[HN Gopher] Gene therapy restored hearing in deaf patients
       ___________________________________________________________________
        
       Gene therapy restored hearing in deaf patients
        
       Author : justacrow
       Score  : 267 points
       Date   : 2025-07-02 15:03 UTC (7 hours ago)
        
 (HTM) web link (news.ki.se)
 (TXT) w3m dump (news.ki.se)
        
       | vonnik wrote:
       | adjacent, same trend: https://news.ufl.edu/2024/09/blindness-
       | gene-therapy/
        
         | agumonkey wrote:
         | somehow it seems the singularity is here .. i hope it's well
         | distributed
        
       | d0100 wrote:
       | Anyone from the deaf community that can tell us how these kind of
       | news are received?
       | 
       | I wonder how this compares to animosity towards coclear implants
       | by a subsection of the community
        
         | guerrilla wrote:
         | That was my first thought too. I wonder how many people would
         | choose to stay deaf just to stay in the community.
        
         | retrac wrote:
         | Controversial in the same way cochlear implants are.
         | 
         | Many deaf/Deaf parents want children who hear. And I think
         | absent the cultural consideration, almost all would want
         | children who hear.
         | 
         | But you can't ignore the cultural consideration. If you are
         | deaf, and have a deaf child, curing that child's deafness means
         | they will move away from you later in life. It's a kind of
         | alienation even when the child remains bicultural, they usually
         | end up almost entirely in the hearing world.
         | 
         | That said, most deaf people who have children have hearing
         | children anyway. Hereditary deafness like that is relatively
         | rare like that.
         | 
         | But for people from such families, and who live in a culturally
         | deaf world -- they are not disabled. The cultural environment
         | they live in is ... one in which deafness is not disabling. And
         | it's going to be a very high hill to climb to convince them
         | that they are missing something. They certainly don't feel it.
         | This is particularly true in the United States which has such a
         | proud tradition of deaf culture and education -- you can go all
         | the way to doctorate level studies in ASL, work in ASL, the
         | hearing world being a strange foreign culture you only rarely
         | wade into -- only rarely _need_ to.
         | 
         | I'd cure it for myself, and my child if I had one. No question.
         | But I'm not culturally deaf. I feel isolated by it in the same
         | way most hearing people anticipate deafness to be as an
         | experience. But again -- people who live in the deaf cultural
         | world -- they do not feel that, and they don't feel disabled
         | because, in their context, they aren't. It's hard to
         | communicate this to most hearing people. The usual response is
         | dismissive, and unfortunately I think a lot of that ultimately
         | goes back to very old metaphysical attitudes towards language
         | and intelligence. A lot of hearing people still don't believe,
         | deep down, that sign languages are equivalent to spoken
         | languages, in particular. It's just gesture. You're lacking
         | something essential to the human condition without spoken
         | language. Etc. But for the culturally deaf, nothing is missing
         | from their lives, except the perception of sound.
        
           | bigstrat2003 wrote:
           | There are few things that make me angrier than trying to hold
           | back cures for deafness because of "cultural erasure" or
           | whatever the phrasing is. It is utterly reprehensible. To try
           | to keep someone disabled (yes - disabled, not "differently
           | abled", they are objectively lacking a capability that a
           | healthy human has) just so that there are more people in your
           | community is objectively evil in my book. It is directly
           | doing harm to people for one's own benefit.
           | 
           | If a person wishes to not get a certain treatment - fine,
           | that's their right. But when one starts trying to keep others
           | down, that's _not ok_.
        
             | retrac wrote:
             | I said "not disabling", not that deafness is not a
             | disability.
             | 
             | Those two things mean different things to me. Obviously
             | deaf people cannot hear. Not able. Dis-able. Deafness is a
             | disability.
             | 
             | But not all disabilities are generally disabling of
             | individuals. The only disability that deafness causes is a
             | lack of perception of sound.
             | 
             | Hearing people have a panoply of inferences about what that
             | means -- about how it disables and how broadly it disables.
             | And most of them are faulty. It doesn't result in
             | isolation, in particular, in a deaf cultural context. In
             | fact in the deaf cultural context about the only thing
             | missing is some auditory alerts that would be nice as a
             | visual complement, and some aspects of music and the like.
             | Yes. Birds chirping is beautiful. I miss it deeply. It'd be
             | nice to have a world where every kid gets to experience
             | that.
             | 
             | But all of the social and emotional and cognitive
             | consequences imagined of deafness, are not innate to the
             | lack of hearing.
        
