When the country's biggest gene therapy institute was ordered to stop testing on humans last week, the action marked the end of an era fraught with dubious claims to success and a mess of unreported adverse effects.
People die during experimental treatments all the time because they are usually terribly sick.
But Jesse was not particularly ill, and his father says the researchers played up the potential benefits of the study and played down the potential risks. The researchers deny this, so Jesse's father is talking about filing suit. 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.