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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

#281

Post by verisimi »

bglazer wrote: post #183
verisimi wrote: post #140

I'm glad this little girl can hear. But I don't understand how this can possibly work. We can read: > “So basically, we find the inner ear and we open the inner ear and infuse the treatment, in this particular case using a catheter, over 16 minutes,” he said. Genes are in cells, right? It seems like what is being said is that this therapy goes in and alters all the cells. The altered cells then keep the alteration. W…

It's a virus that adds a bit of genetic code to cells in the ear. The new genetic code is the instructions for the protein that is broken in the the little girl (and other similar patients). The cell can then use the newly introduced DNA to make a protein. This protein restores the link between the auditory sensory cells and the auditory nerve cells. Regarding the word "infused", the viral particles are carried in an…

Thanks for your answer. Yes, I get that bit you describe, more or less.

But also cells die - all cells are new in the human body after 7 years, right? (Or are we saying ear cells don't?) New cells are produced. Whatever creates new ear cells, needs to know to produce them with the update. I know that marrow creates blood cells.... and I'm not sure how replacement ear cells are created, but if it were something like marrow, this creating piece too that makes new cells also needs to be updated, right?

I have other questions too - eg does this viral deployment really impact every cell? You'd think that the ones nearest would get done repeatedly, whereas those that are less local would never be updated.

Also, if this infusion were to be near reproductive cells, would it also update those cells, so that cells used is reproduction would be updated, and the line would be permanently edited?

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

#282

Post by SJC_Hacker »

Geee wrote: post #184
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…

Another viable future tech for this might be neural implants similar to Neuralink. Not sure how viable it would be.

They already have those - called cochlear implants (CI user here)

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

#283

Post by SJC_Hacker »

squigz wrote: post #258
jasonfarnon wrote: post #225

Earlier quoted context omitted.

What isolation? The children just become fluent signing with their parents, just as any child will spontaneously pick up their parents' language.

Do you think you'd feel as connected to your family if you could only communicate with them by writing, while you can communicate with everyone else by talking? Yes, there would be a level of isolation. It needn't be extreme, but I can't imagine there would be none

>Do you think you'd feel as connected to your family if you could only communicate with them by writing, while you can communicate with everyone else by talking?

Maybe more connected? If you are using a language that few others know, seems like it would enhance the "specialness"

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

#284

Post by rantymcrant »

jpk2f2 wrote: post #273
squigz wrote: post #258

Earlier quoted context omitted.

Do you think you'd feel as connected to your family if you could only communicate with them by writing, while you can communicate with everyone else by talking? Yes, there would be a level of isolation. It needn't be extreme, but I can't imagine there would be none

It's really no different from immigrant families where the parents don't speak English, but the children speak both languages. I've known plenty of people and families like that, it was never an issue.

I've known plenty of people like that where is was an issue. The parents can't rely on neighbors because they can't communicate. Don't have as many friends. Have trouble at local stores, doctors, agencies, etc...

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

#285

Post by SJC_Hacker »

rowanG077 wrote: post #47
maratc wrote: post #37

Yuval Harari makes an interesting point in one of his books: that many kinds of these inventions always start as a way to treat people with some kind of a medical condition and bring them into the "median" spectrum, but there's no stopping there and the same inventions are then used to bring "median" people into the "super-human" spectrum. What happens next is that the "regular" humans have to compete with these "sup…

Isn't that already the case? Genetically the average Olympian is definitely super human compared to the population. Unless we start adding novel genetic data to humans I wouldn't be too worried.

I wouldn't say superhuman - just better than the "average" athlete who trains by maybe 5-10%. But when the difference between finishing first and last in a race is that 5-10%, thats huge.

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

#286

Post by rantymcrant »

toast0 wrote: post #70
gherkinnn wrote: post #25

What always interests me with stories of people hearing or seeing for the first time in their life, what is it like to gain a new sense? One would think that growing up with a sense is integral to its processing (and filtering) and the sudden introduction of a sense later in life would come with all sorts of side effects.

