An exciting new scientific technology has made it possible to tinker with the very DNA that makes us who we are, offering up fresh hope of new cures for difficult diseases.
Gelsinger's story has also shaped a debate about how informed consent, how it should be handled and whether risky new products should only be tested on the sickest patients that continues to this day.for thinking about promising new medications and the heavy ethical questions they bring up, Tabor noted, but there are limits to how much even the scientists know about gene therapy.
There's lots of uncertainty about just how well gene therapies will work, for how long, and what the risks could be, as well as when they might show up. Patients who participate in trials are taking big risks. But they and their families may also be desperate for better options and want to overlook those risks.
"Hope in humans is a wonderful thing," Tabor said. But it"can be a challenging, risky thing if not addressed in clinical trials." And these ethical questions will likely become even more pronounced as more gene therapies come to market, Tabor said. The therapies are"on this knife's edge of benefit and risk," she said, and could well stay in that place for some time.
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