Last Week’s News: An Apology for Guatemala

I thought that the first rule for doctors was “Do no harm”? So how did this happen:

U.S. Apologizes For Syphilis Experiments In Guatemala

That was the headline that flashed in my timeline last week…at the time I thought it was some kind of hoax.  Seriously??? WHOSE idea was this? The Guatemalan Study took place from 1946-1948:

researchers infected nearly 700 prisoners and mental patients in Guatemala with syphilis. Prostitutes with syphilis were used to infect male prisoners. The researchers deceived the study subjects about the experiment and concealed the facts of their infection.

The study subjects were treated with penicillin afterward, but Reverby [the woman who unearthed records of the study while doing research for an unrelated purpose] that it’s unclear whether they were cured. Some didn’t get what would have been considered adequate doses of the antibiotic.

Of course it brought to mind the infamous Tuskegee Study conducted from 1932 – 1972  (that’s right for FORTY years) on poor black farmers in the rural southern  United States.  Check out a timeline here.  The infected men were told that they had “bad blood” and that they were being treated for “bad blood” not syphillis…in fact they were not being treated and some were actually deliberately infected with syphilis.  After Tuskegee was “discovered” hearings were held by Congress and by 1974 the National Research Act was passed.  The NRA required that Institutional Review Boards be established for medical research and that prospective participants give informed consent to participate in studies.

Also makes me wonder about the posters I’ve seen on the D.C. Metro asking for participation in one study or another; one uses the picture of a black American woman and a blurb about her work in medical research, apparently as an inducement for other black people to participate.  I’ve often heard people say that the Tuskegee Study has bred mistrust between many black Americans (maybe the older generation specifically?) and the medical community, and that it is responsible for a fear and unwillingness of many of those who mistrust to go to the doctor or seek treatment for “regular” ailments.  One web source I found notes that

The initial aim was to follow untreated syphilis in a group of black men only for 6-8 months and then follow up with a treatment phase.   Nevertheless Dr. Clark agreed with the deceptive practices suggested by his deputy, Dr. Vonderlehr, and complained about how costly the treatment aspect of the study was.  Clark wrote a colleague in defense of the use of deception in calling the spinal taps “treatment”, “These negroes are very ignorant and easily influenced by things that would be of minor significance in a more intelligent group.”

O.  OK.  (Even though I know of the history of racism in the United States it still startles me to read things like this.  It is just shocking.  Even more shocking to realize that some may still subscribe to this sort of thinking but have simply gone underground with their expressions.)

During his tenure, President Clinton apologized for the Tuskegee Study and a Tuskegee Health Benefit program exists to treat the descendants of that study’s participants.  But I was surprised to read that the Tuskegee Study had its roots in something called the Oslo Study, which followed the course of syphilis in untreated white men.  Apparently after the Oslo Study was published in 1928 some physicians in the United (and perhaps elsewhere, at this point who knows for sure?) thought that it would be a good idea to study the course of the disease in black people.  Go figure.

What will this latest U.S. apology do, if anything at all, to the relationship between black Americans and the medical community?  There is already this article about the Guatemala Apology giving weight to claims within the black American community and by some commentators that “U.S. officials developed the AIDS virus for the purposes of bio-warfare and population control.”

I have no clue what the Guatemalan government will do in response to this revelation and apology by the U.S., especially since as Secretary Clinton and Secretary Sebelius acknowledge “[t]here’s no statute of limitations on the violation of human rights in medical research” …but surely an apology seems won’t be enough? I don’t read Spanish so I can’t say precisely what Guatemalan newspapers are reporting but I did use Google to translate the front of two papers that seems to indicate that it’s not a dead issue there

Screenshot of Diario de Centro América, a Guatemalan newspaper (translation by Google’s translator tool)

and

Screenshot of El Periódico, a Guatemalan newspaper (translation by Google’s translator)

To me, these kinds of medical studies are more than unethical, they’re immoral.  They’re no better than what the Nazis did to millions of people during World War II.  I’ve been to Auschwitz and to see the mounds of human hair shaved from heads of prisoners and meant to be used to make coats for soldiers et al is something I’ll never forget.  Neither will I forget the mounds of doll carriages, baby shoes, toothbrushes, and other normal human trappings that were ruthlessly collected as cattle car after cattle car filled with people (mostly Jewish) arrived.  I still recall a professor of mine tearing up when we were shown pictures of the children (especially twins) who were also used in experiments…he is the father of twins.   I have walked through a crematorium.  I will never forget it.  At least for that human-created nightmare we have actual physical remnants +books and some of people who survived it to remind us what ills humanity is capable of…like this

Picture by me of one of the many signs explaining what happened at Auschwitz. This one explains some of the human experiments that were conducted.

With the Tuskegee Study and the Guatemalan Experiments there are no such physical “mementos”  and not many people left to tell their stories. It’s like these studies’ participants are being victimized two and three times over.  And 1932 and 1946 are not that long ago.  What the hell else is hidden in the annals of medical history?  I dunno…this apology and what it referred to left me numb. Of course not all medical research was or is conducted  as these studies were.  But good Lord, man to think that trained medical professionals could engage in this sort of activity is just…dumbfounding.  I have no witty or provoking closing thoughts, just a question: Now that apology has been issued and things are out in the open, what happens next?

edited October 6, 2010 for corrections to grammar

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4 Responses to “Last Week’s News: An Apology for Guatemala”
  1. shumpy says:

    Unfortunately there are many more cases of immoral research practices in other ‘compromised’ groups such as children and those with mental illnesses. Humanity is depraved.

    This is why the institutional review board was created. IRBs should exist at every research institution (universities, hospitals, etc) and all studies involving human subjects require review – other studies do too but at different levels. The IRB reviews research procedures and is responsible for approving studies that are ethical. They also ensure that the researchers are very clear to potential participants about what is happening in the study and the potential harm and/or benefit of participating. Once study is approved the IRB monitors the study periodically (for experiments there is usually another group that does this more often) and participants can always remove themselves from the study or call the IRB at the relevant institution for any reason. Studies have also been stopped if at anytime the participants are thought to be at risk that was not previously explained to them. I completely understand why someone would be suspicious of medical/health research and the medical community but I recommend informing oneself rather than staying away. Ensure the research being marketed provides you a consent form with adequate information about the study, how to leave the study, how to contact the investigator and the IRB, and which IRB has reviewed and approved the study. I say this because sometimes I read research papers today and wonder about the ethics of the procedures (especially when I see the study has been conducted in a community overseas or one that is somehow ‘compromised’).

    Research results inform medical and dental treatment, and health services and policy and as such I think it is very important for persons of minority communities to be involved as participants in research studies. Also, many black people (and I suppose other minorities) stay away from the health care system to their own detriment. Nothing can replace an informed decision. Unfortunately it seems as though the ugly tentacles of prejudice still strive to hold us back.

  2. Great post!
    Thank you for posting this.

    Regards,
    Jack from Hearing Aid Reviews

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