children with those evil vaccines in a post entitled Valid Concern for 60 Year Old Medical Travesty: What About Today's? Here, Dachel attacks bioethicist Art Caplan for alleged hypocrisy in his refutations of anti-vaccine misinformation in "contrast" to his justifiable outrage over the revelation of the Guatemalan syphilis experiment, even going so far as to write:
Caplan's harsh words over the syphilis experiments should extend to the government's actions covering up the evidence linking vaccines to autism. His words, "Nonetheless, officials knew it was wrong," also apply to the issue of using mercury in vaccines. The mercury-based vaccine preservative thimerosal has a history that should call any safety claims into question.
And:
Increasing exposure to mercury is having a dramatic impact on our lives. "Nonetheless, officials knew it was wrong" also means that there's a great incentive to cover up the damage at all costs. There is a real lesson from the Guatemala and Tuskegee experiments. Let's hope it doesn't take 60 years before officials admit what mercury exposure in vaccine has done to our children.
Meanwhile, the commenters on AoA, as is usual, chime in with even more napalm grade flaming stupid. The usual suspects are there. There's Jake Crosby parroting his new favorite phrase of "tobacco science," apparently having learned it from Dr. Jay Gordon and having zero clue exactly what he is talking about. He even uses the tired old quack tropes about Semmelweis and Galileo, apparently unaware that the Galileo gambit is every bit as lame as he views appeals to prestige. Here's a hint, Jake: To wear the mantle of Galileo it is not enough to be persecuted for your scientific views. You also have to be right. Neither Jake nor any of his heroes at AoA can in any way be considered "right. In the case of vaccines science is on the side of those defending the clinical trials studying vaccines and their efficacy, not on the side of anti-vaccine activists like Anne Dachel. Odd, too, that neither she nor any of the commenters mentioned Mark and David Geier's and Andrew Wakefield's completely unethical experiments. Yes, charges of hypocrisy go both ways.
Unfortunately, the paranoia is so thick on AoA that no reason or science can overcome it and a a commenter there can say without irony:
I have a sneaking suspicion that Kathleen Sebelius's apology to Guatamala and the engineered-seeming press "outrage" over the 60 year old atrocity is a bomb disposal operation to preempt and defuse certain revelations in Olmsted and Blaxill's The Age of Autism. Because of the way the authors present the history of syphilis and unethical experimentation in the US in relation to the vast human trial of deliberately injecting infants and pregnant women with mercury, it was only a matter of time before light was shed on other hideous human trials by other journalists and activists. And when those issues come to light, certain parties wouldn't want The Age of Autism to be cited as a chief resource.
Somehow, I highly doubt that either Hillary Clinton or Kathleen Sebelius are even aware that Blaxill and Olmsted's book exists, much less that they would time their apology to the Guatemalan government in order to distract attention from the "revelations" within that misbegotten book. That anti-vaccine activists would think that they would go so far just illustrates their paranoia and undeserved sense of self-importance.
The real lesson of the Guatemalan syphilis experiment
The craziness provoked by revelations of the research misconduct of the Guatemalan syphilis experiment aside and my desire to express my disgust at not just the abuses committed by U.S. researchers but the disgusting eagerness of advocates of pseudoscience to draw entirely the wrong lesson from them, the primary reason I wanted to write about the Guatemalan syphilis experiment is that it is a new and stark reminder to proponents of SBM (like myself) that practitioners of SBM do have a history of not always being as ethically pure as it should be. Indeed, the U.S. Government was right, albeit late, to apologize to the Guatemalan government, and reparations to survivors and families would be entirely appropriate in a case like this, as is the investigation ordered by the U.S. government into what happened. It is also entirely appropriate to point out, as Robert Herriman does, that at the time Dr. Cutler's experiments were being carried out, the U.S. government was passing judgment on the Nazi doctors who carried out the same sorts of experiments, such as purposely infecting prisoners with tetanus and other agents to test the effectiveness of the antibiotic, sulfonamide? What was done in Guatemala in the name of public health was, at its core, different only in that the U.S. didn't actually round up prisoners and throw them in concentration camps to do its experiments. In other words, there was little difference.
