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.
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.
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."
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.
... and then there was this Phase-1 trial in Japan about re-growing missing teeth.
We're really making astonishing progress in many different areas in medicine these days. They are mostly pretty narrow, but also so awesome that ~20 years ago, many doctors would have called it science fiction.
I don't see how this represents the singularity. This is all humans doing work and building knowledge, much like it has always been. Can you point to a specific section of the article that elicits that assumption? Thanks
The general acceleration in research and outcomes, we're now fixing deep issues more and more often. And hardware / software improvements keep coming too, even outside of computing. Sorry if that sounded pompous but there's a slight feeling that we're not plateauing, quite the contrary.
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.
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.
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.
Thank you for this! My wife recently got a pathology report back reporting a rare variant of a rare cancer and I’m trying to get back into genomics (an almost masters degree) now to see if there’s anything my computering can do to aid. I’ve contacted Broad Clinical Labs.
Genomics-driven diagnosis of several (treatable) conditions is not science fiction anymore, but requires support from governments and national health systems. The technology is there, and can be scaled up.
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?
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.
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.
> 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)
> 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.
While I'm probably considered high-functioning autistic, I have seen the devastating effects autism can have on people less lucky than me. I don't know if I'd go for an autism cure myself, but if autism can be corrected for in the womb or right after birth, I would definitely be in favour. How necessary such a cure would be, depends on how extreme someone's autism is, and if the cure can be administered before their disability helps form and solidify their personality.
However, I think mental disorders like autism and physical ailments like deafness don't have the same ethical impact. One changes who a person is, the other changes what a person is capable of. It also depends on how bad the disability is; in this case, the kids showing most promise could already hear, though badly, and the treatment let them hear much better. I'm not even deaf but I'd happily take a treatment to fix whatever hearing damage I've collected over the years.
And for what it's worth, eugenics is already with us and that's actually not so evil. People carrying certain genetic diseases choose not to have (biological) kids all the time. Others still choose to risk it. As long as there isn't some large conspiracy about perfecting the human race behind it, eugenics can be helpful.
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.
"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] .”
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.
If they've been deaf from infancy, basically the entire hearing center of the brain is non-existent. So they'd be hearing sound, but processing it into meaningful content would not happen, if at all. So basically, its like having a cacophany of sound that you can't filter and process...
As for others, one thing hearing people, particularly monolingual hearing people, don't understand very well is that hearing != understanding. Just because you hear a sound doesn't automatically equate to it having meaning. The default for many people is to just SPEAK LOUDER and slower, which does not help in the vast majority of encounters
Really challenging. In some aspects it can be worse than to regain vision.
If you are not accustomed to sounds, they can be annoying, and may make you feel tired. The same can happen with vision, it is just too much, but you can close your eyes, and shut out vision stimuli. You can't do that with hearing. At least if you regain hearing with normal sensitivity, you can be overwhelmed by sounds of your body.
It is easier with implants, which can be shut off.
I have always felt that hearing problems are difficult to truly "cure" and that most people can only use hearing aids. But this study is really different. If the key protein can be repaired, those conditions that seemed unchangeable in the past may now have a chance of turning around. Both children and adults can benefit from it, and this medical progress is really impressive.
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.
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.
> 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.
> 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.
I'm all for high quality captions, and turn them on occasionally when dialog is hard to hear (or in another language, usually prefer to dubbing). I also don't doubt that they improve comprehension. But on average I find them distracting from the visuals and prefer to have them off by default.
Obviously it should be a preference one can toggle, regardless of the default setting. I think they would get a lot better if the default was on instead of off.
TikTok generally has captions, usually burned into the video clip, you can't turn them on/off.
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.
> 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 don't know ASL, so can you elaborate on this? Aren't facial expressions just as important for non-deaf people?
Facial expressions were mandatory in ASL, at least according to my teacher. The best analogy I can think of is of a tonal language, where raised eyebrows, a somewhat astonished look, or a frown with a furrowed brow are the tones.
> But you can't ignore the cultural consideration.
We can and should, the same way we ignore the corresponding "cultural consideration" that mothers who have undergone female genital mutilation themselves will feel alienated from their daughters if they do not inflict the same treatment on them. In this case, most people have no problem recognising that the rights of the daughter to enjoy her own sensory experience far outweigh the (quite real) emotional isolation that would be experienced by the parent -- so why is deafness treated differently?
