I recently read up on the Tuskegee Experiment, and it was really weird. (If you’re not familiar, it was an experiment run from 1932 to 1972 to study the effects of untreated syphilis on African Americans in which they pretended to treat 600 poor, male, African American share croppers for decades, resulting in over 100 of them dying from an entirely treatable disease.) What’s weird about it was not that it was cruel. Human beings are very frequently cruel. What’s weird about it was that it was both cruel and scientifically pointless. It’s not surprising when people do unethical things for some sort of benefit they could not get otherwise. It is very surprising when people do unethical things for no possible benefit to themselves or anyone else.
So I looked a little further, and like so many things that don’t make sense, it was the way it was because of a strange set of historical events which changed it repeatedly until it kept going because it was already going, but wasn’t something anyone would ever have started on purpose. Even more curiously, it was kept up for forty years in large part because no one would ever do another study like it again (since it was utterly pointless).
Let me explain.
(Note: I’m just using the Wikipedia page on the Tusgekee study as my source for this; take it with a grain of salt but it’s good enough for my purpose here.)
The Tuskegee experiment was motivated by a 1928 retrospective study in Oslo, Norway, called the “Oslo Study of Untreated Syphilis.” It looked at several hundred white males in various stages of untreated syphilis and documented their symptoms. This is medically important in a disease which can present differently over time (syphilis takes a long time to kill you, if it does)—if a doctor is looking at a patient and only is aware of the symptoms at one stage of the disease while the patient is at a different stage, the doctor could easily mis-diagnose the patient as not having the disease.
So, doctors had this very useful information for treating white patients, but is it also applicable to black patients? Perhaps they present differently (i.e. have different symptoms, or at least different severity of symptoms). There are some diseases more prevalent in white people than in black people, and vice versa; there isn’t really a good reason to assume that the two populations are identical. To do a good job treating black people who have the disease, doctors really would benefit from evidence that they present the same way as the white patients in the Oslo study do. (There are issues with lumping all people of European descent together as one homogeneous “white” population, just as there are with lumping all people of African descent together as “black”, though in the latter case most black Americans in the 1920s came from a small region of Africa so it wasn’t quite as bad.)
So far, this is fairly reasonable given the state of medical science in the 1920s. Now it starts to get a little iffy: the researchers at the US Public Health Service at Tusgekee decided to conduct a prospective study in order to complement the retrospective study from Oslo. This is not at all, ethically, the same thing, since not treating people and finding out the symptoms they had before you treated them are very different. Their reasoning was that the study participants, being poor share croppers, were unlikely to ever get treatment otherwise; thus it was a trade of six months of not treating them (during which time they would not have gotten treated otherwise), and after which they would give the participants treatment. Not great, but in a slow-moving disease, this could be defensible if informed consent was obtained (it wasn’t).
Something else to consider, here, is that the treatments of the time were mostly ineffective. They consisted of things like arsenic-based treatments like arsphenamine and mercury-based ointments. Penicillin, the actually effective treatment for syphilis, would only be discovered in 1928 and the technology to refine the compound into a medicine was only developed in 1940. (The first proof that it could cure a disease was an eye disease in 1930 in a laboratory setting.) So part of what needs to be considered was that in 1928, the treatments that they were temporarily withholding weren’t actually all that effective, anyway.
Somehow or other this became six months to one year, which was still in the realm of defensible if informed consent had been obtained (which, again, it hadn’t). However, this is where things really start going off the rails. Before the conclusion of the study when they were planning to administer the standard treatments they lost their funding and could not afford to treat the patients. At this point Taliaferro Clark, head of the USPHS, decided to extend the study without treatment (which involved pretending to treat the participants). He resigned before the study was actually extended, however. It’s a bit unclear (just from the Wikipedia page) who took over extending the study; various people contributed.
With the advent of penicillin as a safe and reliable treatment for penicillin, the entire study became even more pointless than it was at the start, but continued for much the same reason: it would never be possible to get this data again. It would never be possible because there was absolutely no point in getting the data and it was horribly unethical to get it, but that was beside the point. The fact that something was going on that could never be restarted made the people involved feel like they needed to keep it going, since once lost, it was lost forever. True, it had no apparent value, but I suspect they figured that perhaps one day someone would find the value in it that they couldn’t see right now.
In the baptismal vows a catechumen makes (or their parent makes for them at infant baptism), there are the questions: “Do you reject Satan? And all his empty promises?”
It’s interesting how good an example the Tuskegee study was of an empty promise.