There is one difference in how we as proponents of SBM react to news of abuses like this and the ethical questions they bring, however, and that difference is critical. The difference is that proponents of SBM must be (and, for the most part, are) advocates for ethics in all medical experimentation, be it animal or human research. SBM depends upon science and rigorous clinical trials, but never at the expense of violating clinical equipoise, subjecting subjects to risks without true informed consent, or violating patient autonomy. All too many CAM advocates and anti-vaccine advocates use ethical misadventures and abuses as nothing more than a tu quoque argument; they delight in pointing out the gross ethical violations that are committed from time to time by science-based investigators while ignoring those committed by "their side," such as Nicholas Gonzalez and the investigators performing the Gonzalez trial, Mark and David Geier, Andrew Wakefield, and the investigators performing the TACT trial. (Ironically, except for the Geiers' trial, all of these trials were funded by our tax dollars--every bit as much as the Guatemalan or Tuskegee syphilis trials.)
I have long argued that there should be no such thing as "alternative" medicine. Rather, there should be one scientific standard for medicine regardless of where it comes from, and that includes all of what is commonly referred to as "CAM." Similarly, there should be one ethical standard for all research involving human subjects. Unlike Adams and Dachel, who gleefully leap upon any scientific misconduct by medical investigators, whether real, exaggerated, or imagined, when I condemn gross ethical violations in CAM trials I condemn them because they are unethical, not because they are CAM trials. My condemnation of the ethics of various CAM trials does not mean that I will turn a blind eye when such lapses occur in trials of ostensibly science-based medicine. I will admit to using the Guatemalan syphilis study to illustrate a point, but that point is to argue for a single, unified, unequivocal set of ethical standards for human subjects research, not to try to justify "my side." Whether we're discussing CAM trials, trials of a new psychiatric drug, trials of surgery, or trials of Tai Chi or acupuncture does not matter; all that matters are treating patients according to the highest ethical values and doing the most rigorous science.
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"In yet another set of experiments, uninfected prostitutes had inoculum of the diseases placed on their cervixes before the sexual visits began."
Am I reading this correctly? They deliberately infected prostitutes with syphilis to use them as disease vectors in their experiment, and then just let them go out and spread the disease in the community?
I think you forgot to finish this clause before continuing with the sentence. "Over whether any of the options" ... do what? (Feel free to delete this comment if you fix the sentence, BTW.)
@1 It looks like - and I've heard little discussion about the treatment of these prostitutes in the story's coverage; the focus has definitely been on the prisoner's.
There's another problem with unethical experiments, just from a practical point of view. Much as with torture and confessions, how are we supposed to trust any results from unethical experiments? If the investigators cannot be trusted to follow even the most basic of ethical guidelines, how are we to trust that the results they report are not skewed or fabricated wholesale?
I don't know if you remember, but there was an anti-retroviral clinical trial to be done in Africa (Uganda?), using a drug cocktail that was know to work very well here in the States. The trial was to give one group the cocktail and the other group placebo and follow them for a while, with the endpoint being the onset of AIDS. Several epidemiologists at CDC resigned in protest because they were opposed to the trial where a known, well-working treatment was going to be denied to the placebo group. The reasoning of those who wanted the trial to go forward was that there was no antiretroviral therapy available for "those people", so that was the standard of care "over there". This was not too long ago. If I find a link to the story, I'll come back and post it.
It's probably unhealthy to do this, but I tried to imagine the experimenters' reasoning. With the criminals, I can see them thinking, well, these guys are criminals, maybe rapists and murderers (whether they really were or not), so they deserve to get a disease and suffer for a while, especially since we will cure them anyway. But the prostitutes? Desperately poor women forced into a degrading but legal job? Let's infect them with a disease and then not even bother to treat them.
If anything, that's even more monstrous than the abuse of the prisoners. Not to mention that they contributed to the spread of a potentially fatal disease in the community.
Now that's cruel.
