A portrait of a woman with a distorted facial perspective.
What’s wrong with it? Nothing actually, if the painter were aiming at imitating a Picasso or Braque cubism style. Unfortunately, that is not the case, as the painter is aiming at representing reality “as it is” -whatever that means- and, most of all, at selling his portrait to the woman and her husband. Who -it goes without saying- are not satisfied at all with the distorted proportions cubist-like painting. The artists receives a punch in its face, resulting in a broken nose, and an intimation to turn the check back in immediately.
What I just described is the beginning of the episode “Adverse events” of House MD series # 5. In this episode, Gregory House and his team first speculate that the patient has a brain tumor -which would be responsible for his facial agnosia, or his inability to recognize faces- but the diagnosis proves wrong as the results of the brain CT scans turn out to be negative. After excluding brain tumor, the differential diagnosis second guess is that the patient must be on drugs. As the patient results clear at drug tests, House -in his usual abductive way- jumps to the conclusion that he must be “on drugs he’s not been tested for. He’s a guinea pig”. House’s guess turns out to be, obviously, right. The patient is enrolled in three clinical trials at a time, and the unknown drug interactions among the three drugs are killing him.
Why is this House MD episode relevant for my work on clinical research ethics ? For at least two reasons: the first being that House MD is my favorite TV series character -as those among you who know me in person know very well!- , the second being that House MD episodes are almost always based on reality, even if often they tend to invent wildly on it, and this episode does is no exception.
Can people really be in three clinical trials at a time? The answer is yes, they can, as shown by the recent book by Roberto Abadie . In his book “The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects” Roberto Abadie, medical anthropologist born in Uruguay, documents the reality of the “professional guinea pigs” community based in Philadelphia, PA. You may not be aware of it -as I wasn’t either before reading this book – but nowadays a career can be made out of participating in one Phase 1 trial after another, or even in more than one Phase 1 trial at a time. This is possible as companies do not share information about participants, who are willing to enroll in more than one study at a time to make more money. This kind of behavior may not only compromise their health, but also compromise the results of the study, due to the unknown possible multiple interactions among the drugs, as exemplified by House MD episode “Adverse events”. If patients drop out of trial before completion, they do not get paid. It is quite obvious that this kind of payment per se, without even brushing upon the ethics of paying healthy participants, is morally problematic, as it incentives people to stay on the trial, even if they are experiencing severe adverse events.
Who are the participants? They are often young males in their 20’s and 30’s (the percentage of women making a profession out of guinea pig is much lower, with reasons that need to be spelled out, but one among these being that pharma companies prefer not taking the risk of having a pregnant woman among the participants, not because her health or the health of the fetus may be compromised, but because if she is lying about her pregnancy there’s the risk of confounding the results of the study) who are uninsured, and take the opportunity of being in a trial also to have their health checked (even if of course if something wrong is found, they have to paid out of their pocket).
I did a little google research and there is plenty of videos out there where participants tell their stories, which unanimously describe the “guinea pig profession” as a better paid, and easier, job “than working at Mac Donald’s”, as watching TV and reading magazines in the spare time between a blood test and a CT scan seems to be much more comforting than standing for 8 hours a day serving burgers in a crowded and noisy place. Here’s one video, for example, where professional 21 yo guinea pig Alex Spencer tells his story.
To note, there is also a threshold retirement age for this kind of job, which is 45 yo. Don’t ask me what these people do after that, because I do not know and there are no data published out there on this subjects, at least to my knowledge. Participants are for the most part well aware of their choice and often are self-ironic about it. They even give themselves nickname as “King’s Rat” and write their experience on a blog and journal called “the Professional Guinea Pig”. To conclude this brief excursion into the professional guinea pig world by making a full circle, I’d like to go back to the beginning and the House MD episode. Here’s the transcription of an extract of a conversation between House MD and one of his coworkers, Kutner:
Kutner: It’s ridiculous that people take potentially life threatening drugs for money
House: Just to shorten that discussion, People should not be testing drugs because they are desperate. But, people won’t test drugs unless they are desperate. We need drugs to save children and puppies ergo we need desperate people ergo welfare kills sick children.
What’s faulty (if anything?) in this reasoning? Comments and feedback are welcome!
Abadie, R. The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects
Duke University Press. ISBN 9780822348146 and 48238.
Published 25 October 2010
Inglee, J. Just Asking: Paying Humans to Be Drug Test Lab Rats, Take Part News and Blogs, December 2010.
McHugh, J. Drug Test Cowboys: The Secret World of Pharmaceutical Trial Subjects. Wired magazine: issue 15.05.