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Deaf girl is cured in world first gene therapy trial
231–240 of 351 posts
Re: Deaf girl is cured in world first gene therapy trial
#232My 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 t…
The deaf community is incredibly proud. I have a lot of respect for that. But at the same time, I don't understand it. I'm extremely visually impaired, and I've never seen the same "It's not a disability!" sentiment mirrored in the blind community. Does anyone have any insight why this might be?
Re: Deaf girl is cured in world first gene therapy trial
#233Earlier quoted context omitted.
That was my first though, BUT... to play devil's advocate, people choose gender reassignment surgery (including young children) and that choice continues to be very very controversial.
The controversy is due to cutting off perfectly good and functioning body parts. Correcting a body part that is not working correctly isn't all that controversial.
Are you implying that there'd be no controversy if people were able to swap parts of their bodies with others'?
Re: Deaf girl is cured in world first gene therapy trial
#234Gene 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…
One good thing about this specific case is that it only persists in the cells exposed to it. New cells and reproduction are unaffected, which helps with the ethics surrounding gene therapy.
Re: Deaf girl is cured in world first gene therapy trial
#235Earlier quoted context omitted.
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.
Humans can learn to recognise new sensory modalities, too (see paragraph 4 of doi:10.3389/fnhum.2019.00443's introduction) – but only if there's hardware that responds to them. The question is whether the visual cortex is capable of making the distinctions.
If colourblindness glasses (e.g. EnChroma®) work for you, then I suppose the answer is trivially "yes, because it already does" – and we should expect gene therapy to be useful. If there are people for whom those glasses don't do anything at all, I'd be more cautious.
Re: Deaf girl is cured in world first gene therapy trial
#236Earlier quoted context omitted.
> I agree with that evaluation, but I also think mavericks should be allowed to try curing their own colorblindness (assuming they had informed consent and paid for the therapy themselves). I mean, what's stopping you? This guy cured his own lactose intolerance: https://www.youtube.com/watch?v=J3FcbFqSoQY But I'm guessing — in part because you say "paid for the therapy" — that you don't really mean "should be allowed…
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...
Re: Deaf girl is cured in world first gene therapy trial
#237As 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…
>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'?
There may be benefits of being 6' over 5' but I dont think that's comparable to deafness.
6' vs 5' is the difference between great hearing and good hearing.
The deafness we are talking about is the difference between having legs and not having legs.
Re: Deaf girl is cured in world first gene therapy trial
#238Earlier quoted context omitted.
>> 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 t…
The deaf community is incredibly proud. I have a lot of respect for that. But at the same time, I don't understand it. I'm extremely visually impaired, and I've never seen the same "It's not a disability!" sentiment mirrored in the blind community. Does anyone have any insight why this might be?
The Deaf (capital D) community has its own special language. There's a lot of culture that comes out of that. On the other hand, the blind community has the same languages as the rest of us.
Re: Deaf girl is cured in world first gene therapy trial
#239Can this treatment be used to treat other diseases? Say for example, people without a functional immune system?
Re: Deaf girl is cured in world first gene therapy trial
#240Medical 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.
What's the end goal of modern medicine though? Immortality? You can perhaps reduce suffering to nil, but you can't cheat death.
Wouldn't reducing suffering to nil be a worthy goal? Is there any reason we shouldn't pursue this to its end?