(sorry for the sex joke, the only way to deal with horrors like this sometimes is with humor)
Guatemala is predominantly an Indio country. That had to have played a major role in the willingness of the doctors to do this (and of the white authorities in Guatemala to go along.)
Since Adams & co. like to quote medical experimentation by the government, here's another WWII story ( let's see if they read RI thoroughly): mustard gas was tested on US enlisted men to establish effects based on race ( S.L.Smith; Journal of Law, Medicine, and Ethics, Sept.2008 ). Now why would I research this particular topic? My father and several uncles( both families) were all in the USAAC/USAAF: a *female* civilian relative went to visit one of them at an airbase in the US South and inadvertently crossed an exercise field with *live* mustard gas and was taken to the hospital. No big deal: she considered it her contribution to the war effort.
Sadly, Omri, you're probably right.
Experiments like these are hideously unethical, and bad science to boot. If you're not above the board, then your results can't be trusted, and so all that misery was for nothing.
I am glad that a public stand is being made. An apology, while it can't erase the suffering that was caused, does have a place. It it is a public acknowledgment that this sort of thing is wrong and can never be tolerated.
Introduction into the spinal fluid? Into the spinal fluid??? What the freakin-fraggin heck? Not content to see whether or not penicillin prophylaxis could reduce the rate of syphilis infection after intercourse with a carrier, they had to come up with lots of random ways of infecting test subjects. ("Patients" is hardly the right word at this point.) Reminds me a bit of the crazy attempts made to prove that yellow fever was not actually contagious (in which they tried pretty much every transmission method apart from the one that would work). I haven't read their actual research, but wouldn't introducing all of these different infection methods (including ones wildly inconsistent with typical infections) make the end research even harder to use by needlessly introducing extra variables? Which means that all that extra suffering was pointless as well as unethical. Not just wrong, but doubly wrong.
Science is no arbiter of morality. Do not let the alties claim this as an example of how bad "our side" can be, even by accepting that sometimes "our side" screws up, because that means accepting that there are two sides. There aren't. There's medicine that works, and medicine which doesn't; we don't need any more distinction than that. It also means accepting unethical research as being on our side. It isn't. There is research which is ethical and research which is not. This is in the latter category, and it should horrify anyone.
While I agree that "patients" is hardly the right word, neither would I consider "test subjects" the best choice. "Victims" seems most appropriate to me.
Ethical standards evolve, so it's not really fair to judge humans in the 1940s by today's standards.
I'm looking forward to the day when humans stop doing painful things to animals for no real reason apart from "fun" (e.g., catch-and-release fishing).
One of my neighbors is a WWII veteran, and he was furious when he heard this story.
"I risked my ass to fight against people who did things like this, and I lost great friends doing the same, and now I learn that our government turned around and did the same thing?"
Interestingly, Adams as he cries,"Ethics!", inserted this "gem" in one of his recent screeds ( Sept.) about celebrities with cancer:(paraphrase) " Alt med treatments don't work *if* people first poison themselves with conventional treatment". sCAM, should be the _first_, rather than last, treatment. Adams ( and the other accomplished woo *salesmen*) first cultivate mistrust of institutions ( the government and its agencies, medicine, journals, universities, pharmaceutical companies, the media) by discussing "ethical violations" and "monetary gain" and then, offer up their own highly-profittable solution."Don't trust them! Trust *me*!! Irony of ironies, their "concern" about ethics might be their most effective sales technique. Adams runs "Truth Publishing"; Null markets himself as a "consumer advocate" and "investigative reporter"; Mercola, a doctor, tells you not to trust doctors. "Oh, what a tangled they we weave...."
We would do well to remember the background of this kind of research. It was never a case of "all the good scientists are grouped over here and those bad Nazi human experimenters are way over there on the fringes." In the 1930s eugenic and euthenic thinking was everywhere. Forced sterilizations of the "mentally defective" and even some judged "morally defective" took place in several countries including the US and Sweden. Experiments on prisoners and even unknowing ordinary patients were not particularly rare. The US military and the State Department and other bastions of society were riddled with anti-Semites and white supremacists. The Nazis weren't as far out of the mainstream as we would like to think. What they did do was to show what happens when such dismissal of other humans as inferior is taken to the extreme, besides demonstrating the bankruptcy of their racial theories.
