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Compared to the experience related by "Timothy," a twenty-year-old anarchist punk who preferred that his real name not appear in print, Carter's adventure sounds like a walk in the park. A resident of Lawrence, Kansas, Timothy says he once participated in a study where he was given (and subsequently cured of) gonorrhea.
"It kinda sucked," understates the unkempt, semi-professional lab rat, who can't remember precisely how many studies he's taken part in but estimates the number at somewhere between eight and ten. The way Timothy tells it, he was informed at the outset of the study that the odds he'd actually contract the sexually transmitted disease were one in four, with the others being control cases.
"I was the one," he says, wrinkling his brow. Clearly the painful memories remain. "It burned when I peed," he says.
Veteran lab rat Robert Helms estimates he has participated in between 60 and 80 studies. The strangest one, Helms says, involved swallowing a capsule that contained a tiny object. "We ate the capsule, and then it dissolved inside the stomach, all except for a tiny piece of plastic -- or some cement material -- that your stomach couldn't dissolve," Helms recounts.
The study, which Helms underwent in the winter of 2002-03 in his hometown of Philadelphia, sought to measure how long it took the object to pass through a subject's digestive system. "We had to collect all our feces, and the nurse had to go through it with a little spatula -- a little ice-cream-stick kind of thing, and find that thing," says Helms.
The real booty was the pay: Helms says he was paid about $4,000 for the study, which lasted about six weeks.
Facilities that conduct paid medical trials aren't inclined to share information, so it's difficult to verify the tales told by human guinea pigs. Still, Helms probably serves as a pretty decent bullshit detector. For the past eight years, he has chronicled lab rats' painful and bizarre stories for his zine and Web site, Guinea Pig Zero (www.guineapigzero.com). In the process he has heard every test-study urban legend in the book. "You've got the one where they cut your toe off and they pay you 5,000 bucks, or the one where they stop your heart for 10,000 bucks," offers the 42-year-old writer, who's living in a Paris suburb while he writes a book about early Philadelphia anarchists. "Or they put you under general anesthesia for nine hours and pull you back out and pay you whatever. Some of them are probably just extended half-truths, some of them are totally fiction, some were more likely to happen in the former Soviet Union or some rogue operation in the Third World."
As for "Timothy" and his purported dose of the clap, Helms isn't buying. "I'm pretty skeptical of that," he says. "Why would they give him gonorrhea? Why wouldn't they find a guy who already had gonorrhea? I don't see it."
He got so sick of people's banal urban legends, says Helms, that he made up one of his own, which he tells to people he meets at studies. It goes like this:
"They're getting guys to eat the end of a cable coated with Teflon -- keep eating it until it comes out the rectum. Then it gets sterilized by the nurse. Then the next guy has to eat it, until ten guys are connected. They're using it to develop new methods of prisoner control, to keep people from running away."
When it comes to the clinical-trial industry, truth can be as harrowing as fiction -- from the infamous Tuskegee syphilis study, in which hundreds of black participants were allowed to get sick and even die despite the availability of a cure, to more recent tragedies.
In February a nineteen-year-old Pennsylvania woman hanged herself inside a testing center while testing an experimental antidepressant. She was attempting to pay her way through Bible college. Closer to home, a twenty-month-old girl died while taking experimental chemotherapy drugs in a Washington University clinical trial at Children's Hospital in 2002. Three other children died of the same side effect at other hospitals. Believing that their daughter Daniella could have survived if they'd been more accurately informed of the study's risks, John and Oksana Rogers set up a Web site (www.daniellarogers.org) devoted to educating parents of children who participate in drug trials. Last year the federal Office of Human Research Protection found that Washington U. should have done a more thorough job of warning about potential complications.
"In fact," John Rogers asserts, "there are more rights for animals than there are for children when it comes to research."
Rogers declines to discuss his dealings with Washington University; Joni Westerhouse, spokeswoman for Wash. U.'s School of Medicine, says the university's legal counsel instructed her not to comment about the matter.
Also in 2002, Saint Louis University courted controversy during a trial on a herpes vaccine. In recruiting test subjects, the university sought women who were sexually active or planning to become sexually active but who were not involved in monogamous relationships. The method so enraged SLU neurology professor William Burke that he penned an angry letter to the St. Louis Post-Dispatch, complaining that "in this case being a good subject means agreeing to repeatedly perform acts that are considered seriously immoral by the Catholic university that sponsors the experiment."
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