How to be a guinea pig and not even know it
Seattle Times staff columnist
Count me out.
I'm thinking of having that phrase posted on my inbox, my mailbox, my phone service and now, most urgently, on my forehead. It's due to the latest civil-liberties news from the weekend. It was news to me anyway — though, like the circular logic of one of those M.C. Escher drawings, part of this story was that everyone was supposed to know about it already.
"You may become medical guinea pig without knowing it," read the headline in the Sunday paper.
The gist was that researchers here and in 10 other cities are doing experiments on accident or cardiac-arrest victims. Without asking them first. And without giving them details about their treatments later.
Apparently, this has been going on for a decade. In 1996, the feds ruled they would allow some research on patients in sudden, life-threatening circumstances when they can't agree to be part of the study.
Say you call 911. When medics arrive, you're unconscious from loss of blood. In a study under way in Seattle since last summer, they might try to stabilize you with the usual saline solution. Or they might try a stronger saline. Or a third fluid with sugar in it.
It's an experiment. Which treatment you get is random. And you'll never know because they won't tell you later.
The goal is a good one, to make medicine better. The doctors say each fluid is safe, but they don't know which is best at saving your life. There's no way for them to find out other than to test them. On us.
It's true a lot of medicine is trial-and-error. Though when they show up at your door, you'd hope it's all on your behalf, not partially in service of a research protocol.
But what troubles me most is: Why are we only debating this now, a year into the experiment? For highway projects, we have huge campaigns with public advisory votes. An involuntary medical test on humans slips by, unnoticed?
It's required that the community be notified. And we were, but in some oblique ways.
Most prominently, ads ran in the interior of Metro buses for a month last summer. The ads stated, in big type:
"Severely injured trauma patients may be enrolled in a study being conducted at Harborview Medical Center."
That reads like a job ad. The key info was below, in smaller print: "You may be enrolled in this study without having the chance to give consent at the time of injury."
I may? Can I decide later? What does this mean?
The study leaders also did a phone poll of 500 people, posted articles in UW newsletters and sent letters to local media. One that ran in the Seattle P-I was headlined: "We can help accident victims survive." It noted the dicey part, about not asking for permission — in the third-to-last paragraph.
That's not much of a community conversation. Nor can I find any mention on the study Web site of how to "opt out."
Turns out you have to wear a steel bracelet 24/7 that says "No Research Study."
Only they don't have any of these bracelets to give out.
This seems like well-intended research. But these are the tactics of telemarketers. Not what you expect when you call the ambulance.
Danny Westneat's column appears Wednesday and Sunday. Reach him at 206-464-2086 or email@example.com.
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