               | MintPaw wrote:
               | I'm empathetic to this argument, but there needs to be
               | some kind of differentiation between preserving culture
               | and abuse for the sake of community. I can imagine the
               | same argument applying to a cult with cruel traditions,
               | or hazing in general.
        
               | smaudet wrote:
               | It's more than that (not deaf either) - if suddenly there
               | is a new therapy to grow a third eye in the back of your
               | head, should you?
               | 
               | Or should a fish be able to breathe without water?
               | 
               | In both cases there are ways to function without
               | fundamentally altering the body, and neither is wrong.
               | 
               | It is not so clear that there is "abuse", when there is
               | an empathetic standard of living.
               | 
               | Now to me, the best argument for taking this is that deaf
               | people do have ears, whether or not they function. So it
               | is reasonable for them to experience sound, but also,
               | they have a right not to, if they so choose.
               | 
               | What I think is harder, if you have experienced neither,
               | to be able to make that decision well. And nobody is
               | talking yet about reversing such a therapy...
        
               | guerrilla wrote:
               | Abuse by who? It's themselves who are against adopting
               | it. It's just autonomy at work.
        
               | og_kalu wrote:
               | Parents and children ?
               | 
               | Sure Adults opting out of such treatments on such grounds
               | is fine. Parents doing so to their children, not so much.
               | 
               | I mean you can't exactly go, "We'll wait for them to be
               | old enough to make the decision for themselves" for
               | hearing.
        
               | UltraSane wrote:
               | Abuse of deaf children. Being able to cure deafness in a
               | child and not doing so isn't much worse than
               | intentionally making the child deaf.
        
               | squigz wrote:
               | I'm not deaf, so I don't know about the lived experiences
               | of people who are. But I am extremely visually impaired,
               | and if someone said something along these lines about
               | being blind, I'd be... annoyed. Thankfully, people don't
               | often say things they would about being deaf, about being
               | blind, which I've always found a bit odd.
               | 
               | Perhaps I'm misunderstanding, but are you basically
               | saying that there's no real negative aspects inherent to
               | being deaf, outside of those imposed by society?
        
               | BeetleB wrote:
               | > Perhaps I'm misunderstanding, but are you basically
               | saying that there's no real negative aspects inherent to
               | being deaf, outside of those imposed by society?
               | 
               | This is a valid question. My gripe is people aren't
               | asking the obvious _other_ questions:
               | 
               | 1. What are the positive aspects of deafness?
               | 
               | 2. What are the _different_ aspects of deafness (neither
               | positive nor negative, but leads to a very different
               | human experience).
               | 
               | If either of these significantly outnumber the negative
               | aspects, I can see why imposing a treatment on children
               | without the parent's consent is problematic.
        
               | squigz wrote:
               | > 1. What are the positive aspects of deafness?
               | 
               | I think a more appropriate question would be, what are
               | some positive aspects of being deaf, _that are unique to
               | being deaf_? As you point out a few times, a positive
               | aspect of being deaf, and the main reason it 's 'not
               | disabling', is because there is a community around it.
               | But that is not inherent to being deaf, since non-deaf
               | people also have communities; indeed, those same deaf
               | communities could exist as they are even if their members
               | were cured
               | 
               | > 2. What are the different aspects of deafness (neither
               | positive nor negative, but leads to a very different
               | human experience).
               | 
               | Can you elaborate on some of these?
               | 
               | > If either of these significantly outnumber the negative
               | aspects
               | 
               | Also, I surely hope this isn't a simple matter of
               | numbers, right? I mean, surely one has to weigh the
               | severity of the negative aspects in this. "Not being able
               | to hear" is but one negative aspect, but it's a pretty
               | big one.
        