I had a chronic stuffed nose into like the 2nd grade. So when I started taking steroids for my nose, I was able to really smell for the first time, and started noticing cooking smells. Overall, kind of meh, missing out on smell is mostly not a big deal. Smell is useful to detect odorants added to dangerous gasses and to know when the cooking is done if your smoke detector is too far from the kitchen, and it can help…

I think someone going from normal smell ability to no smell ability might feel differently. One of the top joys in my life is eating and a large portion of that experience is smell. Take it away and I'd expect to lose a lot of what I enjoy. Not just as I eat it but even before, the smells of prep. Smelling garlic being fried or the stink of shrimp paste knowing delicious things are arriving soon. The smell of baking bread that makes my mouth water. Etc....

Another example which might seem the opposite for most. I don't personally understand the appeal of stinky tofu (yet). (all over China but most of my experience with it were Taiwan). To me it tastes like a savory tofu dish where someone set a bowl of steaming hot feces on plate next to you while I you eat. In other words, to me, nothing is added by the smell. Take it away and it would be a standard savory tofu dish. But, all of my Taiwanese friends crave this stuff and I think the smell is part of it.

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

#287

Post by aprilthird2021 »

downWidOutaFite wrote: post #200
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.

Funny because I feel the opposite. Health care is so broken with all the politics, insurance, bureaucracy, financialization, etc that the vast majority of people are not able to reap the rewards of progress. Even the science is perverted because of bad incentives and only potentially lucrative research is funded.

I was about to say we pay for all this super modern progress by making healthcare so expensive it's out of reach of the vast majority of people in the world (and in the US).

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

#288

Post by kelnos »

RockRobotRock wrote: post #236
kelnos wrote: post #181

Earlier quoted context omitted.

That's a really tough one. I just watched the lactose intolerance fix video you linked. Certainly that fabrication process is beyond my ability. But, after more of my own research, maybe I'd decide I want to pay someone else to produce the therapy for me. (I'm not anywhere near as lactose intolerant as the guy in the video, but it's bad enough that I'd be happy to rid myself if this problem.) But should I be able to…

I was blown away when I first saw the video, but he's completely reckless. This Reddit thread has some interesting insight into just how dangerous it could have been: https://www.reddit.com/r/videos/comments/7x8x3q/dude_uses_ho...

Yep, and there it is -- I'd have no idea watching that video the risk mentioned by the top commenter there about the possibility of getting cancer for doing something like that.

This is why I'm leaning toward a "no" here... I probably shouldn't be legally allowed to pay someone else to make me something like this, regardless of what sort of informed consent form I sign.

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

#289

Post by dclowd9901 »

squigz wrote: post #260
gherkinnn wrote: post #25

What always interests me with stories of people hearing or seeing for the first time in their life, what is it like to gain a new sense? One would think that growing up with a sense is integral to its processing (and filtering) and the sudden introduction of a sense later in life would come with all sorts of side effects.

I have extreme vision loss, and the idea of gaining full vision has always scared me a little. It seems like such a huge change in my perception of the world would be... jarring. Of course, I still would. It just makes me a bit nervous.

This must be a similar feeling to the feeling of being a parent and the thought of hearing your kid talk for the first time. For some reason, with my kids, it was partly excitement and partly dread. I can’t explain why. It’s something like… it’s such an overwhelming thing to imagine that it’s frightening.

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

#290

Post by vsuperpower2020 »

kiwijamo wrote: post #276
vsuperpower2020 wrote: post #106

Earlier quoted context omitted.

They can call it anything they want, but the moment they leave their "culture" and try to police our language they have to justify it on facts and not just assert that they feel a certain way. It's completely irrelevant to medicine if they have a culture or identity based around their disability.

Can you explain your reasoning behind putting culture in double quotes. You may do well to remember you also need to justify your use of your own words. The medical industry does not (and shouldn't) have the last word on language relating to disability. It would well be worth you reading into the medical model of disability vs the social model of disability. In short: medicine doesn't always work out in the best inte…

I get what you're saying but I'm not going to legitimize a community based around the continued existence of a disability. As science advances, more will be cured and eventually everyone will move on and forgot about whether in the year 20XX people were offended by having deafness cured.
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