|
Some of the better economic news coming out of Montreal these days involves the health of its medical research industry. Last year Les Affaires magazine said we were fifth in the world for the importance of our biomedical research publications and quoted Henry Friesen, president of the Medical Research Council of Canada, as saying that Montreal was the "intellectual capital of Canada in medical research." The Canadian head offices of some two dozen pharmaceutical multinationals are located here in Montreal, not including several Ontario-based firms whose hands-on research is carried out here. Facilitating it all is a strong corps of tens of thousands of human guinea pigs, Montrealers who earn a few extra bucks trying out new drugs, giving serial blood, urine, stool and vomit samples, getting their brains pumped with radioactive glucose and enduring various other bodily ordeals in the name of science. It's clearly become a mini-industry of its own. Welfare recipients participate in three or four studies a year and easily double their yearly income. People temporarily out of work bridge an income gap by testing out a new drug. Go to any research lab's waiting room as the Mirror did, and you'll see it packed with people young, old, male and female, shabby and well-groomed; you'll see moms and dads there, towing the kids along. Medical testing isn't yet what you could call a career choice, but being a human guinea pig has definitely become a way many people in this city have chosen to make ends meet. And yet, medical testing on human subjects is not supposed to be done for money. According to the guidelines on research involving human subjects set out by the National Research Council of Canada (NRC), payment for research subjects is "strongly discouraged." Reimbursements for items like transportation, meals and parking is acceptable, as is "a modest honorarium to recognize and show appreciation for the inconvenience involved in... participation in the research." But the guidelines specifically state that if payment is deemed necessary, the researchers must demonstrate "that the payment is not of an amount that would induce subjects to participate or cause them to consent to risks that they would not otherwise accept." "That's ludicrous. That's a real knee-slapper," says Clark Von Pelt (not his real name) when this passage from the guidelines was read out to him. "Why would anybody do anything like that for any reason other than money?" Von Pelt says he has participated in roughly 20 drug studies over the past 10 years, not one of which was done with an altruistic interest in the advance of medical science. Rather, he did it to feed and clothe himself through the periods when he couldn't find employment in his profession. Read further in the NRC guidelines and you'll find a passage stating that testing on people from "vulnerable or dependent populations" can be justified only if the research specifically concerns people from such populations. The guidelines define some of these vulnerable or dependent populations as "students, children, prisoners, employees (of medical research facilities), military personnel, minority groups, incapacitated persons and socially deprived persons [italics added]." That some of these research subjects have indeed been socially deprived persons when they enlisted for testing is obvious. Max West (not his real name) described the reasons he, at age 19, participated in his first research study with his brother 14 years ago (he's since done roughly 30, but stopped for good four years ago): "I was really, really skinny when I was 19. I was underweight, and certainly underweight for their classifications because naturally, genetically, that's just the way I am. But we were also underweight because we didn't have enough money to buy food. So we needed to get on the study to make the money to buy food. "But," West says, explaining the Catch-22 of getting accepted for the experiment, "we're underweight. So we got about two dozen flashlight batteries, attached them to a cloth belt, sucked in our waists, tightened our belts around them and drank about two or three litres each of water. We made it by a hair." What are the ethical ramifications of paying people to be medical test subjects? One has only to read about the booming market for the organs of executed Chinese prisoners in the latest issue of The Sciences to get a feel for the havoc financial incentives in the medical profession are wreaking on medical and legal ethics in that country. Certainly, the NRC's guidelines seem to suggest that payment of medical subjects is abhorrent. What then to make of the widespread acceptance among the down and out in this city of paid medical testing as an income supplement? Suzanne Gouin-Boudreau, an official with the NRC's Legal Services and a member of the nine-person committee that developed the guidelines, says determining what's right and what's wrong about medical testing for money is a balancing act: "You can never say there must be absolutely no monetary inducement to participate in a medical study. Even if someone has to have $10 to apply does not render the whole thing unethical. But if a company offers a whole lot of money for something painful and invasive, or something very risky, and all of a sudden all these people from soup kitchens show up, then we've got a problem." Ethicist Katherine Young, a professor in the Religious Studies department at McGill who also helped draft the NRC guidelines, notes that only the NRC is officially bound by the guidelines. "If something is totally private," she explains, "then there's no control over testing." Officials at Phoenix International and L.A.B. Pharmaceutical Research, two of the biggest firms performing human testing in Montreal, did not return the Mirror's calls. The subjects themselves don't seem to think medical testing for money is all that big a deal. "I don't have anything against them as long as they're done by competent people and they give you the proper information," says Jack Smith (not his real name), who says he's participated in a handful of medical studies. "We've got to experiment on people. There's no other way." "Bio [L.A.B.'s name before 1996 was Bio-Research] treated me really well," says West. "They liked me a lot and would call me up whenever there was a study. They'd give me these little incentive things: I've got everything--the T-shirt, the sweat shirt, the sweat pants, the duffle bag--all with the company logo." Still, subjects confess there's a definite stigma attached to undergoing human testing for money. West, for instance, says he's never worn the clothing items Bio-Research gave him in public, and admits he was unable to tell his current girlfriend of his history as a human guinea pig. Von Pelt admits to it being a "demeaning thing to do," but adds, "there are more positive things to say about them than negative. As a way of supplementing your income, it's not a bad thing." That the decision to participate in a research study is tied to one's economic well-being is clearly evident. Says West: "The first studies I went on, when the economy was a little bit better and more people had jobs, they had trouble getting subjects, and they weren't that well known, and you had a high incidence of ex-cons and bikers. Elements of prison culture would find their way into these studies. Somebody would spit on some guy's pillow, for instance, and I was told this means, 'We don't like you and if you don't watch it we're going to beat you up.' "Now it's more mainstream. In recent years I saw out-of-work lawyers and former CEO-types on these studies. Because of pride they would do the study in their suits and ties. And all the time they'd be saying, 'I'm just here to earn a few extra bucks. I'm not like the rest of you.'" The fact that thousands of people in this city (according to the receptionist of one research company, there were 50,000 names on file in that institute alone) use medical testing to earn income when other means are unavailable suggests the gray areas of the ethical guidelines are being exploited to the full. Another dubious aspect of paid medical testing is the fact that payment is under the table. A call to the recruitment department of a major testing company will get you a researcher freely touting the payment's undetectable status as a reason for participating. And yet according to Carole Lafond of the Ministère du Revenu, this payment is taxable and must be deducted from welfare and unemployment cheques as income. West has his own theory as to why the fiscal aspects of medical testing are being overlooked: "The government's not going to go into testing firms and say, 'How much money did you give to who?' because they know they couldn't get the human subjects. They would lose two-thirds of their subjects who are on welfare."
|
