POC and the Politics of Medical Research

Poor, black families used as test subjects for sludge. This was done in the late 90’s. They didn’t tell any of the people in the study what exactly was meant by the term bio-solid, nor did they tell them of the potential health risks. I assume most people are aware of what happened at Tuskegee and that in the aftermath the government took another 25 years to apologize for what had been done to these men and their families. I wonder though if people are aware of the experiments done by Dr. James Marion Sims (acclaimed as the founder of modern gynecology) on females slaves, or by Dr. Orlando Andy using lobotomy on young black males in the 1960’s as a “therapeutic” treatment for institutionalized black children. He wasn’t alone in his beliefs, in fact similar experiments were conducted on adult black males that were incarcerated during the Civil Rights Movement. Funny how this treatment wasn’t considered therapeutic for white criminals.

There was a lot of uproar over Reverend Wright’s comments about AIDS being deliberately engineered by the government, and in the absence of historical knowledge about the U.S. government’s willingness to experiment on POC it does sound far-fetched. But, once you start looking at the treatment of POC in medical experiments you begin to understand why so many POC don’t trust the government to have their best interests in mind. There were several initiatives devoted to the sterilization of WOC. This went on for decades and was done in conjunction with locking away children that were deemed to be “feeble-minded” in an effort to “improve” the population via eugenics.

In fact after the apology was made for the Tuskegee experiment in 1997; it was revealed that children in New York were being used as guinea pigs in a study using a (now) banned diet drug fenfluramine (a component of the infamous Fen-phen) to investigate whether or not brain chemistry could indicate a predisposition toward violence or other criminal behaviors. There was no medical benefit for these children. In fact taking them off the ADD medication they were on in order to perform this experiment could have adversely affected their quality of life.

It would be nice to claim that these abuses are a thing of the past, but there was a range of studies done in at least 7 states through as late as 2005 using HIV infected foster children to test AIDS medication. For some kids the research might indeed have helped them. But there was at least one study where

“…researchers reported a “disturbing” higher death rate among children who took higher doses of a drug. That study was unable to determine a safe and effective dosage.”

They sought permission to conduct these studies from the local agencies, and then didn’t bother to adhere to even the basic protocol of ensuring that these children had independent advocates to oversee their treatment. They went forth with these experiments even though they knew they were giving them medications that had already proven to be toxic for some adults.

Harriet Washington’s book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present that goes into much greater detail about the individual experiments that she’s been able to uncover, but I’m sure (especially given the most recent example) that there are still experiments being done in America that put the health of POC at risk. That doesn’t even touch on the experiments going on in Third World locations. Does that mean that AIDS was specifically cooked up in a laboratory to infect POC? No. But, the way in which POC have historically been treated as guinea pigs in experiments of dubious scientific value, and the way in which the bodies of COC have been commodified so that even their parents aren’t told of potential risks is enough to make anyone look askance at their government and wonder just what they haven’t been told this time.

Karnythia is a writer, a historian, and occasionally a loud mouth. In between raising hell and raising kids she usually manages to find time to contemplate the meaning of life as a black woman in America. Her posts on any topic can be found at her Livejournal.

16 Responses

  1. Thanks for writing about this. It is a long and sickening history that gets omitted, like so much else, from the standard narrative of medical “progress.” What’s even worse is that it still goes on, and we pretend like it doesn’t, like we’re over it, like everything is good now.

    But then there’s Trovan and Pfizer, and the AIDS study that you linked above, and so much more… If anyone is curious, Sonia Shah’s book, The Body Hunters, exposes a lot more of these sorts of crimes going on today in developing countries. I think what’s almost as appalling as the crimes themselves is the fact that so few people actually know or care about it… I mean, I think people know about Tuskegee, but don’t make the connection between that and what’s going on today. They don’t realize that the history doesn’t just disappear.

    I didn’t know about a lot of those experiments you mentioned. Truly sickening. Thank you for the info.

  2. I knew about Tuskegee, and had some vague knowledge of the sterilization stories and the lobotomies, but the rest of these are news to me. Sigh. My immediate reaction to Rev. Wright’s comments about AIDS was that 1) it was going to cause an uproar and 2) that while he may have been wrong about this one, he certainly had cause to wonder, given the history of the US government in this sort of thing. I’m rarely surprised by (though always disturbed by) the average American’s lack of knowledge of even recent history, especially when it comes to underprivileged groups.