Denying another person sensory experience is abuse. If that person is a child, it's child abuse. For me the harm inherent in this has nothing to do with whether sign languages are perceived as "real" languages on par with spoken languages. It's obvious to me as a hearing person that sign languages are indeed "real, full" languages, the same way written languages are, and, more generally, the same way that languages I don't personally understand but other people do, are. Sign languages are real, full languages -- and preventing a person who would be able to hear from hearing is still abuse.
I think the reason this is not called out more frequently and stridently by hearing people is that many of us fear being labeled "prejudiced" or worse, and being associated with the political right, who have a long history of making absolute moral claims about outgroups. It's simply an unusual quirk of our times that this specific quality of being seen as culturally presumptuous is the thing that no Right-Thinking Person wants to be seen doing right now, resulting in many otherwise intelligent people bending over backwards to avoid the stigma, even to the point of denying obvious realities like "a life that includes access to more sensory experience is a richer life".
ETA: To anyone who maintains that deaf parents should be able to prevent their children from being able to hear: Should illiterate parents be able to prevent their children from going to school? Should parents who grew up poor be able to starve their children?
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.
i recently realized that my neighborhood soccer teams arent constantly yelling at eachother about where they are, and that stopping to look for who to pass to is costing us games. i started yelling on their behalf a couple games back and we started shooting and scoring.
somebody who wants to remain deaf, couldnt play soccer at the same level as hearing people because they couldnt hear that information, even though their foot to ball skills might be amazing, and thats a travesty for soccer.
im sure theres lots of things we tend to not think of where hearing is a gigantic advantage, that the deaf arent able to use, and were missing out on their related skills because of it
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.
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.
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.
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...
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?
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.
> 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.
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.
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.
I apologize - I should've been more clear but I wasn't taking issue with your post. More that I've seen people in the past who don't want treatments for deafness to even be available, and your comment made me think of that position (which does quite upset me).
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.
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.
> 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.
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.
See - I don't get this. I've heard people mention it about the deaf community, but it just doesn't make sense to me - perhaps I'm missing something.
I have congenital hearing loss in both ears, and wear hearing aids. I don't know ASL (at least not well enough to use), as I am more or less able to function with hearing aids, with the usual caveats - background noise, group settings, still quite reliant on lip-reading and context to fill in gaps etc.
Within my financial means, I would glad pay to wave a magic wand and restore my ears to "normal". This gene therapy sounds interesting, but I'm not sure if that mutation is the cause of my hearing loss. And I'm always wary of side-effects, haha.
I do see my hearing loss as a disability - and no matter how much you try to dress it up, or with "don't diss my dis-ability" PR campaigns - it still does suck every day. I'm not saying you should discriminate against people for their disability - and I've steadfastly advocated for increased accessibility to level the playing field (e.g. in my workplace, at church, in the community). But I'm not exactly Matt Murdoch or Echo here.
And yes, I'm also "neuro-diverse" (starts with A) - and yes, I guess you could argue there's advantages there, under specific circumstances. But there's most definitely a penalty there.
I don't doubt your experience at all. The question I have for you is: Can you speak for all deaf people? I'm not saying everyone who is deaf is fine. But I do know that for many (even if a minority), it is fine, and it is different enough that they worry their kid will not have the experience they had, and may have a worse experience (in some ways) with hearing.
It's not a clear cut easy decision. I would say one should understand and respect the parents' decision. They know the factors way better than I do, and likely in many ways better than you do (especially as you don't know ASL).
I work with a deaf person (not born that way, but been that way most of her life). I'm sure she'd pay a hefty sum to get normal hearing - partially because her whole family (kids, etc) are not deaf. Even when she openly talks about the advantages of being deaf. If she did have a deaf child and chose treatment for her kid, I'd totally understand. But if she chose against it, I'd also totally understand.
What I don't get is people insisting they are totally wrong/evil for not pursuing the treatment for their kids. Almost always they don't understand the factors at play.
to be honest, you;'d have the same issues with that said magic wand and normalcy, because hearing aids do amplify sound and allow you to hear everythig.
You'd have the same issue, if not more, with background noise, group settings and context acquisition
Processing input is the hard part, if you're already having issues, that isn't going to go away
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.