@Old Rockin' Dave: on that note...wonder if anyone would have done anything if the Nazis had just rounded up the Jews, gypsies, etc and didn't invade any countries outside of central/eastern Europe? Would anyone in Western Europe/USA/USSR have cared about the genocide (outside of those affected and their families, of course)?
"The Nazis weren't as far out of the mainstream as we would like to think."
The Nazis acted consequently when others were only thinking of the possibilities - and apparently then felt free to do the same after the example was set.
While in europe the main target of racism was the "jew", from germany to england to spain to russia and poland, american racism had a larger target: anything that wasn't white anglo saxon, which meant anything with a skin darker than white and a language not considered english.
However, as in Nazism, it was the conviction that belonging to a "superior" race justified the human research, as it was only the suffering of a few outcasts and racially inferiors for the greater good of the superior race.
It was racial arrogance, in all those cases.
@ MI Dawn:
I expect that there would've been quite a few people who cared. Cared enough to intervene is a much more interesting question, as you note.
But I suspect the answer would most likely have been "no," for three reasons:
- The world's relatively poor recent record on such matters even since it became a general consensus that such things must be stopped.
- Old Rockin' Dave's valid point that such positions weren't as far out of the mainstream then as they are now.
- The extreme difficulty of military intervention given Germany's strength (compared to the strength disparity vis-a-vis Rwanda or Sudan, for instance).
I just can't see it happening.
@MI Dawn
The US certainly would not have done anything. It took a direct attack on US soil to get our a**es in gear.
I suppose that Nazi Germany would have been free to do what it liked to Jews & other undesirable in the Reich and the Bohemian Protectorate if German expansion had halted with the occupation of the rump Czech-Slovak state in spring 1939.
I am not certain that they would have carried out a genocide in the absence of war, however, given the relatively small number of Jews in the Reich at the time. I suspect it took the radicalizing influence of the war, the occupation of Poland, and in particular the invasion of the Soviet Union (which was consistently characterized by Nazi leaders as a no-holds-barred fight to complete destruction of one side or the other). I would conclude that it was not entirely coincidental that the Wannsee Conference in which the policies for genocide were established took place after the German military had successfully occupied the entirety (more or less) of the old Tsarist Pale of Jewish Settlement.
Also, if memory serves, Hitler had made several public statements suggesting that Europe's Jews would be made to pay if the 'Jewish-Bolshevik' conspiracy dragged Europe (read: Germany) into another world war.
Now, I may be wrong here, but if they excoriate "the government" for knowing that it was wrong, and if thimerosal, in their eyes, is harmful, then shouldn't they stop calling for a vaxed vs. unvaxed study? I mean, it would be wrong to knowingly give TCVs to kids, right?
By their logic, such a study would be unethical for the kids in the vaxed group. For the reality-based, it would be unethical to knowingly withhold effective treatment (i.e., vaccines) from the unvaxed group.
I guess it's too much to ask for consistency from them.
That said, it is absolutely unconscionable that Cutler did that. And worse that he stood by it until his death. I, for one, am so glad that regulations have been put in place, albeit late as they were, to protect human subjects. There is still a long way to go, but it is a start.
Sadly, the attitude that the research is utmost, even to the potential detriment of the subjects, is still alive and well among many people. Truly execrable.
Folks, if you want to make a difference, consider volunteering on an IRB at a local research institution. They are required by law to have at least one unaffiliated member on the committee. It involves a lot of dry reading, but you have the opportunity to (hopefully) stop things like this before they can occur. And you'll learn a lot, too.
Todd, I do wonder about the logic the Mercury Militia employ with their "vax versus unvax" study. I have asked one how the children who are unprotected from disease will be guaranteed to not suffer from actually getting the illness, and got no real answer. I mention the Willowbrook Studies, and again I get nothing in response.
