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First UK child to receive gene therapy for fatal genetic disorder is now healthy

livescience.com

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Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#131

Post by ruskyhacker »

bglazer wrote: post #118
wheelerof4te wrote: post #81

How exactly do you edit a gene? Like, it is very, very small thing. How do you even measure it, let alone replace it?

Biochemistry is wild! Measuring is an absolutely fascinating procedure. The predominant method is called sequencing by synthesis. Illumina is the company that basically rules the market for this technology, they have some decent explanatory videos if you’re interested. The first steps are to isolate DNA, then break it into small bits, replicate those small pieces thousands of times, and then anchor these to a glass s…

Thank you for the detailed explanation!

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#132

Post by mrtksn »

woobar wrote: post #98
gambiting wrote: post #42

Earlier quoted context omitted.

What's more, Europe also has these private hospitals which aren't connected to the national healthcare system and which will provide you with top level care if you are willing to pay, no travel to US necessary. Private health insurance ( gasp! ) is also a thing, should you want to partake in that system.

You are saying that on top of paying for public healthcare (through taxes) europeans are allowed (gasp!) to pay extra for private care?

Of course we are, that’s how a mole was removed when someone was playing harp for me.

So, depending on where you are, private healthcare means the government pays their share and you pay the rest through an insurance or directly. Again depending on where you are the insured is often provided by your employer, so if you happen to get ill you can have your treatment in a luxury.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#133

Post by eternauta3k »

bcrosby95 wrote: post #106
sho_hn wrote: post #6

Earlier quoted context omitted.

People are often surprised by this, but healthcare and insurance systems assign an explicit numerical value to human lives and run with it all the time. https://en.wikipedia.org/wiki/Value_of_life

Anything dealing with human lives needs to assign a value to it. You don't want to spend $100 billion on something that's just gonna save 1 person. But spending $100 on something that's gonna save 1 person is something pretty much everyone is fine with. Somewhere in the middle is where most people disagree.

Saying yes to one person's expensive treatment is saying no to 4 people's cheap treatment.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#134

Post by syastrov »

bglazer wrote: post #118
wheelerof4te wrote: post #81

How exactly do you edit a gene? Like, it is very, very small thing. How do you even measure it, let alone replace it?

Biochemistry is wild! Measuring is an absolutely fascinating procedure. The predominant method is called sequencing by synthesis. Illumina is the company that basically rules the market for this technology, they have some decent explanatory videos if you’re interested. The first steps are to isolate DNA, then break it into small bits, replicate those small pieces thousands of times, and then anchor these to a glass s…

It is super interesting! I was at a talk where a genetics company used the Smith-Waterman algorithm (1) to perform sequence alignment. Still I believe it took a long time (24 hours?) to perform the calculations. They were working on optimizing the code as doing so could mean a faster turnaround.

1. https://en.m.wikipedia.org/wiki/Smith–Waterman_algorithm

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#135

Post by tw1984 »

We are truly living in a very interesting time. AI is already "smarter" than a big chunk of the population, Musk's company is expected to land human onto the mars soon, gene therapy is able to cure rare diseases that was unthinkable just a few decades ago, a certain type of colon cancer was 100% cured in a trial.

Just shockingly amazing!

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#136

Post by l33t233372 »

aaauaucuggaa wrote: post #119
wheelerof4te wrote: post #81

How exactly do you edit a gene? Like, it is very, very small thing. How do you even measure it, let alone replace it?

With DNA sequencing?

I believe the question could be more thoroughly phrased as “How does DNA sequencing work with such precision at such scales that we can edit DNA?”

This formulation has the added benefit of not being easily answered with a flippant remark.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#137

Post by raffraffraff »

tw1984 wrote: post #135

We are truly living in a very interesting time. AI is already "smarter" than a big chunk of the population, Musk's company is expected to land human onto the mars soon, gene therapy is able to cure rare diseases that was unthinkable just a few decades ago, a certain type of colon cancer was 100% cured in a trial. Just shockingly amazing!

Yup! We're still fucked with climate change though. That one isn't fixable.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#139

Post by heavyset_go »

tw1984 wrote: post #135

We are truly living in a very interesting time. AI is already "smarter" than a big chunk of the population, Musk's company is expected to land human onto the mars soon, gene therapy is able to cure rare diseases that was unthinkable just a few decades ago, a certain type of colon cancer was 100% cured in a trial. Just shockingly amazing!

> Musk's company is expected to land human onto the mars soon

I wouldn't make any bets based on Musk's posturing about Mars.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#140

Post by heavyset_go »

ericd wrote: post #72
elil17 wrote: post #44

Earlier quoted context omitted.

I do like the utilitarian approach, I just think sometimes you need to look outside the box of do A or don’t do A. If the only options were pay for the treatment or don’t, then Ireland might be making the right call by not paying for it. Ireland could simply let a local company violate the drug patents. A country like the UK could impose conditions such as profit caps on pharmaceutical companies who base their work o…

From the article: "Libmeldy is approved for use in the European Union and U.K., although the U.K.'s drug price watchdog initially rejected the therapy due to its hefty list price of £2.8 million ($3.4 million at today's exchange rates), BBC News (opens in new tab) reported in 2022. The therapy's manufacturer, Orchard Therapeutics, then offered Libmeldy to the NHS at a significant discount." So it does seem like they'…

"Significant discount" doesn't mean much when they're profiteering.
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