               | smaudet wrote:
               | Perhaps one advantage that even deaf people might not
               | appreciate - being at "peace".
               | 
               | There are many who can hear who crave little or no sound.
               | Being unable to hear is a (semi?) permanent mute button.
               | No noise, just your thoughts and whatever you can see.
               | 
               | The biggest downside to being deaf? Missing out on
               | omnidirectional communication. Whether that be hearing
               | the telltale sounds of a critter in the bush, or
               | conversing with someone without sight, that would be the
               | major disadvantage.
               | 
               | That being said, it isn't perhaps as big an issue as one
               | might imagine - bear attacks don't happen only to deaf
               | people, plenty of people get hit by buses they could have
               | heard, and often nobody listens to the intercom anyways
               | (sometimes it is inaudible over general noise).
               | 
               | The next biggest, probably music. But again, a lot of
               | music is objectively bad (stressed loud notes that are
               | designed to attract attention versus complex or
               | thoughtful melodies), when you reduce many vapid pop
               | songs to their linguistic components, you might suddenly
               | find you aren't missing out on much...
               | 
               | I can hear, and I appreciate the convenience. However I
               | also struggle to find auditory peace without jamming my
               | ears with plugs, and I appreciate the calm and quiet...
               | I'm not sure my quality of life is that much better as a
               | result of being able to hear.
        
               | smaudet wrote:
               | Being able to see was more evolutionary pertinent to us.
               | Same with smell...
               | 
               | Animals that can hear extremely well (owls for instance)
               | rely on this trait to be able to survive.
               | 
               | It's always been more important to us to be able to see
               | versus hear things, we evolved our large brains to take
               | advantage of symbols and information. You can hear a
               | symbol but it requires relatively a lot of energy to
               | relay that over any long distance. In contrast, a smoke
               | signal is visible for many many miles.
               | 
               | Things that are seen tend to be more durable, too. A
               | scream lasts for only an instant, but the signs of a
               | scuffle may last for days or weeks. A carving in stone
               | can last for hundreds of years... and many of the things
               | we eat can be seen but not heard (well).
               | 
               | So it is a far bigger deal to us to be blind than to lack
               | any of the other senses.
        
             | BeetleB wrote:
             | Sorry, but they are differently abled. Their brains and
             | perceptions are different from people who can hear. You are
             | assuming that those differences are all negatives. They do
             | not believe that to be the case.
             | 
             | Many people here self-diagnose as Asperger's. Can you not
             | see why they would not want a "cure"?
             | 
             | Being an extrovert objectively gives you great advantages
             | in (most) societies. As an introverted parent, I would
             | definitely fight any "cure" for my introverted children.
             | 
             | Furthermore, if both parents are deaf and the kid is not
             | deaf, there's a good chance that in the first so many years
             | of life, the kid will have poorer mental development than
             | the deaf kid. Not quite the same, but an example: Deaf kids
             | born to deaf parents hit the same language milestones as
             | hearing kids born to hearing parents. But deaf kids born to
             | hearing parents do worse, because the parents don't know
             | the appropriate way of thinking/communicating.
             | 
             | Related: Deaf kids who were given cochlear implants, but no
             | sign language training fared a lot worse than both hearing
             | kids and deaf kids who learned sign language.
        
               | crooked-v wrote:
               | As someone who's on the autism spectrum, I think there's
               | an immense qualitative and quantitative difference
               | between someone's brain working differently and the
               | straightforward presence or lack of a specific physical
               | capability.
               | 
               | I'd still be cautious because there's the long-running
               | tendency for any kind of 'cure' for anything inheritable
               | to be used as a eugenics bludgeon, but that's about
               | society rather than the direct effects.
        
               | BeetleB wrote:
               | > I think there's an immense qualitative and quantitative
               | difference between someone's brain working differently
               | and the straightforward presence or lack of a specific
               | physical capability.
               | 
               | In this case, the lack of a specific physical ability
               | results in that person's brain working differently.
        
               | kortilla wrote:
               | Not really. The brain compensates in communication skills
               | since it has no auditory processing to deal with.
               | 
               | But it's otherwise normal. They don't magically become
               | extremely technical or have other specific positive
               | traits that come from being deaf.
        
               | pie_flavor wrote:
               | Lacking a sense that someone else has is
               | straightforwardly negative. If being able to hear isn't
               | better than not being able to hear, then nothing at all
               | can be said to be better than anything else. Whether
               | Asperger's is different is irrelevant.
        