It's a good thing we don't see any of that 60 years later ;)
Isn't Mike Adams a germ-theory denialist anyway? It's hard to condemn these experiments if you don't think the reasearchers were really isolating syphillis and infecting people with it.
Well, yes and no. I would argue that, even by the standards of the time, these experiments were ethically dubious at best. After all, by the standards of the time, using prostitutes for anything was considered wrong. Intentionally infecting people with an STD was generally considered wrong. Doing it without their consent was generally considered wrong. Indeed, the embarrassment and secrecy surrounding the whole project was a pretty good indication that many of the people carrying it out knew that it was wrong. If you go and read the actual paper by Professor Reverby, you'll find all sorts of quotes from people who knew about the project expressing various degrees of moral qualms, including Cutler himself.
Ace of Sevens: "Isn't Mike Adams a germ-theory denialist anyway? It's hard to condemn these experiments if you don't think the reasearchers were really isolating syphillis and infecting people with it."
Excellent point! In his "10 Biggest Health Care Lies In America" Mike Adams says this about "western" medicine:
"...the whole system is actually pathetically outdated and stuck in the germ theory of disease."
What should really have upset Mikey is that the people who conducted the experiments gave the inmates penicillin, thus setting them up for a lifetime of dependence on Big Pharma drugs. But no...in the same "10 Biggest Lies" article, he reveals that the 1940s (the period in which the Guatemala experiment was going on) were a Golden Age of medicine:
"1940's medicine was great in the 1940's. But this is no longer the 1940's, and the germ theory of disease is hopelessly outdated when it comes to the primary diseases that are striking the population today."
Adams puts his foot where his mouth is by denouncing the idea that a virus causes AIDS, or that the HPV virus is responsible for cervical cancer (there may be other germ denialist tropes of his that I've missed). So in Adams World, it should be OK to do experiments where you deliberately infect people with disease organisms, only then you have to give them "dietary supplements" to keep them from getting sick, not pharma drugs.
Could it be that the Adams Center For The Cure is doing this good work as we speak? I sure hope so! Let's all donate to the cause!!!
@7: I could almost see the mustard gas experiments as legitimate if - and only if - it was done with volunteers, who knew what was going to happen, and the amount of mustard gas was limited to the smallest possible amount. Phase 1 trials, after all, are the drug being given to healthy volunteers.
However, the problem is coercion and misleading the subjects have a very strong effect when you're seeking volunteers - from the army - to do something for the good of their country. We all have heard of things where "volunteering" in the army worked out to the sergeant ordering his men to go there and do what the people said.
So, I can see that experiments where someone is put at risk of mild injury could be ethical, but only if everyone involved is perfect saints. As experiments are run by humans, it's a dangerous door to leave open.
"I would argue that, even by the standards of the time, these experiments were ethically dubious at best."
Maybe, maybe not. Still, I'm less concerned about something that happened 60 years ago -- except to demonstrate that not that long ago such experiments were conducted and so today we need to understand and guard against the moral judgment lapses that led to such -- than that it appears that Lebensunwertes Leben is again gaining some respectability. See, Virginia Ironside On Child Suffering (on BBC) http://www.youtube.com/watch?v=0exwFr0XTro
That one article you linked to is pretty weird, Orac -- "The Legacy of Nazi Medicine" one, under the link about deliberate infections with tetanus. It basically moves from the premise 'Eugenics caused the Nazis to do what they did' and essentially moves on from there to 'therefore, abortion is bad and we should force parents to raise Down Syndrome kids they don't want' even though 'disabled people are icky and we'd laugh at them if we weren't so nice, and nobody in their right mind would want to have sex with one anyway'. (The actual quote is "Loath as we are to admit it, we also have a natural aversion to disability. Parents have to teach their children that the mentally and physically handicapped are worthy of sympathy and respect, not mockery. And for obvious evolutionary reasons, we are not instinctually attracted to individuals who are not 'healthy.'") It's so nice to know that the folks who are always screeching at people like me about "civility" have such high regard for people who are like me in other ways. Yechh.
