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One of the big science stories recently was about US doctors and scientists infecting Guatemalan prisoners and mental patients with syphilis to carry out research. This made me realise that scientific and medical ethics is something that I’ve neglected to really comment on. I’ll be trying to rectify that and this post is part of that effort (although it doesn’t deal with anything as unethical as the Guatemalan experiments).
I’m currently reading “Phantoms in the brain” (by VS Ramachandran and Sara Blakeslee) and the description of the treatment received by one of Ramachandran’s patients had me pondering some questions about medical ethics.
The case involves a patient who Ramachandran diagnoses with Capgras syndrome. This is a disorder in which a person believes that a close friend or relative has been replaced by an identical-looking imposter. The patient in the book believes this of his parents following a head injury.
Having made his diagnosis, Ramachandran does not tell the patient “because I wasn’t sure how he’d react”. However just a few pages later we read the following poignant passage:
“Arthur’s most serious problem, however, was his inability to make emotional contact with people who matter to him most – his parents – and this caused him great anguish. I can imagine a voice inside his head saying, ‘The reason I don’t experience warmth must be because I’m not the real Arthur.’ One day Arthur turned to his mother and said ‘Mom, if the real Arthur ever returns, do you promise that you will still treat me as a friend and love me?'”
Given Arthur’s distress is it really ethical for his doctor not to reveal his diagnosis? The news that there are others who share this problem with him could help ease that distress.
As we are not his doctor and don’t have access to the full facts of the case there is no way for us to know. Nevertheless it would have been good if the book had answered this question for us rather than leaving us speculating.
Slightly late to this, but about a week ago the US press started carrying stories about some highly unethical experiments carried out in Guatemala. US medical researchers infected Guatemalan prisoners and mental patients with syphilis (without their consent) and went on to test whether the then new wonder drug, penicillin, would cure them.
This has been covered in-depth over at science-based medicine, so I won’t go into too much detail here.
One thing that caught my attention was that John C Cutler was the lead researcher on the experiment. Cutler went on to work on the infamous Tuskegee syphilis experiment, which ran into the ’70s. This experiment tracked hundreds of poor black men with syphilis to study the long-term effects when the disease is left untreated.
The study started before the advent of antibiotics made effective treatment of syphilis possible. An argument could be made that, given there was no effective treatment at the time, the study was not unethical at the start. However my impression is that the subjects were never told that they had syphilis and therefore some men went on to infect partners who might have avoided infection had the men known of their infection.
Moreover this fig leaf of justification falls away completely once you realise the study went on for 25 years after penicillin became the standard treatment for syphilis. Doctors and scientists lied to the men involved to prevent them receiving treatment. Indeed the study only ended after a whistleblower went to the press to have the study stopped (after failing to persuade his superiors to do so).
Unbelievable Cutler was still defending the Tuskegee experiment into the 90s. Since he is dead we can never know what justifications he would have come up with for the Guatemala experiments. Looking back over his career one is forced to the conclusion that the only thing distinguishing Cutler from those who ended up swinging at the end of a noose in Landsberg prison was not his ethics but that he was born American.