Research

The Mild Torture Economy

In his mock documentary Take the Money and Run (1969), Woody Allen plays the ambitious but remarkably unlucky bank robber Virgil Starkwell. He never makes the FBI’s Ten Most Wanted because, after all, it all depends on who you know. But he does manage to shave some time off one of his prison sentences by volunteering for medical research. He survives the experiment. There is one side effect, however, as the narrator explains in a solemn voiceover: He is temporarily transformed into a rabbi.

This sequence came to mind while reading The Professional Guinea Pig, by Roberto Abadie, just published by Duke University Press. “An estimated 90 percent of drugs licensed before the 1970s were first tested on prisoners,” writes Abadie. “Prisoners were in many ways a perfect population for a controlled experiment. Because they had similar living conditions they provided good control groups for clinical trials, while the financial and material benefits ensured a large supply of willing and compliant volunteers.”

Only in 1980 did the Food and Drug Administration ban the use of prisoners for medical research. Their circumstances made a mockery of informed consent. (Especially in Virgil’s case. “Prisoners received one hot meal per day,” the narrator explains: “a bowl of steam.”) But the demand for experimental subjects for biomedical research had to be met somehow. And so there has emerged the new regime of power and knowledge analyzed by Abadie, a visiting scholar with the health sciences doctoral program at the City University of New York Graduate Center.

His book is an ethnographic account of the subculture of “paid volunteers” recruited to serve as subjects for pharmaceutical testing -- with a particular focus on what he calls the “professionalized” guinea pigs who derive most (or all) of their income from this work. Volunteers receive “from $1200 for three or four days in less intensive trials,” according to Abadie, “to $5000 for three or four weeks in more extensive ones.”

Actually the term “work” is somewhat problematic here. The labor is almost entirely passive. Half of it, as Woody Allen once said about life itself, is just showing up. You are weighed and your blood taken, and there might be a few other tests, along with quite a lot of boredom. (One of Abadie’s informants describes it as participation in “the mild torture economy.”) Some of the guinea pigs fall back on it as a supplement to “low-paying jobs as cooks, construction workers, house painters, or bike messengers.” For others, it is their sole source of income. They enlist for up to eight rounds of testing per year, earning “a total estimated income of $15,000 to $20,000 in exceptionally good years.”

Higher rates of pay are available to those willing to endure unpleasant procedures. Likewise, there is a premium for testing psychiatric drugs -- though the considered opinion of old-time guinea pigs is that you just don’t earn enough to make it worth letting someone mess with your brain chemistry.

Abadie’s description of the guinea-pig milieu -- based largely on interviews with a number of them living in a bohemian neighborhood in Philadelphia -- focuses on how they understand the risks involved in making a living this way, including their preferred means of recovering between rounds of exposure to “phase I” testing. (That is the term for clinical trials in which pharmaceuticals shown to have low toxicity when given to animals are tried on human subjects.) Various dietary regimens are thought to have a purifying effect. An informal network keeps participants updated on new opportunities in the human-subject market, and there used to be a zine called Guinea Pig Zero that still has a web presence.

Most of Abadie’s informants are also members of an anarchist counterculture that prides itself on remaining outside corporate capitalism. And making your living as a guinea pig is certainly different from joining the rat race. But the “mild torture economy” is well integrated into the larger and more literal economy. Testing is a necessary stage of pharmaceutical development, with some 80,000 phase I trials -- each involving 30 to 100 human subjects -- being run each year. The development of a pool of reliable but poorly paid “volunteers” (consisting mostly of young men who, as Abadie puts it, “use their bodies as ATMs to fund their lifestyles”) is one sign of the effect of deindustrialization on the labor market.

And the effect of becoming dependent on guinea-piggery as a source of income is that it creates an incentive to ignore the question of how exposure to experimental pharmaceuticals might affect you over the long run. “Beginners are more worried about risks than professionals,” notes Abadie. “Maybe this reflects the general population’s anxieties about biomedical research and its well-publicized abuses. Volunteers’ initial uneasiness focuses on the unknown effects of the drugs, but it also reflects a discomfort with a procedure they do not yet fully understand…. Some volunteers mentioned that they were somewhat concerned about developing cancer in the future.”

Not so, evidently, with those who had been through the process a few times: “Dependency on trial income, trial experiences that have not exposed them to side effects, and interactions with more experienced volunteers convinces newcomers that risks are not to be feared.” Just drink a couple of gallons of unsweetened cranberry juice and it’ll just wash the corporate technoscience right out of your system….

Meanwhile, the FDA “inspects less than 1 percent of all clinical trials in this country,” writes Abadie, and paid volunteers lack the resources to challenge any abuses they may suffer.

Trials in phases II and III -- when a drug is tested on patients suffering from the condition it may help treat -- draw on a different pool of human subjects, with motivations beyond that of payment. But when the subjects are economically vulnerable, as with some of the poor AIDS patients discussed in later chapters of Abadie's study, it compounds the ethical problems facing an institutional review board trying to assess whether the research has scientific merit or is driven instead by business interests.

