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Natalie Angier and Jonathan Weiner

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Medical Trials on Trial

By Natalie Angier
Posted Tuesday, Feb. 22, 2000, at 5:42 PM ET

Jonathan,

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You're absolutely right. Eventually gene therapy will work, at least in some cases, some of the time. It has to. The question, with this experimental medicine as with any other, is when is the right time to start experimenting on human beings?

Admittedly, a lot of sick people are more than willing to offer themselves as guinea pigs when there is no other hope. Your fascinating story in The New Yorker was one such example.

But Jesse Gelsinger was a relatively healthy young man with many years of life ahead of him. His inherited illness was pretty well under control through dietary means. What in the world was he doing in that study when two previous patients had had severely toxic reactions to the gene therapy and when monkeys given similar treatment had died?

It's also very creepy to read medical documents about patients with terminal illnesses participating in some of these "let's try anything" experiments. Yes, the people were doomed anyway. And I don't want to dwell on the gruesome details of the procedures. But the fact is that a lot of patients in highly experimental studies end up dying very soon after receiving their often invasive treatments, sometimes in a matter of hours. Is it really worth losing the last few months of your life to participate in a study that has virtually no chance of helping you? What is informed consent, anyway?

From one who hopes never to participate in a Phase 1, 2, or 3 trial,
Natalie