No, because not having a computer isn't a distinct lack from one's natural capabilities in the way that deafness is. Moreover, my issue here isn't with people who don't want to cure their own deafness, it's with people who don't even want such cures to be available for others. So in the computer analogy this would be more like someone who tries to protest the existence of computers at all, rather than simply choosing to not get one
> distinct lack from one's natural capabilities in the way that deafness is.
The original commenter wanted to state that deafness can and should be seen as a natural occurrence, instead of a disability, that pushes people to better use other faculties. In the computer analogy, it would be someone who protests the use of computers entirely like for school children, to push them to use other skills.
I have a specific “disability” that I often cannot smell (because of allergies). I have learned to “feel” smell with my fingers running through the air. In such a situation, am I really disabled? Despite how important smell can be especially with spoiled foods? Few would think so. This deaf commenter sees his deafness in the same manner. And sees efforts to broaden people’s senses in the same manner as children being given calculators and computers at an early age.
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.
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.
Please rename this to "Gene therapy restored hearing in patients with autosomal recessive deafness" so as not to raise and then dash hopes of deaf HN readers
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.
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.
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."
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.
adjacent, same trend: https://news.ufl.edu/2024/09/blindness-gene-therapy/
... and then there was this Phase-1 trial in Japan about re-growing missing teeth.
We're really making astonishing progress in many different areas in medicine these days. They are mostly pretty narrow, but also so awesome that ~20 years ago, many doctors would have called it science fiction.
somehow it seems the singularity is here .. i hope it's well distributed
I don't see how this represents the singularity. This is all humans doing work and building knowledge, much like it has always been. Can you point to a specific section of the article that elicits that assumption? Thanks
I'm not super familiar with this, but I think many of the gene therapy advances did involve some form of machine learning to find relevant genes.
Some might also use protein folding simulations, and the best ways to do that involve narrow AI.
I'd love to hear from somebody in the medical research field how much AI/ML actually speeds up their progress.
The general acceleration in research and outcomes, we're now fixing deep issues more and more often. And hardware / software improvements keep coming too, even outside of computing. Sorry if that sounded pompous but there's a slight feeling that we're not plateauing, quite the contrary.
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.
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.
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?
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.
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/
Thank you for this! My wife recently got a pathology report back reporting a rare variant of a rare cancer and I’m trying to get back into genomics (an almost masters degree) now to see if there’s anything my computering can do to aid. I’ve contacted Broad Clinical Labs.
In the UK, Newborn hearing screening (https://www.nhs.uk/baby/newborn-screening/hearing-test/) is a mandatory test that happens in the first weeks of life.
Genomics-driven diagnosis of several (treatable) conditions is not science fiction anymore, but requires support from governments and national health systems. The technology is there, and can be scaled up.
With studies like this: https://www.genomicsengland.co.uk/initiatives/newborns
and initiatives like this: https://www.bbc.co.uk/news/articles/c1ljg7v0vmpo#:~:text=Eve...
Asking your ear doctor seems like a good idea for this, rather than random people on HN..
Do you want to be my ENT?
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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?
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.
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.
> 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)
> 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.
Some part of the deaf community would see the treatment in this article similarly to eugenics; erasing deaf culture.
While I'm probably considered high-functioning autistic, I have seen the devastating effects autism can have on people less lucky than me. I don't know if I'd go for an autism cure myself, but if autism can be corrected for in the womb or right after birth, I would definitely be in favour. How necessary such a cure would be, depends on how extreme someone's autism is, and if the cure can be administered before their disability helps form and solidify their personality.
However, I think mental disorders like autism and physical ailments like deafness don't have the same ethical impact. One changes who a person is, the other changes what a person is capable of. It also depends on how bad the disability is; in this case, the kids showing most promise could already hear, though badly, and the treatment let them hear much better. I'm not even deaf but I'd happily take a treatment to fix whatever hearing damage I've collected over the years.
And for what it's worth, eugenics is already with us and that's actually not so evil. People carrying certain genetic diseases choose not to have (biological) kids all the time. Others still choose to risk it. As long as there isn't some large conspiracy about perfecting the human race behind it, eugenics can be helpful.
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.
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.
> Early efforts in gene therapy had disastrous results
Can you share examples...? Just curious as an outsider looking in.
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] .”
How challenging is it for a person who has been deaf for let's say 20 years to suddenly regain hearing?
