Not everyone agrees. The Food and Drug Administration currently exercises almost total control over the information flow from clinical trials, and while biotech companies certainly don't want their human research subjects to die, they do want to keep a tight lid on their proprietary research. "This is a highly commercial undertaking," says TIME correspondent Dick Thompson, "and most of the tests to date have failed." Still, companies that do hit on the right combination are spinning so much genetic straw into pure gold, and they don't want their competitors learning Rumplestiltskin's secrets on their dime. For the NIH, the task is to find a way to keep the public safe without giving away the company store.
It's never a pretty sight when medical ethics collide head-on with the multibillion-dollar business of disease research. Cover your eyes, because that's exactly what's happening this week in Washington, D.C., where the National Institutes of Health is holding a three-day hearing on the white-hot topic of gene therapy research. In the wake of the September death of 18-year-old gene therapy recipient Jesse Gelsinger, the NIH has a clear request for public safety: Open human clinical trials to public scrutiny and report any medical problems or setbacks immediately.