             | TRiG_Ireland wrote:
             | There are few things that make me angrier than people who
             | have very strong opinions on subjects they have only just
             | become aware of.
        
               | khazhoux wrote:
               | Where do you see in the parent comment that they've "only
               | just become aware of" this issue?
        
             | nashashmi wrote:
             | Do people and society with intentional lack of computers
             | make you angry as well because those people see benefits
             | for their culture not to have one? I think you believe
             | being disabled is a really bad situation but they believe
             | it is a heightening of other senses, and that is something
             | you cannot relate to.
        
           | rfrey wrote:
           | This is a super interesting comment, thank you. I am
           | certainly guilty of believing the deaf experience is inferior
           | to the hearing experience - but not because I think ASL is
           | lesser than spoken languages or deficient as a communication
           | channel. It's because deaf people don't hear music. I know
           | people can dance to the beat and often distinguish songs by
           | vibration patterns, but that is surely not equivalent to the
           | emotional and intellectual experience most people can have
           | listening to music.
           | 
           | Less important but similar: birdsong, the sound of crashing
           | waves, children laughing in a playground. Hearing brings us
           | much besides transfer of information.
           | 
           | On the other hand, from my brief number of ASL lessons (about
           | a years worth taken as an adult in my mid 20s) the facial
           | expressiveness inherent to ASL gives it something hearing
           | people don't get in normal conversation. But to me that's a
           | pretty small benefit compared to the things a deaf person is
           | missing.
           | 
           | I'd respect anybody who chose not to get treated for
           | themselves, but I think I'd be pretty judgy pretty quickly
           | for anybody who tried to deny or dissuade anybody else from
           | becoming hearing, including their children.
        
           | pcthrowaway wrote:
           | > But again -- people who live in the deaf cultural world --
           | they do not feel that, and they don't feel disabled because,
           | in their context, they aren't
           | 
           | I can respect resisting pressure to be part of the hearing
           | world, but there are certainly ways in which deafness impacts
           | one's safety and opportunities. Not being able to hear
           | sirens, or oncoming trucks, or cars honking their horns, or
           | cyclists saying "on your left", or fire alarms makes the
           | world less safe for you (and for others who may have the
           | expectation you can hear them)
           | 
           | I'm certainly not saying this to suggest people should be
           | _forced_ to join the world of the hearing if given the
           | option, but I _do_ think doing so would be the responsible
           | option, if it 's a readily available one.
           | 
           | Kind of like I don't expect people to learn other languages
           | than their native tongue, even when it's a language spoken by
           | the majority in their place of residence. But if you don't
           | speak the language spoken by the majority, and are presented
           | with the opportunity to instantly learn it (like "I know Kung
           | Fu"-Matrix style), I certainly think it would be more
           | responsible to do so.
        
             | zie wrote:
             | > I can respect resisting pressure to be part of the
             | hearing world, but there are certainly ways in which
             | deafness impacts one's safety and opportunities.
             | 
             | I agree, but that's not a result of me being deaf, it's a
             | result of the hearing world just blindly assuming everyone
             | can hear these things. People screw up hearing sirens or
             | "on your left" or whatever ALL the time, even if they are
             | hearing (distracted, headphones, etc).
             | 
             | If we took away the assumption that everyone can hear
             | everything all the time, it would help everyone, not just
             | people who are deaf.
             | 
             | For instance, studies show that subtitles/captions being
             | always on helps retention of the information you just
             | watched[0]. Yet subtitles/captions not even being included
             | is still the default for many types of media. When captions
             | are included, often times they are wrong, either subtly or
             | grossly. Even in education settings where one would think
             | people want the information retained pretty much never ever
             | bother to include or turn on captions. Despite decades of
             | studies saying captions help a lot.
             | 
             | Go to your local home improvement store and try to buy a
             | battery powered smoke/fire alarm that will work for deaf
             | people. I'm betting despite lots of options the chances are
             | basically 0 for finding one(yet they do exist in the
             | world). Finding one that works with wired 110V is a little
             | above zero. What if it was the other way around instead,
             | and it was hard/impossible to find a fire/smoke alarm that
             | didn't work for deaf/HoH people?
             | 
             | 0: UW-Madison did a comprehensive overview[0] of over 100
             | empirical studies in 2015 showing that captions are useful
             | for everyone, not just deaf/hard of hearing people. "The
             | empirical evidence is clear: Captions, also known as same-
             | language subtitles, benefit everyone who watches videos."
             | They recommended just always showing captions.
             | 
             | source:
             | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5214590/
        
