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Gene therapy restored hearing in deaf patients

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Re: Gene therapy restored hearing in deaf patients

#31

Post by pcthrowaway »

retrac wrote: post #16
d0100 wrote: post #4

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…

> 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.

Re: Gene therapy restored hearing in deaf patients

#32

Post by BeetleB »

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…

> 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.

Re: Gene therapy restored hearing in deaf patients

#33

Post by joefourier »

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 and systemising thinking are an advantage.

Meanwhile, having a genetic condition like haemophilia doesn’t give you any conceivable advantage.

Re: Gene therapy restored hearing in deaf patients

#34

Post by squigz »

BeetleB wrote: post #32
squigz wrote: post #26

Earlier quoted context omitted.

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…

> 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 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.

Re: Gene therapy restored hearing in deaf patients

#35

Post by pie_flavor »

BeetleB wrote: post #20
bigstrat2003 wrote: post #18

Earlier quoted context omitted.

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 doin…

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 def…

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.

Re: Gene therapy restored hearing in deaf patients

#36

Post by squigz »

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…

> 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)

Re: Gene therapy restored hearing in deaf patients

#37

Post by khazhoux »

TRiG_Ireland wrote: post #24
bigstrat2003 wrote: post #18

Earlier quoted context omitted.

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 doin…

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?

Re: Gene therapy restored hearing in deaf patients

#38

Post by iteria »

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…

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.

Re: Gene therapy restored hearing in deaf patients

#39

Post by nashashmi »

bigstrat2003 wrote: post #18
retrac wrote: post #16

Earlier 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…

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 doin…

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.

Re: Gene therapy restored hearing in deaf patients

#40

Post by searine »

max_ wrote: post #17

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.

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