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Deaf girl is cured in world first gene therapy trial

independent.co.uk

151–160 of 351 posts

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

#151
post #144

Earlier quoted context omitted.

I can't think of a medically relevant example except maybe stimulants and painkillers, but outside of medicine, this definitely is the case with technology: many inventions have a ratchet effect - they start as gimmicks, but when they reach a critical mass of users, they confer so much competitive benefits that they rapidly spread everywhere, and eventually become required to function. Examples range from agriculture…

> those people realized they're able to coordinate better when they have synced clocks, which made new things possible The development of clocks is related to industrialization and opening of plants that need all the workers to be there at e.g. 8 am for the shift to start. If you have to be at the factory at 8 am you'd better know what time it is. It's not that the development of clocks has brought us factories; rath…

It's a feedback loop; manufacturing couldn't scale without clocks, and neither transportation - think e.g. train time tables. Once it became possible to keep people in sync down to minutes, it immediately became popular, and those who avoided it were increasingly left behind.

FWIW, I'm not saying it's a good development. I'm torn on this. Outside of direct progress, we seem to be running in Red Queen's races quite a lot, as improvements turn into baseline.

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

#152
post #84

Earlier quoted context omitted.

I re-read your comment, but I still disagree that the evidence provided by myself and others in response, as well as evident near-term future advancements, are irrelevant to the comment you responded to. > a powerful prosthetic limb or exoskeleton that is superior to the biological version in every way makes both the disabled person and the perfectly healthy person equally superhuman. I think I'm not following, or el…

>I think I'm not following, or else failing to see the relevance to this comment. This is essentially what the GP was getting at: these advancements can/will lead to anatomically "correct" humans failing to compete. I suppose this is just down to interpretation/point of focus. I was focusing on the 'levels' being referenced. A 'perfect' prosthetic allows all people to be able to reach the same level, while the GP was…

> it covers even just the act of practicing

Imagine that a gene modification is discovered that allows a significant breakthrough in human memory. First, people with Alzheimer would undergo that treatment, to the cheers and applauds of virtually everyone (including me and you). Then the people with a risk of Alzheimer would undergo it, then it would be cheap enough that anybody rich enough could do it. Then imagine that e.g. I undergo that treatment and am now able to memorize all of Wikipedia, GitHub, and Stack Overflow. Then imagine competing against me for a job opening. You can practice all you want but never able to reach that level, because you're limited by genes while I've got rid of that limitation.

The Google guys are extremely well-invested in the bio-tech startups, and Larry the Oracle Guy puts all his money into an "institute for prolonging of human life". No bonus points will be awarded for the correct answer to the question "whose life exactly that institute is working to prolong?"

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

#154

Earlier quoted context omitted.

It's not just cancer right? UV light will damage those sensitive photoreceptor cells, so you would end up seeing less and less of anything over those couple of decades. Even non-UV blue light is hard for the eyes to deal with. Personally I'd just prefer wearing glasses that shift the UV to some other part of the spectrum.

> Personally I'd just prefer wearing glasses that shift the UV to some other part of the spectrum. Does this exist? I thought those kinds of non-linear effects only happen at extremely high fields (e.g. with a very fast pulsed laser to concentrate energy in time)

No, at least not without active electronics.

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

#155
post #39

I’m optimistic that at some point, I’ll be able to get a treatment to take care of my red green color blindness. I’m well aware that it’s very much a first world problem, and rightfully should be very low on the totem pole of medical issues to cure. But goddamnit, I want to see red.

Have you tried color blindness glasses (e.g. EnChroma)? I am not familiar with them but some reaction videos were pretty heartwarming.

I've tried them, they kind of make reds pop a little more.

But imagine this. You put on a pair of pink tinted glasses to fix your vision. Ok great, but everything is tinted now. I don't find it pleasing at all. My normal is my normal, putting tinted glasses on me doesn't make things look better, it looks wrong.

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

#156
post #144

Earlier quoted context omitted.

I can't think of a medically relevant example except maybe stimulants and painkillers, but outside of medicine, this definitely is the case with technology: many inventions have a ratchet effect - they start as gimmicks, but when they reach a critical mass of users, they confer so much competitive benefits that they rapidly spread everywhere, and eventually become required to function. Examples range from agriculture…

> those people realized they're able to coordinate better when they have synced clocks, which made new things possible The development of clocks is related to industrialization and opening of plants that need all the workers to be there at e.g. 8 am for the shift to start. If you have to be at the factory at 8 am you'd better know what time it is. It's not that the development of clocks has brought us factories; rath…

The relationship is likely bidirectional as opposed to a one way street.

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

#157
post #57

My Mom was born with less than half of her hearing in left ear and barely anything at all in right ear. She had surgery as an adult and it slightly improved, especially on the right side. Pretty sure this little girl and my Mom don't share the same disability at all but she saw these news today and texted me so excited because future kids won't have to endure the same. Brings tears to my eyes, I'm so grateful for mod…

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?

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

#158
post #133

Earlier quoted context omitted.

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...

When I was 18 (early 90s) and applying for university, the admissions office asked me what I wanted to do and I said "play god with DNA". Sure it sounds arrogant, but I knew that gene therapy would become a thing and if it worked, eventually people would apply it recreationally (by which I mean, to change your phenotype, or your future children's phenotype, for non-disease purposes). I went into that field and spent…

I’m about your age, but holy hell, if I had been an admissions officer, that would have sold me on you.

I’m an anesthesiologist, though, so “likes to play god” sort of goes with the territory. It’s not common, but there are surgeries where you go on heart-lung bypass, chill the patient down to 30 C, and then stop the pumps. No blood flow. The surgeon does the critical part, you turn the pumps back on and warm them up, and then the body takes over again.

It is absolutely magic.

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

#159
post #59

Earlier quoted context omitted.

I don't really know enough of the medical details - I thought people with color blindness lacked the proper receptors in their eyes, so it's not like in the article where a connection is restored; you'd have to grow new infrastructure in the eye which seems a bit more complicated. Nevertheless, would be very cool if possible - I know lots of men with color blindness.

In color blindness, the cone cells produce an incorrect opsin protein that isn't sensitive to red (or is sensitive to a frequency close to green). Gene therapy would fix that, though it'd probably take a while for the brain to understand the new information. The main reason this therapy isn't available is because the FDA has decided that the risks of gene therapy aren't worth the benefit of curing color blindness. I…

Could you provide the ref/details of this particular gene therapy and FDA views? I can understand why the FDA wants to move ahead slowly unless the condition is life-threatening or the impact is life-changing.

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

#160

My Mom was born with less than half of her hearing in left ear and barely anything at all in right ear. She had surgery as an adult and it slightly improved, especially on the right side. Pretty sure this little girl and my Mom don't share the same disability at all but she saw these news today and texted me so excited because future kids won't have to endure the same. Brings tears to my eyes, I'm so grateful for mod…

>> so excited because future kids won't have to endure the same.

When cochlear implants became routine there was a brief protest by the deaf and hard-of-hearing community. The line between people with a disability and a person who is simply different is a longstanding debate. How and when medicine should intervene is a hot button issue.

I had a relative born with a malformed ear canal. The doctors rushed to get her the surgery needed so that she could hear equally in both ears, before her developing brain started ignoring the "bad" ear. A few years in and her hearing is now better than mine.

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