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Gene therapy restored hearing in deaf patients

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Re: Gene therapy restored hearing in deaf patients

#51

Post by smaudet »

MintPaw wrote: post #22
retrac wrote: post #19

Earlier quoted context omitted.

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…

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...

Re: Gene therapy restored hearing in deaf patients

#52

Post by jhaddow »

apt-apt-apt-apt wrote: post #47
jhaddow wrote: post #41

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.

Asking your ear doctor seems like a good idea for this, rather than random people on HN..

Do you want to be my ENT?

Re: Gene therapy restored hearing in deaf patients

#53

Post by ortusdux »

beambot wrote: post #46
searine wrote: post #40

Earlier quoted context omitted.

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] .”

Re: Gene therapy restored hearing in deaf patients

#54

Post by guerrilla »

MintPaw wrote: post #22
retrac wrote: post #19

Earlier quoted context omitted.

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…

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.

Abuse by who? It's themselves who are against adopting it. It's just autonomy at work.

Re: Gene therapy restored hearing in deaf patients

#55

Post by guerrilla »

joefourier wrote: post #33
squigz wrote: post #28

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 an…

> 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.

Re: Gene therapy restored hearing in deaf patients

#57

Post by smaudet »

squigz wrote: post #34
BeetleB wrote: post #32

Earlier quoted context omitted.

> 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).…

> 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 s…

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.

Re: Gene therapy restored hearing in deaf patients

#58

Post by codytruscott »

jhaddow wrote: post #41

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.

Re: Gene therapy restored hearing in deaf patients

#59

Post by smaudet »

squigz wrote: post #26
retrac wrote: post #19

Earlier quoted context omitted.

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…

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 aspec…

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.

Re: Gene therapy restored hearing in deaf patients

#60

Post by invalidOrTaken »

jhaddow wrote: post #41

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.

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