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.
Gene therapy restored hearing in deaf patients
41–50 of 98 posts
Re: Gene therapy restored hearing in deaf patients
#42Earlier quoted context omitted.
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…
> 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",…
> 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/
Re: Gene therapy restored hearing in deaf patients
#43Anyone 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…
> culturally deaf world
What's this defined as? Keeping away from all non-deaf people?
Re: Gene therapy restored hearing in deaf patients
#44Earlier quoted context omitted.
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 dire…
> 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.
Re: Gene therapy restored hearing in deaf patients
#45okay can we cure tinnitus please
Re: Gene therapy restored hearing in deaf patients
#46I 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.
Re: Gene therapy restored hearing in deaf patients
#47How 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.
Asking your ear doctor seems like a good idea for this, rather than random people on HN..
Re: Gene therapy restored hearing in deaf patients
#48Earlier quoted context omitted.
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…
> 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.
Re: Gene therapy restored hearing in deaf patients
#49How 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.
Re: Gene therapy restored hearing in deaf patients
#50Anyone 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
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.