While this isn’t one of my usual areas of interest, there is a personal element for me (more about that at the end). Some people earn their living as subjects for drug tests; it’s called guinea pigging. (There’s more here in a July 1, 2015 posting; see the first three paragraphs after the information about cross-posting and the circumstances under which I wrote the article.)

Earlier this fall (2024), the Canadian Broadcasting Corporation (CBC) released a documentary, Bodies for Rent, focusing on two guinea piggers. Here’s more from a September 25, 2024 CBC online article about their documentary,

Before a drug becomes available on the market, it must undergo rigorous testing and multiple levels of clinical trials to ensure its functionality and safety. Every year, thousands of people in Canada and the U.S. take part in these trials, and may receive financial compensation for doing so. 

A new documentary highlights how some volunteers are attempting to earn a living by putting their bodies on the line. Bodies for Rent follows two men who spend their days searching for eligible clinical studies, and shows the lengths they’ll go to in order to complete a trial and get paid.  

A way to make a ‘living’

Participating in a trial for a medical drug still under development involves reporting any side effects. It’s a potentially dangerous “job,” but for many volunteers, the rewards outweigh the risks. 

“I think I’ve done more than 40 studies,” says 55-year-old “Franco,” who conceals his real identity with makeup in the documentary. “I was struggling to pay my rent. And I saw an ad at the subway in Toronto, and they said, ‘Would you like to make up to $1,200 over a weekend?'”

“I usually make [$30,000] to 40,000 a year. Before, I was making, like, $18,000 working at a factory.”

Raighne, an artist living in Minneapolis, was raised by a single mother and grew up on welfare. “I’ve done about 20 or 30 drug trials,” he says in the film. “And nothing makes money like clinical studies.”

Trying to get out of debt and manage an unstable business, Raighne sometimes spends days or weeks away from home while participating in a study. “I had a friend describe it as, like, ‘drug jail,'” he says. “Because you’re trapped for a set amount of time. You’re under observation.”

From testing on prisoners to testing on the poor

Before the 1970s, most Phase I clinical trials — which look at a drug’s safety, determine the safe dosage range and see if there are any side effects — were conducted on prisoners. This allowed researchers to control and monitor every aspect of participants’ lives. 

“These studies did the most unimaginably horrible things you can think of to prisoners there,” says Carl Elliott, a University of Minnesota bioethicist featured in Bodies for Rent and the author of The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No [emphasis mine]. 

“For example, they injected inmates with herpes. They injected them with asbestos. They even tested chemical warfare agents on them.”

Public outcry and new reforms eventually made research in prisons much more difficult. “The question was, ‘Well, who do we do Phase I trials on now?’ We can’t do them on prisoners anymore,” says Elliott. 

“The answer is poor people.”

‘A financial incentive to lie’

When testing in prisons stopped and financial incentives were introduced, students and people impacted by poverty became more common test subjects. However, the promise of money at the completion of a trial has added complications. 

“When I started doing studies, I used to be very honest,” says Franco. “I [would] tell all the side effects that I was going through.” 

But after reporting severe migraines during one study, Franco says he was forced to leave — with less than 20 per cent of the promised payout. He says he was also blocked from doing further studies with that company. 

“I [was] being penalized for being honest. So, after that, I kind of learned my lesson and I decided to tone down the side effects,” he says. 

…

Once in a study, the risks persist. Franco says that after participating for nearly two months in a study worth around $20,000 to him, he received a call from the clinic saying he had inflammation in his pancreas. The study manager told him he was being removed from the study, and later, the clinic advised him to go to an emergency room immediately. 

“I hope it’s not permanent. If it’s permanent, then I’m gonna be upset,” Franco says to the camera in the documentary. “I was supposed to get around $20,000. If I don’t get the full amount because I am getting side effects, I think that it’s unfair.”

In the end, Franco was paid $9,000. 

…

The September 25, 2024 CBC online article also includes an embedded video about testing on prisoners. “Bodies for Rent” can be viewed on CBC Gem. (You do have to create an account in order to view the documentary or anything else on CBC Gem.)

A walk down memory lane for Remembrance Day 2024

When my father was in basic training for the Canadian army and preparing to fight in World War II, he participated in some kind of experiment. The details are fuzzy as he didn’t talk about it much but he did insist that some of his medical problems (specifically, the problems he had with his skin) were directly due to his experience as a guinea pig and that he should be compensated by the Canadian government. If memory serves, he felt the army had misled him into participating in the experiment. .

Papa was 15 1/2 when he lied his way into the army. Not too long after, the army realizing its mistake kept him back from the front (in some training camp in the Prairies), which is when he became a medical experiment for a time. On reaching the age of 18 the Canadian army shipped him overseas.

When he finally did try to speak up about his experience as a guinea pig it was the late 1960s and he didn’t pursue the matter for long being of the opinion that no one would pay much attention. He wasn’t wrong.

It wasn’t until details about the infamous Tuskegee Syphilis Study were revealed that there was serious discussion about informed consent (about 1972) in the United States. I don’t know when it became a serious discussion in Canada. Even then, some of the research from the 1970s is stomach churning as I found on stumbling across a study from that period. The researchers were conducting an experiment with a drug they knew was not going to work and that had bad side effects as was noted in the abstract. The testing took place on patients in a hospital ward.

There is still a long ways to go as evidenced by the “Bodies for Rent” documentary and Elliott’s 2024 book “The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No”. I hope there are changes to how drug testing is done as a consequence of added awareness but it’s a long hard road to change.

For my father on Remembrance Day 2024: you were right; what they did to you was wrong. And still, you went and fought. Thank you.