[0x4d464d48]

"I think once people move past gene editing as "playing god", we will be able to get rid of advanced genetic diseases entirely (ie, muscular dystrophy) and edit our genes to be naturally resistant to todays and future diseases."

I think the "go fast and break things" mindset is scarier here than the debates about whether or not we have the right to play God.

[somesortofthing]

I used to think this way but honestly, given how poorly nature does in terms of creating genetic material for new people, I've come to believe that we have a pretty big margin for error. The harm done by a gung-ho attitude toward gene editing has to be compared to the harm done by allowing the "natural" course of events to continue.

[0x4d464d48]

Look up elixir sulfanilamide and thalidomide.

That's the sort of blood that writes regulations. Experimental medicine has a long, clumsy and cruel tradition.

[solveit]

And nature has a long, clumsy, cruel tradition of killing literally everyone in various unpleasant ways, usually before their time. There is a tradeoff and "optimize for making sure we never ever ever repeat the thalidomide fiasco again" is not the best strategy to take.

[roywiggins]

The Jesse Gelsinger case is probably the most relevant here.

https://www.sciencehistory.org/distillations/the-death-of-je...

[0x4d464d48]

Excellent citation.

Thanks for this.

"Meanwhile, journalists and federal health officials discovered several troubling lapses in the conduct of the study. For example, the researchers had earlier told the FDA they would tighten up the trial’s eligibility criteria, but they never followed through. When two patients suffered serious side effects, the scientists did not immediately inform the agency or put the study on hold as required. It turned out Jesse’s pretrial test results showed he had poor liver function, indicating he arguably shouldn’t have received the OTC gene injection.

But perhaps most damning were failures in the informed-consent process. Researchers hadn’t told Jesse about the earlier patients’ side effects or about two lab monkeys killed by high doses of adenoviruses. If he had been properly briefed about these previous issues, he might have dropped out of the study and still be alive today. Wilson was also accused of a conflict of interest: he had a stake in the company that owned the gene-transfer technology and stood to benefit if the trial succeeded.

...

The investigations drew attention to wider problems in oversight of gene-therapy experiments and human research generally. For example, the FDA and NIH revealed that 691 volunteers in gene-therapy experiments had either died or fallen ill in the seven years before Jesse’s death; only 39 of these incidents had been reported promptly as required. The agencies tightened monitoring of trials, increased inspections, and created a new system for reporting serious side effects, among other steps. Penn responded to the crisis by strengthening the institutional review boards that oversee its trials, putting in new protections for patients, and prohibiting researchers from having financial stakes in their trials."

Truly nothing new under the sun.

[csee]

Look up the cheap antigen tests that were 80 percent effective and blocked by regulators in early 2020. How many people have needlessly and silently died because of excessive precautions and red tape? The opportunity cost deaths are hidden and unseen, but they're real all the same.