             | perryprog wrote:
             | > Not being able to hear sirens, or oncoming trucks, or
             | cars honking their horns, or cyclists saying "on your
             | left".
             | 
             | For what it's worth, it's generally thought that deaf
             | drivers are safer drivers. See
             | https://www.handspeak.com/learn/280/.
             | 
             | > fire alarms
             | 
             | ADA requires fire alarms to include visual alarms (as in
             | flashing strobes) for this reason.
        
           | magicalhippo wrote:
           | > culturally deaf world
           | 
           | What's this defined as? Keeping away from all non-deaf
           | people?
        
             | retrac wrote:
             | That happens naturally, due to the language barrier. I'd
             | suggest a definition of "culturally deaf" as having sign
             | language as your native language.
        
             | UltraSane wrote:
             | The culture unique to native ASL users.
        
           | UltraSane wrote:
           | I truly sympathize with deaf people not feeling disabled due
           | to how well modern US culture has adapted to their needs but
           | hearing is essentially a superpower compared to total
           | deafness.
        
         | vasusen wrote:
         | I am not from the deaf community, but my son has severe hearing
         | loss. I really look forward to a world where condition like his
         | simply becomes fixable like bad teeth and he doesn't have to
         | miss out on so many things.
        
         | ezfe wrote:
         | I have severe hearing loss and that animosity is so stupid.
         | 
         | My handicap is handled very well by my hearing aids and
         | everyone should have that opportunity.
        
         | zie wrote:
         | It's a double edged sword, because it shrinks the already small
         | deaf/HoH population and we can't yet eradicate hearing like we
         | can smallpox(completed), polio(mostly gone), etc.
         | 
         | It's awesome that it works for some people, just like CI's work
         | for some people(but not all).
         | 
         | Until we can restore hearing(or insert favourite disability
         | here), to everyone, it's going to be controversial inside of
         | those communities, because it makes our already smaller world,
         | smaller. Which causes lots of emotions as you can imagine.
         | 
         | That doesn't mean our world has to be smaller, even now. There
         | are lots of things we can do to make deaf people's worlds
         | bigger(and again, insert any other disability here). We choose
         | not to do them because some people think they are hard, some
         | people think they are expensive and some people think it's not
         | needed.
         | 
         | Perhaps some of that is true, for some items on the massive
         | list.
         | 
         | "Blindness separates people from things; deafness separates
         | people from people." - Helen Keller
         | 
         | Deafness doesn't _have_ to separate people from people, but it
         | does.
         | 
         | Until we can eradicate XXX disability completely(unlikely) we
         | should as a society strive to make their worlds bigger, not
         | smaller. Sadly so many people don't feel that way, for various
         | reasons.
        
       | jonathanlb wrote:
       | This is great news. Hopefully this will be expanded to other
       | forms deafness like those caused by ototoxic medication, ear
       | infections, and general sensorineural hearing loss.
        
         | im3w1l wrote:
         | This particular study looks like it's dealing with a pretty
         | narrow condition and solution (protein missing - add gene for
         | protein). I don't think this particular research can be
         | extended the way you hope.
        
           | jonathanlb wrote:
           | I agree. The causes of deafness I mentioned are diverse and
           | fall outside the specific focus of this current study.
           | Ideally, future research will address deafness caused by
           | these and other other factors.
        
           | janeerie wrote:
           | Yes, I would really like to see research targeting Connexin
           | 26, since it's the most common cause of hearing loss, but it
           | seems it's much more difficult to "cure."
        
       | smath wrote:
       | Regeneron had announced positive results in its gene therapy drug
       | for deafness in Feb 2025: https://investor.regeneron.com/news-
       | releases/news-release-de...
        