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.
If they've been deaf from infancy, basically the entire hearing center of the brain is non-existent. So they'd be hearing sound, but processing it into meaningful content would not happen, if at all. So basically, its like having a cacophany of sound that you can't filter and process...
As for others, one thing hearing people, particularly monolingual hearing people, don't understand very well is that hearing != understanding. Just because you hear a sound doesn't automatically equate to it having meaning. The default for many people is to just SPEAK LOUDER and slower, which does not help in the vast majority of encounters
Really challenging. In some aspects it can be worse than to regain vision.
If you are not accustomed to sounds, they can be annoying, and may make you feel tired. The same can happen with vision, it is just too much, but you can close your eyes, and shut out vision stimuli. You can't do that with hearing. At least if you regain hearing with normal sensitivity, you can be overwhelmed by sounds of your body.
It is easier with implants, which can be shut off.
I have always felt that hearing problems are difficult to truly "cure" and that most people can only use hearing aids. But this study is really different. If the key protein can be repaired, those conditions that seemed unchangeable in the past may now have a chance of turning around. Both children and adults can benefit from it, and this medical progress is really impressive.
Regeneron had announced positive results in its gene therapy drug for deafness in Feb 2025: https://investor.regeneron.com/news-releases/news-release-de...
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.
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.
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
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.
> 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.
> 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/
I'm all for high quality captions, and turn them on occasionally when dialog is hard to hear (or in another language, usually prefer to dubbing). I also don't doubt that they improve comprehension. But on average I find them distracting from the visuals and prefer to have them off by default.
Obviously it should be a preference one can toggle, regardless of the default setting. I think they would get a lot better if the default was on instead of off.
TikTok generally has captions, usually burned into the video clip, you can't turn them on/off.
> 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.
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.
> 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 don't know ASL, so can you elaborate on this? Aren't facial expressions just as important for non-deaf people?
Facial expressions were mandatory in ASL, at least according to my teacher. The best analogy I can think of is of a tonal language, where raised eyebrows, a somewhat astonished look, or a frown with a furrowed brow are the tones.
> But you can't ignore the cultural consideration.
We can and should, the same way we ignore the corresponding "cultural consideration" that mothers who have undergone female genital mutilation themselves will feel alienated from their daughters if they do not inflict the same treatment on them. In this case, most people have no problem recognising that the rights of the daughter to enjoy her own sensory experience far outweigh the (quite real) emotional isolation that would be experienced by the parent -- so why is deafness treated differently?
Denying another person sensory experience is abuse. If that person is a child, it's child abuse. For me the harm inherent in this has nothing to do with whether sign languages are perceived as "real" languages on par with spoken languages. It's obvious to me as a hearing person that sign languages are indeed "real, full" languages, the same way written languages are, and, more generally, the same way that languages I don't personally understand but other people do, are. Sign languages are real, full languages -- and preventing a person who would be able to hear from hearing is still abuse.
I think the reason this is not called out more frequently and stridently by hearing people is that many of us fear being labeled "prejudiced" or worse, and being associated with the political right, who have a long history of making absolute moral claims about outgroups. It's simply an unusual quirk of our times that this specific quality of being seen as culturally presumptuous is the thing that no Right-Thinking Person wants to be seen doing right now, resulting in many otherwise intelligent people bending over backwards to avoid the stigma, even to the point of denying obvious realities like "a life that includes access to more sensory experience is a richer life".
ETA: To anyone who maintains that deaf parents should be able to prevent their children from being able to hear: Should illiterate parents be able to prevent their children from going to school? Should parents who grew up poor be able to starve their children?
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.
> culturally deaf world
What's this defined as? Keeping away from all non-deaf people?
That happens naturally, due to the language barrier. I'd suggest a definition of "culturally deaf" as having sign language as your native language.
The culture unique to native ASL users.
i see an opportunity cost.
i recently realized that my neighborhood soccer teams arent constantly yelling at eachother about where they are, and that stopping to look for who to pass to is costing us games. i started yelling on their behalf a couple games back and we started shooting and scoring.
somebody who wants to remain deaf, couldnt play soccer at the same level as hearing people because they couldnt hear that information, even though their foot to ball skills might be amazing, and thats a travesty for soccer.
im sure theres lots of things we tend to not think of where hearing is a gigantic advantage, that the deaf arent able to use, and were missing out on their related skills because of it
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.