If you click through to the front page of the organisation that publishes such material, you find lots of promos for a book that claims Obama is a socialist, an article claiming that government takeover of the US's healthcare is imminent (speaking as someone who has state-provided healthcare, would that it were so! At least then some of my uninsured friends could see a doctor regularly!), and defenses of various scurgy Popes. So it reads like a right-wing Catholic front site to me.
Some of the most vile of human endeavors can sometimes be best characterized in satire. Check out The Chicago Dope on the Guatemala story.
U.S. to Guatemala: âYou should probably get yourself checked outâ
http://www.thechicagodope.com/2010/10/06/us-to-guatamala-you-should-pro…
How you turn this into a CAM discussion is beyond me. To the point: What the Guatemalan experiment does point to is that those at the highest level of "respectable" government agencies can and will turn a blind eye to human experimentation.
Lastly, I find it interesting you quote Thomas Rivers in an apparent moment of disgust ... as he is one of the most preeminent Virologists of the 20th Century. We need not go into the connection between Thomas Francis, Thomas Rivers and the University of Michigan.
The fact of the matter is this - the people so revered on this message board, Hilary Koprowski, Jonas Salk, Albert Sabin, Saul Krugman, etc. - ALL experimented on mentally retarded children and prisoners. These experiments took place under the color of law, as Rivers suggested in his quote.
What is remarkable is the aforementioned scientists are lauded as 'heroes' versus 'criminals'.
P.S. Rivers (and Thomas Francis) knew of Salk's, Koprowski's, and Sabin's experiments.
Oh, please tell us where these researchers are revered on this blog? List the dates and titles of the blog posts.
I believe I have brought up Willowbrook more than once (look up in comments). The last time young Master Jake Crosby actually left out a very important word when he replied: "Of course, it involved injecting disabled people with untested vaccines."
Now tell us where these types of studies still occur. Also, tell us how the popular with anti-vax notion that there should be an unvax versus vax is consistent with present human subject research safety criteria? Plus, how would you protect the unvax population from vaccine preventable diseases?
Justify it how you want, Chris. It stands on its own.
That's not surprising. Most things are beyond you.
However, I'll spell it out for you. CAMsters like Mike Adams and the crew at AoA made it about CAM and anti-vaccine views when they tried to take advantage of this story to imply that their views regarding science-based medicine have any validity.
Their examples may be contemporary, fair enough. However, please address the testing of children by the creators of the Polio vaccine. You quoted Rivers and were disgusted. I share that sentiment.
Please explain how in a matter of a few years after the Guatemalan experiments it was then okay for Salk, Sabin, Koprowski, etc. to test their vaccines on mentally retarded children and prisoners?
Thank you.
Idiot, it wasn't ethical. Which is why there are several books on the subject. The ethical standards were challenged in the 1970s. Was that before or after 1955?
It wasn't, unless of course the prisoners and parents gave informed consent.
Should we deny access to effective treatments because they were developed back when medical ethics was still in its infancy? I think it better that we should learn from the errors and say "Never again" than fall for the Utopian Fallacy.
The parents of disabled children in Willowbrook did give their permission, especially since getting hepatitis was very common for that school.
The parents and prisoners did NOT give their consent.
Was medical "ethics" in it's infancy? I doubt it. Many had "moral" objections to the experiments. Many took the Hippocratic Oath. I always thought the Hippocratic Oath was to "First Do No Harm." ?
I propose we haven't learned...
So you are rewriting history? See the online book in the link I posted just a few comments above. So did the 1970s come before or after the polio studies?
Go back to the studies of Saul Krugman, Salk, Sabin, and Koprowski. What do they say?
History speaks for itself.
Ah, but that addresses a different question, Chris. Had the Willowbrook study only involved testing the vaccine, *informed* consent of the parents would have been fine. But it also involved deliberately infecting the children. I'm sure you understand the difference, and I'll freely admit that I've not studied the history of these studies.
Keep in mind that we are still working out medical ethics. 60 years from now, studies that aren't ethically controversial now may very well be looked on with disgust.
Yes, the deliberate infecting, along with the deplorable conditions at Willowbrook, was what brought on the ethic discussions in the 1970s.
