I once came very close to receiving an experimental vaccine that, let's face it, could conceivably have killed me. In retrospect, I'm glad the researchers running the trial decided that I wasn't eligible to be a study subject. But at the time I was actually disappointed when they turned me down.
I'm planning to write a feature about people who volunteer for clinical trials, why they do it, and what they get out of it. In my case, I was just doing my job; I was a reporter chasing a good story.
The vaccine I was willing to get injected into my shoulder was an experimental vaccine against West Nile virus. The experimental elixir wasn't made from West Nile virus itself, but it did contain snippets of DNA identical to those found in the virus, which can kill people, birds, and other animals. DNA vaccines are a relatively new type of vaccine, and it's not yet clear how safe or how efficacious they tend to be. (In theory, they're safer than live-virus vaccines, which can cause low-level infections in recipients.)
[Read A Parent's Guide to Managing Vaccines]
It turned out that I wasn't a useful subject for the trial because I had received a yellow fever vaccine several years earlier. Yellow fever and West Nile cause similar immune responses, which meant it would have been difficult for the researchers to determine, through follow-up blood testing, whether I had developed immunity to West Nile or whether I was simply immune to yellow fever.
In the end, I contacted another study volunteer (a guy who proved to be eligible and did receive the experimental shot) and wrote the story about him rather than about my own personal experience, which had been my original plan.
On another occasion, I considered participating in a so-called phase 1 trial, which was designed to test the safety of a medicine researchers hoped could prevent malaria. But I never volunteered for that one. Several of my family members talked me out of it, and I'm glad they did. Drugs can sometimes cause severe damage to the liver, kidneys, or other organs, and that particular drug had never been tested in humans. It seems half-crazy to me now that I almost took that risk. As my wife put: "I guess you were young then, and feeling invincible."
Invincible or not, some people volunteer for clinical trials again and again. In at least one area of Switzerland, medical researchers have created a registry of healthy volunteers in order to "encourage responsible participation in medical research." That's code for "make sure overzealous volunteers aren't participating in multiple trials at once," since that could foul up researchers' conclusions. In the first three years of the registry's existence, they identified almost 200 "habitual or regular volunteers." Some volunteers join study after study because they like the level of attention that medical researchers lavish on study subjects. Others do it for the cash compensation that some trials offer, although there are ethical restrictions on how much researchers can pay their volunteers.
I did eventually join a clinical trial, but the treatment being tested was about as innocuous as you can imagine. Researchers recruited volunteers who were suffering from insomnia (which I had at the time) and tested whether those who were given a little device started to get better sleep. That experimental device told volunteers when to sleep and when to do certain other activities. But I never got to try it out; I was assigned to the study's control group and all I got was a book, titled No More Sleepless Night, that I was told might help me beat insomnia. Maybe it did help. I can't be sure.
Have you ever volunteered, or even considered volunteering, to participate in a trial? What would it take to get you to do it—cash, better care, the knowledge that you'd be serving humanity?
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Jordan of MO 10:49AM April 17, 2013
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