       | thomassmith65 wrote:
       | It's good that the article title doesn't use "congenital
       | deafness", but it would be even better if it were simply
       | "Deafness Cured!" /s
        
       | max_ wrote:
       | I see alot of advances powered by genetics now days.
       | 
       | Is there a specific field in genetics pushing this?
       | 
       | I used to hear buzz about CRISPER/CAS9 is it what is underlying
       | most of these advancements?
       | 
       | How come alot of gene editing stocks have taken a serious beating
       | if the tech is so good.
       | 
       | Many, many gene editing stocks have lost more than 90% of thier
       | value since IPO.
        
         | searine wrote:
         | The tech behind this is not new or difficult. The issues are
         | related to safety and regulation. Early efforts in gene therapy
         | had disastrous results and current treatments are not trying to
         | repeat past mistakes.
         | 
         | There is tremendous potential for gene therapy to cure disease,
         | however it needs (and so far has had) strict regulation,
         | particularly if the changes can be inherited.
        
           | beambot wrote:
           | > Early efforts in gene therapy had disastrous results
           | 
           | Can you share examples...? Just curious as an outsider
           | looking in.
        
             | ortusdux wrote:
             | https://pharmaceutical-journal.com/article/feature/gene-
             | ther...
             | 
             | "The most notable obstacle faced in the gene therapy field
             | was that of Gelsinger in 1999, who is understood to have
             | died after his body overreacted to the adenovirus vector.
             | Gelsinger had a rare disorder in which the liver lacks a
             | functional copy of the ornithine transcarbamylase (OTC)
             | gene and, consequently, the body is unable to eliminate
             | ammonia, a toxic breakdown product of protein metabolism."
             | 
             | "A gene therapy for children with severe combined
             | immunodeficiency (SCID) was delivered [to two independent
             | groups in London and Paris] and was incredibly successful,"
             | explains Griesenbach. "But, [in 2008; between three and six
             | years later], a small proportion of children [in Paris]
             | developed leukaemia induced by the vector, which had
             | inserted itself into a gene that controls cell division [4]
             | ."
        
       | S4H wrote:
       | How challenging is it for a person who has been deaf for let's
       | say 20 years to suddenly regain hearing?
        
         | jallmann wrote:
         | I can't say anything about the specifics of this treatment, but
         | in terms of their ability to fully benefit from hearing, it
         | would depend on when they became deaf, and the severity of
         | their deafness.
         | 
         | If they were born deaf, or lost hearing as a young child during
         | the language development stage, then it would probably be a
         | long adjustment. Things would just be noise and it would take a
         | lot of training to distinguish sounds, speech, etc. And unlike
         | a cochlear implant, you couldn't just take it off to give your
         | brain a rest.
         | 
         | If they had hearing loss later in life, or some residual
         | hearing, then they probably have a better chance of re-
         | adjusting to hearing.
        
       | squigz wrote:
       | You know, whenever treatment for autism comes up, we get a lot of
       | comments heavily suggesting curing autism is basically eugenics.
       | 
       | Why is it that some things are seen as a disability we should try
       | to fix in our children, and others - which are in many ways just
       | as debilitating - seen as some kind of beautiful part of
       | humanity?
        
         | joefourier wrote:
         | Autism is a spectrum disorder and I don't think it should be
         | controversial to cure low functioning autism. However, high
         | functioning autists can be argued to be more of a personality
         | variant than a disability, with different strengths and
         | weaknesses compared to neurotypical people. Society benefits
         | greatly from supporting high functioning autistic people in
         | say, technical fields where hyperfocus, narrow obsessions and
         | systemising thinking are an advantage.
         | 
         | Meanwhile, having a genetic condition like haemophilia doesn't
         | give you any conceivable advantage.
        
           | squigz wrote:
           | > Society benefits greatly from supporting high functioning
           | autistic people in say, technical fields where hyperfocus,
           | narrow obsessions and systemising thinking are an advantage.
           | 
           | At the expense of those people having to live with all the
           | unmentioned negative aspects of autism.
           | 
           | (To say nothing of whether those are actually positives or
           | not. Personally, I don't see how hyperfixating on something
           | for a few weeks at a time at the expense of all my other
           | responsibilities is a superpower, but hey)
        
           | iteria wrote:
           | I don't even think there should be a conversation around high
           | functioning autistics. My kid suffers from autistic
           | catatonia. She's also extremely high functioning. I'm sorry,
           | there is no world where I'm going to say no thanks to a cure
           | for my daughter's body suddenly locking into place for an
           | unknown period of time or losing the ability to speak or
           | function randomly or hell just understand human expression
           | without intense intervention. We can argue about their
           | special brain powers or whatever, but all I'm seeing is that
           | high functioning autistic have a much higher rate of self-
           | harm and suicide. It can't be that great.
        