I unfortunately do not remember if there was permission given at the institution used for polio testing (down fall of using library books), which is why I specifically mentioned Willowbrook. But since it is actually acknowledged in the Watson Institute, it looks like they were done with consent (especially since many of the children were there because of polio).
It is pretty certain that Koprowski did not get permission. But remember this was the Letchworth Village for Feeble Minded and Epileptic, so these were children essentially abandoned by their parents. Many of whom probably became permanently disabled due to a now vaccine preventable diseases (rubella, measles, Hib, etc).
Here's a medical ethics thought experiment.
I have a number of food allergies. One of them is to seaweed. This allergy first presented itself in 1996, with chest pains. Over time, the symptoms grew worse, until by 2006 I was exhibiting almost all the symptoms of a heart attack: chest pains, numbness/pressure radiating down the left arm, weakness, cold sweats, dizzyness, racing heart rate, the works (never the sense of impending doom, however). It would last for half an hour and then go away. It took a long time to figure out the cause, and I have never had these symptoms since then except when I accidentally ingested seaweed products (you'd be surprised what all has seaweed in it). It is probably not a heart attack, but rather the timing of my heartbeat getting disrupted - specifically, all the chambers contracting nearly simultaneously.
Now the question. I have recently regained access to health insurance. I plan on going over these symptoms with my doctor at my next visit (the last one we had more pressing issues to deal with). Would it be ethical to hook me up to an EKG while I ate a Hostess pie to see exactly what is happening?
I of course would be willing to give informed consent to such a procedure. Hey, if nothing else, I'd get to enjoy a Hostess pie one last time ;)
Feel free to discuss the ethical implications of that test.
I suggest you keep researching, Chris. Just because it has been acknowledged at the institute doesn't mean they had consent. Using that line of logic is questionable.
I certainly do not agree with the "ends justify the means" modus operandi, either. The logic you used in the first paragraph carries over to the last.
Idiot, the reason I often bring these studies up is to show that the often vaulted "vax versus unvax" studies have been done, and on disabled children. That is now considered unethical.
And remember why most of those institutions existed in the first place.
Now, Jeffry the Hypocrite, there is this article that calls for some kind of study. Going into the CVS website, and its links to Blaxill, AoA and Generation Rescue, it looks like they are calling for the very unethical "vax versus unvax" study. A study that would leave hundreds or even thousands of children vulnerable to some very serious diseases.
Again I will ask you, if that type of study was done, how would you protect the unvaccinated children? How would you protect their unborn younger siblings from CRS? How would you prevent the very real one in a thousand chance that a child will suffer severe consequences (including death) with measles? What real evidence do you have that the MMR, Hib, IPV and DTaP are more dangerous than the actual diseases? Be sure to link to a real study like the one I linked to in the second paragraph of this comment.
Now, until you answer those questions fully: you are an idiotic hypocrite with no idea of what you are talking about.
Jeffry, your silence is deafening.
So now with you new-found indignation that vax versus unvaxed studies were done on disabled children, will you use your little "VaxTruth" website to rail against AoA and friends call for their unethical study?
The parents and prisoners did NOT give their consent.
Was medical "ethics" in it's infancy? I doubt it. Many had "moral" objections to the experiments. Many took the Hippocratic Oath. I always thought the Hippocratic Oath was to "First Do No Harm." ?
I propose we haven't learned...
Still no response from Jeffry. But the spam bot echoed his comment.
Still curious how to prevent harm to kids in the unvaxed arm of their proposed study. Surely with the required number for the length of time some of them are going to get some very serious diseases.
This episode pales in comparison with the pardon given to the monsters of Japanese Unit 731 who perpetrated what could be the worst experiments on human beings in history. More than 10,000 people (mostly Chinese) perished in those experiments and the butchers exchanged the data gathered from those experiments for their freedom from prosecution from the US authorities. That all these shameful episodes happened under President Truman's watch gives you some idea of the morality standards of his administration.
According to the wiki page it disbanded in 1945, and with Truman taking over in April, I don't think he had much to do with it.
