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Baby is healed with first personalized gene-editing treatment

nytimes.com

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Re: Baby is healed with first personalized gene-editing treatment

#491

Post by ckemere »

The work outlined in the actual paper is quite remarkable. Within this 6 month period they generated transgenic mice with the precise mutations (paternal and maternal) this baby had in order to test treatment for functionality and toxicity as well as a doing a toxicity study in monkeys.

To those thinking about commercialization opportunities, these two steps seem the most labor intensive and time consuming, but also the most necessary in order to actually have confidence to inject completely customized gene editing therapy in a kid.

(Also worth highlighting for folks opposed to animal research.)

Re: Baby is healed with first personalized gene-editing treatment

#492

Post by goda90 »

kubb wrote: post #439
GenshoTikamura wrote: post #368

Earlier quoted context omitted.

Another problem nobody talks about is the cognitive dissonance of living in the world today but dismissing all matching patterns as science fiction or conspiracy theories. Maybe narrow focus and short attention span are to blame

When someone tells you they know how the future plays out because they saw it in fiction, oh boy you better be skeptical.

Maybe they are actually saying "we should take steps to avoid possible futures that we've already established would be bad in our works of art". You can't just hand wave away the idea that some technology could allow for greater invasion of privacy and worse social stratification when we still live in a world where invasion of privacy and social stratification actively occur.

Re: Baby is healed with first personalized gene-editing treatment

#493

Post by sfink »

kmmlng wrote: post #339
morsecodist wrote: post #317

Earlier quoted context omitted.

Effective Altruism is such an interesting title. Almost no one views their Altruism as ineffective. The differentiator is what makes their flavor of Altruism effective, but that's not in the title. It would be like calling the movement "real Altruism" or "good Altruism". A good name might be rational Altruism because in practice these people are from the rationalist movement and doing Altruism, or what they feel is A…

I suppose in the beginning, it was about finding ways to measure how effective different altruistic approaches actually are and focusing your efforts on the most effective ones. Effective then essentially means how much impact you are achieving per dollar spent. One of the more convincing ways of doing this is looking at different charitable foundations and determining how much of each dollar you donate to them actua…

> One of the more convincing ways of doing this is looking at different charitable foundations and determining how much of each dollar you donate to them actually ends up being used to fix some problem and how much ends up being absorbed by the charitable foundation itself (salaries etc.) with nothing to show for it.

Color me unconvinced. This will work for some situations. At this point, it's well known enough that it's a target that has ceased to be a good measure (Goodhart's Law).

The usual way to look at this is to look at the percentage of donations spent on administrative costs. This makes two large assumptions: (1) administrative costs have zero benefit, and (2) non-administrative costs have 100% benefit. Both are wildly wrong.

A simple counterexample: you're going to solve hunger. So you take donations, skim 0.0000001% off the top for your time because "I'm maximizing benefit, baby!", and use the rest to purchase bananas. You dump those bananas in a pile in the middle of a homeless encampment.

There are so many problems with this, but I'll stick with the simplest: in 2 weeks, you have a pile of rotten bananas and everyone is starving again. It would have been better to store some of the bananas and give them out over time, which requires space and maybe even cooling to hold inventory, which cost money, and that's money that is not directly fixing the problem.

There are so many examples of feel-good world saving that end up destroying communities and cultures, fostering dependence, promoting corruption, propping up the institutions that causing the problem, etc.

Another analogy: you make a billion dollars and put it in a trust for your grandchild to inherit the full sum when they turn 16. Your efficiency measure is at 100%! What could possibly go wrong? Could someone improve the outcome by, you know, administering the trust for you?

Smart administration can (but does not have to) increase effectiveness. Using this magical "how much of each dollar... ends up being used to fix some problem" metric is going to encourage ineffective charities and deceptive accounting.

Re: Baby is healed with first personalized gene-editing treatment

#494

Post by zarathustreal »

tim333 wrote: post #487
morsecodist wrote: post #317

Earlier quoted context omitted.

Effective Altruism is such an interesting title. Almost no one views their Altruism as ineffective. The differentiator is what makes their flavor of Altruism effective, but that's not in the title. It would be like calling the movement "real Altruism" or "good Altruism". A good name might be rational Altruism because in practice these people are from the rationalist movement and doing Altruism, or what they feel is A…

>Almost no one views their Altruism as ineffective As someone who has occasionally given money to charities for homelessness and the like I don't really expect it to fix much. More the thought that counts.

I like to call this “lazy altruism”

Re: Baby is healed with first personalized gene-editing treatment

#495

Post by goda90 »

Joel_Mckay wrote: post #271
throw7 wrote: post #63

Gattaca here we come!

Fertility care often already included testing for common genetic disorders, and parents with a history of severe disease would often make the hard choice to try again. Due to recent Theocratic political shifts, it means more families will face the worst possible life for their children. Gattaca was a film years ahead of its time, and raises the question of what happens when people try to "fix" human beings beyond dis…

I'd say Gattaca touches on how easy it is to edge a little over the line of what is a "disease". For example this scene touches on "prejudicial conditions" like baldness: https://www.youtube.com/watch?v=pCN5QG8Jtwg

Re: Baby is healed with first personalized gene-editing treatment

#496

Post by jodrellblank »

something098 wrote: post #387
make3 wrote: post #375

Earlier quoted context omitted.

they could CRISPR his relevant reproductive cells, this general topic is an important subject of discussion

Ah, yes - few million of them. Simple task for sure, if the liver is functioning as testes.

https://news.ycombinator.com/item?id=34925145

Re: Baby is healed with first personalized gene-editing treatment

#498

Post by Den_VR »

MrZander wrote: post #11

> To accomplish that feat, the treatment is wrapped in fatty lipid molecules to protect it from degradation in the blood on its way to the liver, where the edit will be made. Inside the lipids are instructions that command the cells to produce an enzyme that edits the gene. They also carry a molecular GPS — CRISPR — which was altered to crawl along a person’s DNA until it finds the exact DNA letter that needs to be c…

You should have seen the homebrew guy’s talk on DIY CRISPR where he injected himself on stage. And that was years ago. Incredible times for incredible work.

Re: Baby is healed with first personalized gene-editing treatment

#500

Post by thesparks »

My daughter has a genetic condition (PKU) that is also caused by a single letter change in her DNA and also causes brain damage if she consumes too much protein. Luckily it can be controlled with a strict low-protein diet (This is SO exciting! The fact that there is a chance of a cure has absolutely made my day!
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