The IRB in this case oversees the work of a small, community-based organization, not a university (where many clinical trials are conducted), but Abadie suggests that its ambivalence is commonplace. Its members "recognize the benefits that can derive from a relationship with the industry, but at the same time they fear that prospective financial gains can influence the research. These anxieties are reflected particularly in their views of the informed-consent process ... in which volunteers are supposed to be able to evaluate risks and benefits independently of other considerations."

The major weakness of this otherwise intriguing and worrying book is that it provides no clear sense of how typical the “professionalized” guinea pigs in Philadelphia may be -- and how central such repeat-performing volunteers are to the industry employing them.

Abadie maintains that a cohort of full-time human subjects emerged after the pool of prisoners dried up 30 years ago. The needs of the pharmaceutical industry led to the formation of “a group of reliable, knowledgeable, and willing subjects who depend on participation in trials for income to support themselves.” Okay, but just how dependent is the industry on them? What portion of the population of human research subjects for pharmaceutical research consists of such full-timers?

Invocations of “the new subjectivity required by neoliberal governmentality” may have their place in defining the situation. But hard numbers would be good, too. The fact that we don’t have them is part of the problem. But then there aren’t too many dimensions of the health care industry that don’t look like problems, right now.

Author/s: 
Scott McLemee
Author's email: 
scott.mclemee@insidehighered.com

Putting the 'Humanities' in 'Digital Humanities'

Reflecting on the recent The Humanities and Technology conference (THAT Camp) in San Francisco, what strikes me most is that digital humanities events consistently tip more toward the logic-structured digital side of things. That is, they are less balanced out by the humanities side. But what I mean by that itself has been a problem I've been mulling for some time now. What is the missing contribution from the humanities?

I think this digital dominance revolves around two problems.

The first is an old problem. The humanities’ pattern of professional anxiety goes back to the 1800s and stems from pressure to incorporate the methods of science into our disciplines or to develop our own, uniquely humanistic, methods of scholarship. The "digital humanities" rubs salt in these still open wounds by demonstrating what cool things can be done with literature, history, poetry, or philosophy if only we render humanities scholarship compliant with cold, computational logic. Discussions concern how to structure the humanities as data.

The showy and often very visual products built on such data and the ease with which information contained within them is intuitively understood appear, at first blush, to be a triumph of quantitative thinking. The pretty, animated graphs or fluid screen forms belie the fact that boring spreadsheets and databases contain the details. Humanities scholars, too, often recoil from the presumably shallow grasp of a subject that data visualization invites.

For many of us trained in the humanities, to contribute data to such a project feels a bit like chopping up a Picasso into a million pieces and feeding those pieces one by one into a machine that promises to put it all back together, cleaner and prettier than it looked before.

Which leads to the second problem, the difficulty of quantifying an aesthetic experience and — more often — the resistance to doing so. A unique feature of humanities scholarship is that its objects of study evoke an aesthetic response from the reader (or viewer). While a sunset might be beautiful, recognizing its beauty is not critical to studying it scientifically. Failing to appreciate the economy of language in a poem about a sunset, however, is to miss the point.

Literature is more than the sum of its words on a page, just as an artwork is more than the sum of the molecules it comprises. To itemize every word or molecule on a spreadsheet is simply to apply more anesthetizing structure than humanists can bear. And so it seems that the digital humanities is a paradox, trying to combine two incompatible sets of values.

Yet, humanities scholarship is already based on structure: language. "Code," the underlying set of languages that empowers all things digital, is just another language entering the profession. Since the application of digital tools to traditional humanities scholarship can yield fruitful results, perhaps what is often missing from the humanities is a clearer embrace of code.

In fact, "code" is a good example of how something that is more than the sum of its parts emerges from the atomic bits of text that logic demands must be lined up next to each other in just such-and-such a way. When well-structured code is combined with the right software (e.g., a browser, which itself is a product of code), we see William Blake’s illuminated prints, or hear Gertrude Stein reading a poem, or access a world-wide conversation on just what is the digital humanities. As the folks at WordPress say, code is poetry.

I remember 7th-grade homework assignments programming onscreen fireworks explosions in BASIC. When I was in 7th grade, I was willing to patiently decipher code only because of the promise of cool graphics on the other end. When I was older, I realized the I was willing to read patiently through Hegel and Kant because I learned to see the fireworks in the code itself. To avid readers of literature, the characters of a story come alive to us, laying bare our own feelings or moral inclinations in the process.

Detecting patterns, interpreting symbolism, and analyzing logical inconsistencies in text are all techniques used in humanities scholarship. Perhaps the digital humanities' greatest gift to the humanities can be the ability to invest a generation of "users" in the techniques and practiced meticulous attention to detail required to become a scholar.

Author/s: 
Phillip Barron
Author's email: 
newsroom@insidehighered.com

Trained in analytic philosophy, Phillip Barron is a digital history developer at the University of California at Davis.

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