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Deaf girl is cured in world first gene therapy trial

independent.co.uk

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Re: Deaf girl is cured in world first gene therapy trial

#161

Post by financetechbro »

dekhn wrote: post #130

Gene therapy has been an extremely slow game. Part of that is ethics, and part of that is technology. A single death in a single trial slowed down gene therapy for decades https://en.wikipedia.org/wiki/Jesse_Gelsinger I dedicated much of my biology training to learning how to carry out gene therapy only to conclude that it will continue to be the underdog in disease therapy for a long time. I do not expect to see lar…

Do not underestimate the entrepreneurial spirit when there is a profit to be made

Re: Deaf girl is cured in world first gene therapy trial

#162

Post by vsuperpower2020 »

ImJamal wrote: post #108
ForrestN wrote: post #88

As a disabled person, I admit to being made slightly uncomfortable by the uncritical framing of genetically modified people as "therapy" that all people should want. Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics? If we have statistics that taller people have better outcomes in life, should we do gene therapy to make sure everyone is taller than 6'? How much diversit…

I think there is an easy line. We know what should occur with certain parts of the body. Ears should be able to hear so when they don't we know there is a problem. There isn't a height in order to function properly or something like that. If somebody is 5 feet or 6 feet they are still capable of having their whole body function. Yes, they may have issues due to their height but their body still works correctly. (Extr…

It's crazy to me that we even need to explain the difference between variation in height and a non-functional organ. I don't know if people are just so open minded that their brains fell out, or if it's some new idea where everyone gets their own personal perception of reality and nothing is real, maaan.

Re: Deaf girl is cured in world first gene therapy trial

#163

Post by dhosek »

throwaway2037 wrote: post #157
dhosek wrote: post #57

Earlier quoted context omitted.

It might be the condition I have, otosclerosis, where the bones of the middle ear fuse. The surgery, a stapedectomy, involves removing the bones and replacing them with a metallic prosthesis. Unfortunately, in my case, the calcification is also happening in my cochlea which means that at some indeterminate time in the future, I will end up losing all hearing. Not to mention that even with the prosthetic, my hearing i…

Thank you to share about your personal experience. Will a cochlear implant help for your condition?

It will, but with the caveat that hearing with a cochlear implant is (at least at current technology levels), inferior to hearing with an actual cochlea. So there’s a balancing act where they want to continue having me hear with my cochlea as long as possible. The other problem is that with a CI, I have no hearing at all without the receiver which means that I would be completely deaf while swimming, showering, etc. while I have at least some hearing without my hearing aids right now (although I had an ear infection in December which left me completely deaf for a week. It was a bit startling how much people were unwilling to engage in the smallest adaptations for me—I found how to set up live transcriptions on my phone and I remember the cashier at the grocery store being unwilling to use that so I could see what she was saying).

Re: Deaf girl is cured in world first gene therapy trial

#164

Post by lupire »

wizzwizz4 wrote: post #80
trebligdivad wrote: post #65

Earlier quoted context omitted.

The 'though it'd probably take a while for the brain to understand the new information' is an interesting question; on one hand people say you need to fix stuff early in development while the brain is still very plastic (so great for this kid); but then again there is that demo of people getting used to vertically flipped vision with weird glasses; so perhaps something is flexible?

The brain is good at re-mapping things where it can make a distinction, but it seems to only learn distinctions in so-called "critical periods". See doi:10.1038/228477a0 for a famous 1970s experiment on the subject.

There are lots of examples. Phonemes for language and are a very common example of things that can't be learned easily or at all later in life.

But huge changes like a major color might overcome that. Humans learn to recognize new major objects they've never seen before.

Re: Deaf girl is cured in world first gene therapy trial

#165

Post by dhosek »

dhosek wrote: post #163
throwaway2037 wrote: post #157

Earlier quoted context omitted.

Thank you to share about your personal experience. Will a cochlear implant help for your condition?

It will, but with the caveat that hearing with a cochlear implant is (at least at current technology levels), inferior to hearing with an actual cochlea. So there’s a balancing act where they want to continue having me hear with my cochlea as long as possible. The other problem is that with a CI, I have no hearing at all without the receiver which means that I would be completely deaf while swimming, showering, etc.…

(With the live transcription feature, I was actually able to engage in normal-ish telephone conversations, maybe even a little more effective than I can with using the audio.)

Re: Deaf girl is cured in world first gene therapy trial

#166

Post by jajko »

alsetmusic wrote: post #71

Medical science is about the only thing in modern life that consistently delivers hope. While all the other terrible things are going on, something like this comes along and I’m just extremely happy to be alive right now.

Astronomy is cool too, nothing anchors you back in reality like realizing how absolutely microscopic and insignificant our entire mankind's existence was and is.

Solid perspective and understanding of bigger picture is important, then nothing can surprise you much.

Re: Deaf girl is cured in world first gene therapy trial

#167

Post by hayleox »

highwayman47 wrote: post #87
alsetmusic wrote: post #71

Medical science is about the only thing in modern life that consistently delivers hope. While all the other terrible things are going on, something like this comes along and I’m just extremely happy to be alive right now.

It would be nice if people at these companies were rewarded the same way as food delivery app employees.

???? I would imagine the average surgeon is much happier with their compensation than the average DoorDasher. It's a reliable fixed-rate salary vs wondering if you'll get enough $3 tips to make rent this month.

Re: Deaf girl is cured in world first gene therapy trial

#168

Post by unsupp0rted »

dotnet00 wrote: post #116
unsupp0rted wrote: post #69

Every time I hear about a new medical discovery or treatment, I think "yeah right, maybe in 15 years". Well, here we finally are. Our ancestors, and I mean great-grandparents and grandparents, would call us gods.

It is interesting to wonder if they'd call us gods in a good way though. Perhaps they might see it as 'playing god' instead. HN being a techie crowd tends to skew this a bit, but it's worth remembering that genetic engineering is still pretty controversial to the average person: https://www.pewresearch.org/internet/2022/03/17/americans-ar...

Those who suddenly got eyesight or hearing would call us gods in a good way.

Everybody has a problem with people "playing god" until they get paralyzed or a serious illness. Then "playing god" is all they wish for.

Re: Deaf girl is cured in world first gene therapy trial

#169

Post by 1970-01-01 »

iLoveOncall wrote: post #123
1970-01-01 wrote: post #86

Earlier quoted context omitted.

NYT has an excellent summary on it. Life becomes very hard when they try to use their new sense in any meaningful way: https://www.nytimes.com/2021/06/29/books/review/comnig-to-ou...

This is not at all a summary, it's a book review and it is based on 4 hand-picked examples. I wouldn't read anything into it.

https://en.wikipedia.org/wiki/Molyneux%27s_problem#Current_r...

Re: Deaf girl is cured in world first gene therapy trial

#170

Post by xhevahir »

TeMPOraL wrote: post #77
anthony__j wrote: post #14

Earlier quoted context omitted.

like someone mentioned in a separate comment, you are conflating disease with disability here. when people become too old to walk without assistance, you wouldn't say that they have a walking disease.

> when people become too old to walk without assistance, you wouldn't say that they have a walking disease. Why not? We have some peculiar cultural memes related to accepting the inevitable end of life, which we perhaps should revisit. I see no reason to not consider aging itself as a slow-burn disease, one we'll hopefully cure at some point too.

"Peculiar cultural memes" is an odd way of describing a piece of advice that one encounters so frequently in cultures the world over.
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