[HN Gopher] Gene therapy allows an 11-year-old boy to hear
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       Gene therapy allows an 11-year-old boy to hear
        
       Author : mikhael
       Score  : 60 points
       Date   : 2024-01-23 17:26 UTC (5 hours ago)
        
 (HTM) web link (www.nytimes.com)
 (TXT) w3m dump (www.nytimes.com)
        
       | CommanderData wrote:
       | If true this is ground breaking news especially in the Audiology
       | community.
       | 
       | There is zero treatment besides hearing aids / cochlear implants
       | for sensory hearing loss in Human history until now.
        
         | ijhuygft776 wrote:
         | while this is great, couldn't something like Neuralink help
         | too?
        
           | ceejayoz wrote:
           | Neuralink has a long way to go to demonstrate that
           | capability.
        
           | GauntletWizard wrote:
           | [delayed]
        
       | neonate wrote:
       | https://archive.ph/3FmSZ
        
       | twostorytower wrote:
       | _But no matter how well the gene therapy works, the researchers
       | recognize that Aissam may never be able to understand or speak a
       | language, Dr. Germiller said. The brain has a narrow window for
       | learning to speak beginning around ages 2 to 3, he explained.
       | After age 5, the window for learning spoken language is
       | permanently shut._
       | 
       | Wow that's incredibly sad, but I am glad that this will
       | eventually get into the ears of thousands of deaf newborns.
       | Incredible medical advancement. Gives me hope that one day my
       | tinnitus may have a cure.
        
         | doublerabbit wrote:
         | > After age 5, the window for learning spoken language is
         | permanently shut.
         | 
         | It's fascinating how our brains are wired in such a way to
         | enable read-only mode at an certain age in development.
        
           | s1artibartfast wrote:
           | I think it is more like telling the marketing team that you
           | can't add an HDMI port to the computuer because it has
           | already finished the production run.
           | 
           | That is to say, it is as much of a hardware issue as a
           | software issue.
        
             | shermantanktop wrote:
             | Get ready to repeat yourself, because the marketing team
             | really _wants_ that port. The CMO just said  "We should
             | really add an HDMI port in a code patch because it would
             | help OEM sales a lot." A sales engineer has agreed and is
             | scheduling a brainstorm session.
        
         | ricardobeat wrote:
         | > the window for learning spoken language is permanently shut
         | 
         | People still learn languages with completely different sounds
         | when they are much older? Japanese, the african click-sound
         | languages... is it some lower-level abstraction that goes
         | missing?
        
           | teaearlgraycold wrote:
           | I think it's the ability to understand any language through
           | sound. Presumably other languages learned lean heavily on
           | what you already know from other languages.
        
           | GauntletWizard wrote:
           | I think the true answer is not impossibility, but
           | significant, near insurmountable difficulty. The sound
           | processing is not hooked up to cognition in the way it would
           | be in a brain that had always had sensory input from the
           | ears. Aissam would first need to learn to differentiate
           | tones, voices, mouth-sounds, consonants vs vowels, etc.
           | That's a lot to ask of a brain that had no understanding of
           | that form of input at all.
           | 
           | But all of this may turn out to be untrue! Our understanding
           | of language acquisition comes from Feral Children[1], who had
           | no language understanding at all. Aissam has language skills,
           | though developed late - The article mentions he started
           | learning Spanish Sign Language at 8 years old. That's already
           | a remarkable feat. This might overturn our views of language
           | acquisition, which were mostly formed in the 1800's; Pedagogy
           | has come a long way since then.
           | 
           | [1] https://en.wikipedia.org/wiki/Language_acquisition#As_a_t
           | ypi...
        
           | lucubratory wrote:
           | For reference, the language you're thinking of is Xhosa
        
         | lawlessone wrote:
         | Even still there's plenty of situations where this could save
         | his life.
        
         | spywaregorilla wrote:
         | How are born deaf people able to learn to speak if this is the
         | case?
        
           | stank345 wrote:
           | The sensory medium is separate from one's capacity to learn
           | and use language. Sign languages have grammar, vocabulary,
           | "accents" etc just like spoken languages.
        
             | zamadatix wrote:
             | I think they mean how can a person born deaf learn to make
             | speech if the above quote says this individual will not be
             | able to speak a language. I think the answer to that is
             | it's more "they won't be able to make speech like a person
             | born with hearing would do by listening and naturally
             | learning" rather than "they won't be able to try to make
             | sounds with their voice they are not able to process
             | auditorily".
        
           | janeerie wrote:
           | Deaf children can be taught to speak by very explicitly
           | demonstrating tongue/throat position. It's a pretty arduous
           | process and has fallen out of favor, so most deaf people who
           | don't get a cochlear implant will use sign language only.
           | 
           | However, with early implantation language acquisition is
           | relatively easy (thought it varies per child).
        
         | smeej wrote:
         | Is it the capacity to learn to _speak_ a language, or the
         | capacity to learn to _understand_ spoken language that shuts?
         | Or both? It 's not quite clear from the way it's phrased here
         | if maybe the inability to speak is only a consequence of the
         | inability to understand, or if it's theoretically separable.
         | Aren't there people who learn to speak, albeit with an accent,
         | even though they have never been able to hear? So they might
         | learn to read lips and speak, even though they wouldn't be able
         | to understand a spoken language if they gained the ability to
         | hear?
         | 
         | I ask because I'm interested to know which parts of brain
         | research might eventually try to prop that door open. Granted,
         | most people born with this genetic condition would probably
         | just be treated shortly after birth and learn spoken language
         | during the normal time frame, not go through some special other
         | treatment just to prop that mental door open, but I'd still be
         | interested to understand what's actually going on in the brain
         | better.
        
       | coderintherye wrote:
       | Looking up Otoferlin (the gene in question) led to this
       | accessible and understandable paper:
       | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5283607/ (2016)
        
         | somethoughts wrote:
         | Also a slide deck/presentation that seems related by Akouos -
         | the original biotech company that Eli Lilly acquired.
         | 
         | https://akouos.com/wp-content/uploads/2021/05/2021_0503_ASGC...
        
       | chewmieser wrote:
       | Gift article link:
       | https://www.nytimes.com/2024/01/23/health/deaf-gene-therapy....
        
       | karaterobot wrote:
       | > Some Deaf parents, he added, celebrate when their newborn
       | baby's hearing test indicates that the baby is deaf too and so
       | can be part of their community.
       | 
       | Tough one. You want to respect the wishes of the parents, but you
       | also want the kid to have the option to hear (and understand
       | spoken language) when they are an adult and can make their own
       | decisions. You may not be able to have both, given that this kind
       | of deafness is progressive, and even with gene therapy you
       | evidently need to treat it when young to give the child any hope
       | of hearing. What if it turns out the kid wants to be able to
       | hear, but by the time they are of age, it's too late and their
       | inner ear's hair cells are all dead?
        
         | throwuxiytayq wrote:
         | Moronic tribalism at its worst. This is why we can't have nice
         | things.
        
         | Loughla wrote:
         | Deaf culture (with a capital D) is a fascinating study in what
         | it means to have a disability.
         | 
         | The definition of disability is impairing one or more major
         | life function. Capital D says that's not them. They just
         | communicate differently.
         | 
         | So. If they have that culture, is it bad for them to celebrate
         | that they can share in it with their children?
         | 
         | For reference, I think it's bad. But I can see the logic.
        
       | rafaelero wrote:
       | > Some Deaf parents, he added, celebrate when their newborn
       | baby's hearing test indicates that the baby is deaf too and so
       | can be part of their community.
       | 
       | Omg, not only some people are deaf but also blind.
        
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