The university ordered an independent investigation, and its sharply critical findings were released last week. In response, Penn ordered the institute to abandon research on human subjects forever. For the scientists involved, the action was draconian. Since gene therapy cannot be demonstrated without human studies, the decision pretty much put the institute out of the gene therapy business all together.

What happened at Penn was not an isolated case, so the Penn proceedings are not a fix for what ails gene therapy. Other investigations, by Congress plus the two agencies responsible for overseeing gene therapy research (the Food and Drug Administration and the National Institutes of Health) have uncovered a breathtaking quantity of misbehavior in gene therapy trials all over the country.

It's not just that Jesse's treatment was bungled, although it apparently was. There's been lots of bungling in other trials as well, and other ambiguous deaths. It also turns out that researchers have routinely flouted the government's rules governing gene therapy -- especially the requirement to report all "adverse events" following the experiments. "Adverse events" means any serious reaction or side effect. Researchers have failed to disclose a stunning number of adverse events in gene therapy trials: more than 700. And counting.

Adverse-events reporting was not invented just to drive scientists bananas and give bureaucrats paper to shuffle. Accurate reporting is crucial to the future of gene therapy -- in fact, to clinical research in general. All scientists working on a new treatment need to know when something bad happens in experiments on people, because it gives them clues about what to do, and what not to do, and where to go from here.

"Reporting of adverse events is a joke; it hasn't worked for years," declares Penn's Center for Bioethics director Arthur Caplan, who contends that this sort of misbehavior infects all experiments on people. "Gene therapy is getting close scrutiny at the moment, but human-subjects research has had serious problems of noncompliance for ages."

Granted, Caplan doesn't qualify as a wholly disinterested observer. Caplan, whose center is associated with the now-vilified Institute for Gene Therapy, was consulted about the conduct of its gene therapy studies, including Jesse's. But he has also been a professional research-watcher for decades, and his observation that gene therapy is not a special case is correct. The failures of oversight, the absence of monitoring, the plain old sloppiness that pervaded clinical gene therapy research at Penn (and, we now know, many other clinical gene therapy studies) infiltrates all kinds of human-subjects research.

Human research has come a long way since the so-called Tuskegee experiment. From the 1930s through the early 1970s, the government studied the natural history and course of untreated syphilis in a large group of black men with the disease. The men were not told they were infected. Not only was treatment withheld, the Public Health Service actively intervened to keep the men from being treated by other agencies, such as the U.S. Army. In the uproar that ensued when the syphilis study came to light, Congress legislated safeguards to protect human subjects, and these measures have been tinkered with and added to over the years. Hence the requirement to report "adverse events." But the practice of using human volunteers to test new treatment still is far from the humane, honest, careful way of making progress against disease that it should be.

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