  3. HIV wasn’t engineered by the government to get rid of anyone. Politically I find the idea not impossible, but looking at the virus it looks like a product of evolution, not creation in a laboratory. nvCJD probably wasn’t but might have been–last I heard no one was quite sure where it came from. There is an evil…I hate to call it a conspiracy because “conspiracy” implies secrecy and no one seems to be bothering to keep this a secret…an evil non-conspiracy being perpetuated involving blacks and HIV, but that isn’t it.

    The real evil being done involves “pro-life” groups that restrict funding to organizations that might otherwise help people in Africa learn about safer sex and have access to condoms so that they can do something with that knowledge. And experiments in prevention of HIV in newborns with placebo controls. (Which isn’t really experiments because we KNOW what happens when you don’t do anything: the babies get HIV. And we know what happens when you give AZT: fewer get HIV. So what the frig was the point of the experiment was what?) And minorities being less likely to get up-to-date treatment for HIV because they don’t have insurance or are deemed “unreliable” and therefore unlikely to benefit from the meds (which must be taken obsessively to be effective, it is true).

    It all raises my blood pressure, particularly because of one last, ironic twist: NOT being involved in experiments also ends up killing minorities at times. Yes, I know, but bear with me for a minute. Some diseases are flat out untreatable. It has been shown that people with such diseases go on clinical trials they tend to do better than those who do not. The guess as to why is that even if the drug being offered is ineffective, the more careful monitoring and adjuvant care help the person somewhat. And doctors sometimes simply give up and do not try to enroll minority patients on clinical trials because they assume that they will refuse. Heh, given the history, any reasonable person would think twice about participating. But that’s the patient’s option, not the doctor’s: the doctor should offer all the options, outline the risks and benefits for each and let the patient decide. Not limit the patient’s knowledge of the options based on the doctor’s assumptions about what the patient would or wouldn’t want.

    The whole situation is utter crap and I can’t believe that people are pulling stunts like the ones in the links in the 21st century. But they are. We’re supposed to have rules to protect people from unethical experimentation. Where the heck were the IRBs when these experiments were being proposed? What was the NIH thinking funding them? It’s insane.

  4. Great, massively educational post. Thank you.

  5. “There was a lot of uproar over Reverend Wright’s comments about AIDS being deliberately engineered by the government, and in the absence of historical knowledge about the U.S. government’s willingness to experiment on POC it does sound far-fetched. But, once you start looking at the treatment of POC in medical experiments you begin to understand why so many POC don’t trust the government to have their best interests in mind.”

    Absolutely true. I hadn’t even considered this; thank you for bringing it up.

    As far as the article, I remember learning about Tuskegee in my own classes on research. Disgusting that this is still going on, though I shouldn’t be surprised. Does anyone know where the Board set up to review these kinds of experiments is in all this? Are they being informed of the process and ignoring the questionable ethics, or being misinformed, or not doing followup on the experiments, or what?

  6. I am happy you wrote about this because I was going to this morning. This was a shocker. They are lucky that no harm was done but it’s amazing how many of these things that they get away with.

    Thanks for writing about it!

  7. Humans created AIDS. It was the biproduct of faulty polio vaccines created from chimp blood who have the monkey variety of the disease. The virus mutated and was able to be passed on to humans. If you do not believe this, try finding a case of the AIDS virus before the polio vaccine was created.

    http://www.dailymotion.com/video/xpzly_origins-of-aids

  8. this is incredible, these scientists are abominable…. i have always thought that the medical institutions take to much blood whatever and use the balance left from testing as they see fit … being from the other side of the atlantic i have not heard of these cases…
    i do know the british experimented on the poor and incarcerated in victorian times over here but am not sure of the cases since then
    i am going to get a copy of ‘medical apartheid’… and then see what i can dig up over here..

  9. Not to deflect the discussion, but I wonder, has anyone ever advanced the theory that AIDS might have been created (or spread) to target homosexuals? Remember that AIDS was originally called GRIDS (Gay-Related Immune Deficiency Syndrome) and also reflect upon the ongoing pseudo-medical efforts to find a ‘cure’ for homosexuality. I’m not saying this makes any sense, at the end of the day neither really does the idea AIDS was created to target POC. All I’m saying is that, perhaps, this perversion of the art of healing runs into areas other than racism. I still, in 2008, am not allowed to give blood because I am a bisexual male. I can marry a man (hurrah UK), but I cannot give blood. I also can’t help but feel that this problem is far worse in the United States because of your ridiculous health-care system. A country that sees more merit in bombing poor brown-skinned folk than caring for its own sick is not much of a country, in my honest opinion.

