If you live in a university town, you see them everywhere: ads soliciting your participation in clinical trials for new medications. You might assume that they're targeted at students. In The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects, Roberto Abadie, an anthropologist at the City University of New York, shows that that assumption would be wrong. In fact, many test subjects are "full-time volunteers [who] might enroll in five to eight trials a year, deriving a total estimate income of $15,000 to $20,000 in exceptionally good years." They are test subjects for a living.
Abadie spent eighteen months living in hostels and group homes in Philadelphia, getting to know the men and women who work as professional participants in Phase 1 clinical trials. (Phase 1 trials mark the first time that a new medication is used in human beings; Phase 2 and 3 trials are much larger, and take several more years to complete.) They're not an easy population to characterize. Many participants work low-paying jobs and join trials to supplement their income. Others participate full-time, and say they're "addicted" to the easy money. Some participants are chronically ill (with HIV, for example), and think of themselves as joining in the fight against their disease. In Philadelphia, almost all of the participants are African-American or Latino -- but there are also a few "white anarchists" in the mix.
What's it like to be a professional guinea pig? You might travel from one city to another to participate, getting paid anywhere from $1,200 for three or four days' work to $5,000 for a month-long trial. The more painful or invasive the trial, the higher the pay. (Trials of psychiatric drugs pay especially well.) Abadie says that participants worry about risks, but not too much -- they're used to them. Pharmaceutical firms find it easier to work with experienced participants, and participants might know one another from previous trials. One former full-time guinea pig, a man in his early thirties, describes the experience this way:
Manufacturing has been taken off, outside the country, so you are not allowed to do things anymore. They call it the new economy, the informational economy. And the other side of this informational economy is the mild torture economy, you are not asked to produce or to do something anymore, you are being asked to endure something. So, if you are a guinea pig, you are enduring something, people are doing things to you and you are just enduring it, you are not actually producing something. I feel that I am a worker, but it is not work ... it's about how much you can deal with being bored, that's the real hard part of it, the time and discomfort of being there.... I am letting people pay me in exchange for the control they have over me.
Maybe David Foster Wallace should have set The Pale King in the world of professional trial participants. (He set it among I.R.S. auditors who work in an office in Peoria, IL.)
The existence of professional guinea pigs, Abadie argues, is something new: until the mid-1970s, the vast majority of new drugs were tested on prisoners. "The fluidity and instability of the guinea pig workplace," he writes, "brings to mind the world of migrant agricultural workers." Perhaps, Abadie suggests, there ought to be a central registry for trial volunteers, or a union. But many of the participants he talks to aren't interested in organizing. "They point out that both the pharmaceutical industry and they themseles intend to make money performing clinical trials research," he writes. As far as they're concerned, being exploited is just what work is. "Working for the pharmaceutical industry may be exploitative," they tell him -- "but the same was true of their jobs driving trucks, making fast food, or sorting packages on a conveyor belt."
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