Yes, it is appalling was MacArthur giving them immunity, and having the USA gain access to the data. This has also come up with the horrible research in Germany. Which is discussed here and here.
Hi,
I walked through this museum and practically found myself in tears before it was over. The things that psychiatrists and doctors will do to other human beings in the name of "medicine" will rock you to the core.
First, I would like to point out that many illegal, unethical experiments that were done in or by the US were longitudinal studies. For example, from what I've read, Tuskegee was not about the syphilis itself. A partial cure was kept from the research victims. The intent was to study the long-term effects of the disease. My guess the focus was on the neurological degeneration which is the last phase of syphilis.
So, there were experiments in the 50s and 60s that were later revealed. We know about some from the 70s. But there must have been some that were not revealed and some of those no doubt were longitudinal studies also. And in fact, I'm one of those victims. Some of us who were victimized since the late 1960s are now in our 40s. And it continues.
In my case, there were many attempts at take-downs which appear to follow a storyline of the temporal lobe epilepsy I don't have but they hope I would be diagnosed with. This means that not only have they wrecked many aspects of my life as part of the experiment - financial, academic, personal - but they would also have the nerve to let the experimentation become overt then destroy me financially at that point so I can't get the legal assistance I need. My extreme stability in the face of unstable situations kept that nightmare from happening until more recently.
Unlike conspiratists, I have evidence, I more or less traced many of their methods, and while I'm allowed to post, my emails to the people who would be able to help are intercepted. I actually have a case, the problem is knowing which department or agency to sue. Like the conspiratists, I was sent down the "rabbit hole" of lies and internet traps on route to figuring out what this was. There are no Monarchs, no CIA, no Illuminati, no stalkers except for the sick researchers and any sociopath they can trigger along the path.
That is, not only are one's mental state, health, and finances destroyed, but we are treated like human trash - pushed into anything they think we are suggestible enough to believe in our tattered state and their decoying/deception. Hard to believe? For me it is too because I knew things were awful in this country, but I had no idea what a hypocrisy it is.
Worse, the "harassers" tried to prime a variety of things - TLE "personality aspects" for the fake diagnosis and worse, politics that run contrary to anything I believe in. If you look at the literature on psychosurgery from the 70s for example, you'll find that those against those experiments were promoting what one could call libertarian values - like free speech and privacy. Ironically some would see the experimentation as antithetical to "American values." I see the experiments as typical American arrogance and hypocrisy. I personally am more worried about *human rights* than about voting for privacy loving deregulators who will not solve this problem.
I've had it with this country, the illegal experiments and all the crimes that were committed against me in the path. I would prefer and eventually will make it to a country that is safe for me. Nobody could blame me. Especially since I have a child and she has been suffering the repercussions of this crime against humanity.
In the meanwhile, what makes the US unsafe in terms of experimentation victimization are the following:
1. The US apparently does break the experimentation rules - see claims about Guantanamo.
2. Not all US Fed agencies are bound by the Common Rule anyway.
3. OHRP oversight only works if you know who is behind the experiments and if it's a Federally supported project.
4. Organizations and institutions that are not federally funded don't have the same "rule book."
5. There is no "one" oversight clearinghouse for human subjects experimentation done by *anybody* in the US or by US based groups outside the US.
6. There has never been criminal prosecution of illegal experimentation in the US. No one has ever paid the price for this.
In my case separate felonies were committed as part of the experimentation. What are my chances for justice in this country? Zero? Point 5 percent? Yes, that's why I have to leave as soon as I can manage.
Even if you don't believe my story you should look up the 6 notes above. If people are paranoid about human experimentation in the US it's because this country has a track record almost as bad as the Nazis.
By the way, the "protocol/s" that I'm on are worse than Tuskegee and make Guatemala look like the researchers were the "good guys." It is my hope that the public is made aware of this, that there are criminal prosecutions and that there are serious reparations to me and any other victim out there. In the court of public opinion, the researchers will lose, but this is a battle that should be fought in international court. More likely I'll get my posthumous apologies 50 years more down the road.