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.
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.
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...
Abuse by who? It's themselves who are against adopting it. It's just autonomy at work.
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.
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.
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?
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.
> 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.
> 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.
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.
I apologize - I should've been more clear but I wasn't taking issue with your post. More that I've seen people in the past who don't want treatments for deafness to even be available, and your comment made me think of that position (which does quite upset me).
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.
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.
> 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.
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.
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.
See - I don't get this. I've heard people mention it about the deaf community, but it just doesn't make sense to me - perhaps I'm missing something.
I have congenital hearing loss in both ears, and wear hearing aids. I don't know ASL (at least not well enough to use), as I am more or less able to function with hearing aids, with the usual caveats - background noise, group settings, still quite reliant on lip-reading and context to fill in gaps etc.
Within my financial means, I would glad pay to wave a magic wand and restore my ears to "normal". This gene therapy sounds interesting, but I'm not sure if that mutation is the cause of my hearing loss. And I'm always wary of side-effects, haha.
I do see my hearing loss as a disability - and no matter how much you try to dress it up, or with "don't diss my dis-ability" PR campaigns - it still does suck every day. I'm not saying you should discriminate against people for their disability - and I've steadfastly advocated for increased accessibility to level the playing field (e.g. in my workplace, at church, in the community). But I'm not exactly Matt Murdoch or Echo here.
And yes, I'm also "neuro-diverse" (starts with A) - and yes, I guess you could argue there's advantages there, under specific circumstances. But there's most definitely a penalty there.
I don't doubt your experience at all. The question I have for you is: Can you speak for all deaf people? I'm not saying everyone who is deaf is fine. But I do know that for many (even if a minority), it is fine, and it is different enough that they worry their kid will not have the experience they had, and may have a worse experience (in some ways) with hearing.
It's not a clear cut easy decision. I would say one should understand and respect the parents' decision. They know the factors way better than I do, and likely in many ways better than you do (especially as you don't know ASL).
I work with a deaf person (not born that way, but been that way most of her life). I'm sure she'd pay a hefty sum to get normal hearing - partially because her whole family (kids, etc) are not deaf. Even when she openly talks about the advantages of being deaf. If she did have a deaf child and chose treatment for her kid, I'd totally understand. But if she chose against it, I'd also totally understand.
What I don't get is people insisting they are totally wrong/evil for not pursuing the treatment for their kids. Almost always they don't understand the factors at play.
to be honest, you;'d have the same issues with that said magic wand and normalcy, because hearing aids do amplify sound and allow you to hear everythig.
You'd have the same issue, if not more, with background noise, group settings and context acquisition
Processing input is the hard part, if you're already having issues, that isn't going to go away
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.
No, because not having a computer isn't a distinct lack from one's natural capabilities in the way that deafness is. Moreover, my issue here isn't with people who don't want to cure their own deafness, it's with people who don't even want such cures to be available for others. So in the computer analogy this would be more like someone who tries to protest the existence of computers at all, rather than simply choosing to not get one
> distinct lack from one's natural capabilities in the way that deafness is.
The original commenter wanted to state that deafness can and should be seen as a natural occurrence, instead of a disability, that pushes people to better use other faculties. In the computer analogy, it would be someone who protests the use of computers entirely like for school children, to push them to use other skills.
I have a specific “disability” that I often cannot smell (because of allergies). I have learned to “feel” smell with my fingers running through the air. In such a situation, am I really disabled? Despite how important smell can be especially with spoiled foods? Few would think so. This deaf commenter sees his deafness in the same manner. And sees efforts to broaden people’s senses in the same manner as children being given calculators and computers at an early age.
There are few things that make me angrier than people who have very strong opinions on subjects they have only just become aware of.
Where do you see in the parent comment that they've "only just become aware of" this issue?
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.
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.
That was my first thought too. I wonder how many people would choose to stay deaf just to stay in the community.
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.
The research study is behind a paywall: https://doi.org/10.1038/s41591-025-03773-w
I'm always amazed that some people still choose to publish in paywalled journals.
okay can we cure tinnitus please
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If this is a joke it's in extremely bad taste
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
Without sarcasm:
Please rename this to "Gene therapy restored hearing in patients with autosomal recessive deafness" so as not to raise and then dash hopes of deaf HN readers
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