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Re:7/67 Children Receiving Skysona Gene Therapy Develop Bloo... by hackeraccount on Thursday October 10, 2024 @03:57PM (#41802864)
Is a 10% risk of potential death a good justification to cure the disease?

Actually - more realistic would be, What if you had the disease in question and knew the cure might (then again might not) have some unknown side effect, up to or even exceeding a 10% chance of death. Would you take it?

Obviously the answer is hidden somewhere in the details but most of those details are unknown or unknowable.

Which is to say I bet any legal action's success will depend upon just who knew what and who they told.

Re:7/67 Children Receiving Skysona Gene Therapy Develop Bloo... by kragen on Thursday October 10, 2024 @04:41PM (#41803358)
I shouldn't have used the word "justification"; please see my clarification in https://news.ycombinator.com/item?id=41802129.
Re:7/67 Children Receiving Skysona Gene Therapy Develop Bloo... by fasa99 on Friday October 11, 2024 @12:36AM (#41806176)
>Actually - more realistic would be, What if you had the disease in question and knew the cure might (then again might not) have some unknown side effect, up to or even exceeding a 10% chance of death. Would you take it?

Yea.

That exists commonly. It's called high risk surgery.

This genetic disease is more like you die in ~5 years and also all the nerves start to fail including ones involving thinking, memory, personality (cerebral)

Same with cancer truly. Many patients treated for childhood solid tumors go onto get blood cancers due to the treatment/chemo being genotoxic. Oh, and infertile also.

So I think gene therapy should be considered totally valid when these other potentially deadly treatments (surgery, chemo) are used - all of it in deadly situations. Gene therapy also has ways to go, lentiviruses are well known to randomly integrate sometimes in the wrong spot (a tumor suppressor gene) whereas CRISPR can be more targeted.