Mixed Motives for Experimental Trials on Kids
An email conversation about the news of the day.
April 16 2002 5:30 PM

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Atul, are you, perchance, in addition to being a surgeon, a writer, and a father, also an editor? I promise, I promise, I'm just about finished with the cooking piece! Seriously, I am. But the lag time between filing a story and seeing it in print is out of my control, though I do sometimes whimper obnoxiously when a piece gets held in the dread "bank" too long. You can't help but figure it must stink.

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On the matter of kids and experimental medicine, everybody got much more chary about including minors in clinical studies when 17-year-old Jesse Gelsinger died during a gene therapy trial a year or two ago. Committees were formed, congressional testimony delivered, and the complexities only got knottier. When you're dealing with kids, of course, you have to worry not only about medical details like whether they metabolize drugs differently than do adults, but also questions of informed consent. Jesse may have been old enough to make an informed choice to participate in a trial, but what about a 6- or 7-year-old? To cite an extreme example: Adult cancer patients often agree to undergo highly experimental therapies that have almost no chance of working for them. That is, they consent to become very big white mice (although the extent to which participants realize just how much like lab animals they have become varies, depending on the researcher). Patients' motives are mixed—they don't want to die, and the treatment may, just may, do the trick; and if it fails, they will have done something that could help others down the road. But some of these therapies are quite harrowing, and they make the patients' last days miserable. So, if you are the parent of a child with a terminal disease, what do you do? Do you agree to subject the child to the experimental therapy and the pain it will bring, if you realize the odds of the kid surviving are woefully small? Do you have the right to do that? It's a public good, but kids can't really benefit from the comforting altruistic spirit that infuses an adult patient. Or do you just fool yourself into thinking this long-shot approach could work for your kid, and you have to do something, anything, to help keep the kid alive?

Well, these are the sorts of existential dilemmas that keep bioethicists exercising vigorously in their La-Z-Boys. As a surgeon, you must confront them every day, on your feet and in the flesh.

As for whether children should be swept blithely into seemingly innocuous trials to prevent conditions they don't have—like juvenile delinquency, say, or drug addiction—my libertarian side bristles at the extremes to which society will go to control human behavior. The recent move in a number of high schools to drug test every single kid who so much as attends a sock hop in the afternoon is an example of recasting adolescence as a condition, even a pathology. And is this approach likely to succeed in the most important job of the schools, the community, the nation: teaching kids to be nicer to their parents?

Tomorrow, let's talk about—Botox for wrinkles!

Good cheer,
Natalie

Natalie Angier is a science writer for the New York Times and the author of Woman: An Intimate Geography.

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