    The ongoing nature of these medical experiments really is appaling though. Some of this stuff seems more fitting for the laboratory of Josef Mengeles than for a modern democracy. I wish I had some sort of trouble believing these reports, but I don’t. And people still turn round and says racism is a problem of the past.

  10. [...] she is, and several others just be disrespected. I have read the news and my heart is breaking over and over. The inhumanity is [...]

  11. I have mixed reactions to this post. My background is scientific research – cell biology research at a university and not clinical research. I have also personally been a guinea pig several times for various clinical trial research studies. I now work in public health, specifically dealing with immunizations.

    I have seen first-hand many many times how the media and “lay” public distorts actual scientific fact to support outrage. I have heard things and seen quotes printed in respectable news publications that are just downright innacurate and based in a complete lack of understanding of the actual science being discussed. Because of this, I tend to read anything regarding science in a non-scientific medium with caution. And I encourage others to do the same. Journalists are usually not scientists. Outraged parents are usually not scientists. Therefore, there is a fairly high probability that they will misread information and have an inaccurate perception of what is actually happening.

    Even taking this one step further, I do not even feel comfortable making a judgement about the soil study linked at the beginning of this post because it’s a type of science with which I am not familiar. And I really do not believe I can make any accurate judgement based on what a journalist believes to understand about this scientific study.

    As a second point, I would like to discuss two other things. One is the availability of people for research studies and the other is the attitude of the scientists toward the research subjects. Most research subjects are going to be from a low economic class. Money or free medical care are really the only two incentives that a research study can use to find participants. Most people don’t feel an altruistic need to help further scientific research enough to be inconvenienced by participating in a study without those other motivators. So, you find research subjects that need the money enough to subject themselves to clinical trials or need the medical care enough to subject themselves to clinical trials. This generally leaves you with lower economic classes or people suffering from catastrophic diseases that modern medicine can’t cure, yet. Or you have the combination in people that have catastrophic illnesses that they can’t afford to treat.

    Unfortunately, many researchers I have encountered have a distanced attitude about research subjects. It may be a protective mechanism. I personally ended up leaving the field because I couldn’t take all the mouse-killing and I never developed a detatched-enough attitude. But I have heard researchers talk about terminal cancer patients as if “well, they’re going to die anyways, lets at least get some benefit out of it with a clinical trial for drug toxicity.” I find this appalling, but how else do you test for drug toxicity in humans? There really is no other way to do it. And testing for drug toxicity is how you find the dosage for a drug where it stops being beneficial and starts harming the patient. Nearly all drugs have this point and if you don’t know what it is, the drug isn’t safe to use. Really, there are no easy answers here.

    Okay, what’s the point of this comment? Yes, there are many examples of unscrupulous scientists out there. Yes, there are going to be racists, sexists, heterosexists, ageists, and every other kind of bigot among the population of “scientists” just like there are with every other occupation group. Yes, that is a problem to address (hopefully through holding IRBs accountable for not doing their jobs). But I just want to encourage people to think a bit more critically about these types of stories. For the reasons at the beginning of my comment and for other public health reasons, contributing to a general distrust and outrage against the scientific and medical community is not necessarily a good thing.

  12. I wrote a longer comment to this effect before, but the spam filter ate it or something so this may turn out to be a duplicate.

    Anyway, about institutional review boards: All IRBs (in the US anyway) are required to have at least one member who is not affiliated with the institution and not in the medical profession. This person should represent the community or lay person’s interests. If anyone is interested in volunteering, most hospitals are interested in to desperate for volunteers for their IRBs. Though a word of warning: they’re generally desperate because being on an IRB is BORING. You’ll spend more time making sure that all the forms are filled out correctly than you will questioning unethical research. Nonetheless, it’s a concrete thing any interested person can do to help ensure better research practices.

  13. [...] article from angry black woman POC and the politics of medical research. Unfortunately, this topic is still [...]

  14. thanks for this thoughtful post and the thoughtful comments it inspired.

  15. [...] such a horrible thing to say, how good I have it. Because I don’t have to incorporate a long and sordid history of unethical (to say the least) medical experimentation on my racial group into my mindset. My single disability only requires really strong reading [...]

  16. Quietus, alot of times when people question if AIDS was created as a form of biological warfare-they specifically say they believe that it was created explicitly for the purpose of reducing both the gay and black population.

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