           | guerrilla wrote:
           | > Meanwhile, having a genetic condition like haemophilia
           | doesn't give you any conceivable advantage.
           | 
           | Sickle-cell anemia does though. I wonder if some day there
           | _could_ be a survival advantage for haemophilia. What if we
           | erase the genetic code that ends up saving us from some alien
           | virus, you know?
           | 
           | I'm not saying this is a good argument, just something
           | interesting to think about.
        
       | jhaddow wrote:
       | How would one find out if they have this type of hearing loss? I
       | have moderate to severe hearing loss in both ears since birth and
       | there's never been an attempt that I'm aware of to diagnose the
       | cause beyond a standard inner ear examination.
        
         | apt-apt-apt-apt wrote:
         | Asking your ear doctor seems like a good idea for this, rather
         | than random people on HN..
        
           | jhaddow wrote:
           | Do you want to be my ENT?
        
         | codytruscott wrote:
         | Whole Genome Sequencing is affordable now. I'd suggest a 20x
         | hifi long read from broad clinical labs for $1200 or so. Use
         | opencravet to dig into the results. They just posted a webinar
         | for personal analysis https://wse.zoom.us/webinar/register/WN_-
         | VvYJ8FKRcGaKCQtLFrU...
         | 
         | Franklin by genoox is a slicker and possibly more approachable
         | product depending on your interface preferences.
         | 
         | Genetic research -- due to the number and subtly of variants --
         | is ripe for citizen science in my opinion.
        
           | gavinray wrote:
           | As a follow-on to this:
           | 
           | If you have partial genome data from 23andMe, Ancestry, etc,
           | you can use what's called "genomic imputation" to do a sort
           | of probabilistic gap-filling in your genome.
           | 
           | It's a bit tricky to do yourself, but there are paid services
           | that will run the imputation for you and share the results.
           | 
           | I paid $15 for mine at https://dnagenics.com
           | 
           | ---
           | 
           | @codytruscott I signed up for that webinar, I hadn't heard of
           | this tool before, thanks!
           | 
           | Got any other useful links/tools to share by chance?
        
             | codytruscott wrote:
             | Rather than 23andMe, Ancestry ($50-$100) etc => imputation,
             | broad clinical labs offers exome + genome blended for $120.
             | 
             | https://usegalaxy.org is pretty remarkable and provides
             | access to a ton of open source bioinformatics tools +
             | compute to process the files.
             | 
             | I really think the $1200 20x pacbio from broad is worth it
             | if you are going to make it serious hobby.
        
           | beaugunderson wrote:
           | the site i maintain is a bit out of date, but i accept PRs if
           | you have time to add the broad clinical labs data!
           | 
           | https://whichgenome.com/
        
         | invalidOrTaken wrote:
         | asking chatgpt, it seems like the filters are
         | 
         | 1) symptomatic ("OTOF-related hearing loss is usually
         | prelingual, severe-to-profound, and non-progressive.")
         | 
         | 2) family history (the gene mutation in question is not sex-
         | linked andd must come from _both_ parents, though either /both
         | could just be recessive carriers of the gene)
         | 
         | 3) genetic testing at a lab
        
       | coolKid721 wrote:
       | okay can we cure tinnitus please
        
       | froggertoaster wrote:
       | What immediately sprung to mind is how the deaf community has
       | seen things like this as a personal and existential threat.
       | 
       | To me it's an obvious disability, and deaf people SHOULD want to
       | be cured, but tribalism wins that argument all too often.
        
       | UltraSane wrote:
       | This is interesting because the quack who created Chiropractic
       | wrongly thought he cured deafness with spinal manipulation. Just
       | shows how powerful the real scientific method is.
        
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