How the promise of experimental gene therapy turned tragic for one Arizona family

Jesse Gelsinger's is a cautionary tale in gene therapy research, again in the spotlight due to COVID-19.
Paul Gelsinger has told the story of his son’s death before. But every so often he must revisit it. He must revisit Jesse.
He reflects on the places, the people, the events that changed his life forever. The doctor’s offices, the hospitals, the clinical trial that would make history.
Full story: tinyurl.com/m3...
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[@skippyhippo]

I cried when the dad cried. This is so heartbreaking and I just want to give that family a hug... Rest in Pease Jesse

[@bernadettebecher4689]

Found this after listening to "The Illusion of Consensus" episode 12: Robert Malone interview where he spoke about this young boy. Apparently Dr Malone was the whistle blower as to what happened!

[@ManishKumar-sr8zh]

Rest in Peace 🙏. There is always a risk of death in clinical trials of a therapy or technique that is in its infancy itself. That is why, such risky work should be done very very carefully and by giving full honest information about the risks involved. There should be no scope for error, dishonesty and greed.

[@cookwithme1698]

Rest in peace it’s very hard watching this can’t stop crying

[@MartineReed]

First thoughts go to whether or not his organs were donated. There so a lot we don’t know about that industry. How are we goi g to move to AI medical when we don’t even have the I part right?

[@adel19997]

Was autopsy done? Were risks addressed before gene therapy began? Or did they sign without reading fine print

[@DjentleArt]

I'm sure there was an autopsy done, but when it comes to clinical trials like this, there is no such thing as "signing without reading the fine print." The entire concept of informed consent and staying within ethical boundaries is about having all possible risks and errors known up to that point being explained very clearly so that it is fully understood. It sounds like some risks/previous results were withheld from the Gelsingers before the trial began, which is what made this trial unethical.

[@GP-wu1eu]

The university was totally at fault. They failed to disclose, in the informed-consent documentation, the deaths of monkeys given a similar treatment. Also gelsingers high ammonium levels should have excluded him from the trial. It’s all on Wikipedia

[@xyz-kl3zc]

They hid from the Gelsinger family that some animals had died during the trials and that even some earlier recipients of the gene therapy faced some side effects to the extent of bringing the trials to a halt. I read about it in the book "the gene" by Dr. Siddhartha Mukherjee

[@TejinderSingh-k5m]

Rest in peace

[@jcarleezy]

You put the words of this video into a YT comment and backend scripting hides it from view. I wonder why.