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Deaf girl is cured in world first gene therapy trial

independent.co.uk

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Re: Deaf girl is cured in world first gene therapy trial

#101

Post by dandanua »

ForrestN wrote: post #88

As a disabled person, I admit to being made slightly uncomfortable by the uncritical framing of genetically modified people as "therapy" that all people should want. Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics? If we have statistics that taller people have better outcomes in life, should we do gene therapy to make sure everyone is taller than 6'? How much diversit…

In the current state of the world ethics is faked. Survival is everything. AI will be used for weapons and for power grab by politicians and billionaires (e.g. through mass manipulation). Gene "fixing" will be used by those who can afford it, 100%. Today everyone wants to be better, stronger and smarter. Otherwise you and your offspring (if any) are doomed to stay in lower castes of society for ages. Be sure the top castes will arrange that.

Re: Deaf girl is cured in world first gene therapy trial

#102

Post by scottlamb »

ggreer wrote: post #59
silverquiet wrote: post #24

Earlier quoted context omitted.

I don't really know enough of the medical details - I thought people with color blindness lacked the proper receptors in their eyes, so it's not like in the article where a connection is restored; you'd have to grow new infrastructure in the eye which seems a bit more complicated. Nevertheless, would be very cool if possible - I know lots of men with color blindness.

In color blindness, the cone cells produce an incorrect opsin protein that isn't sensitive to red (or is sensitive to a frequency close to green). Gene therapy would fix that, though it'd probably take a while for the brain to understand the new information. The main reason this therapy isn't available is because the FDA has decided that the risks of gene therapy aren't worth the benefit of curing color blindness. I…

> The main reason this therapy isn't available is because the FDA has decided that the risks of gene therapy aren't worth the benefit of curing color blindness. I agree with that evaluation, but I also think mavericks should be allowed to try curing their own colorblindness (assuming they had informed consent and paid for the therapy themselves).

In what way do you agree with that evaluation then? The FDA certainly doesn't force anyone to undergo a treatment. And my understanding was the FDA doesn't decide who pays for a given treatment. In particular I don't think they define what medical insurance companies (or Medicare/Medicaid) have to pay for, do they? I think they just say whether the treatment is ethical to be performed at all. So when you say that mavericks should be allowed to try it, I think you're simply disagreeing with them?

Re: Deaf girl is cured in world first gene therapy trial

#103

Post by [deleted] »

ForrestN wrote: post #88

As a disabled person, I admit to being made slightly uncomfortable by the uncritical framing of genetically modified people as "therapy" that all people should want. Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics? If we have statistics that taller people have better outcomes in life, should we do gene therapy to make sure everyone is taller than 6'? How much diversit…

[deleted]

Re: Deaf girl is cured in world first gene therapy trial

#104

Post by legohead »

ForrestN wrote: post #88

As a disabled person, I admit to being made slightly uncomfortable by the uncritical framing of genetically modified people as "therapy" that all people should want. Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics? If we have statistics that taller people have better outcomes in life, should we do gene therapy to make sure everyone is taller than 6'? How much diversit…

Designer babies are fine with me. If I could make a handsome, strong as an ape, genius, healthy baby, I'd do it! I'd do the same for me.

If there's a moral sticking point, for me it would be about the cost and privilege it assumes. We still have a very long ways to go before that is figured out...but if we have genius level babies, maybe they can do it for us.

Re: Deaf girl is cured in world first gene therapy trial

#105

Post by jonasdegendt »

dotnet00 wrote: post #45
maratc wrote: post #37

Yuval Harari makes an interesting point in one of his books: that many kinds of these inventions always start as a way to treat people with some kind of a medical condition and bring them into the "median" spectrum, but there's no stopping there and the same inventions are then used to bring "median" people into the "super-human" spectrum. What happens next is that the "regular" humans have to compete with these "sup…

You say that as if this has happened before ("many kinds of these inventions always start as..."), but what conditions have actually had this happen? I can't think of anything that started as something to help bring people up to a median level, to then end up bringing median people into a super-human level. Everything we've done so far have all been ultimately limited by the human body, so things that bring people up…

Someone mentioned steroids, but Epogen is another example.

Re: Deaf girl is cured in world first gene therapy trial

#106

Post by vsuperpower2020 »

anthony__j wrote: post #18
foobarian wrote: post #4

[flagged]

i thought this as well! you wouldn't say "autism cured". to many this must seem like a semantic argument, but Deafness is an entire culture and identity with hundreds of years of history

They can call it anything they want, but the moment they leave their "culture" and try to police our language they have to justify it on facts and not just assert that they feel a certain way. It's completely irrelevant to medicine if they have a culture or identity based around their disability.

Re: Deaf girl is cured in world first gene therapy trial

#107

Post by silverquiet »

spondylosaurus wrote: post #95
ForrestN wrote: post #88

As a disabled person, I admit to being made slightly uncomfortable by the uncritical framing of genetically modified people as "therapy" that all people should want. Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics? If we have statistics that taller people have better outcomes in life, should we do gene therapy to make sure everyone is taller than 6'? How much diversit…

Also disabled, and this is a topic I've been chewing on a lot lately—I started writing up a longer comment but deleted it, lol. What I really want to say is that I have a few problems I would 100% cure in a heartbeat, and a few that I'm less sure about, so I get it. Some disabilities only have one true cure: fix the part of your body that's bad at its job. No amount of accomodation or acceptance is going to mitigate…

I'm actually in this position a bit. I'm still young(ish) with a serious hip condition that causes me some disability. There are options for replacement that could get me to near full function, but there are drawbacks and the shear fear of surgery and replacing part of my body with metal and plastic. If I was wheelchair-bound, I don't think it would be a hard choice, but I am able to essentially do most of the things I need to do at least as I am. And so I put it off and put it off.

Re: Deaf girl is cured in world first gene therapy trial

#108

Post by ImJamal »

ForrestN wrote: post #88

As a disabled person, I admit to being made slightly uncomfortable by the uncritical framing of genetically modified people as "therapy" that all people should want. Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics? If we have statistics that taller people have better outcomes in life, should we do gene therapy to make sure everyone is taller than 6'? How much diversit…

I think there is an easy line. We know what should occur with certain parts of the body. Ears should be able to hear so when they don't we know there is a problem.

There isn't a height in order to function properly or something like that. If somebody is 5 feet or 6 feet they are still capable of having their whole body function. Yes, they may have issues due to their height but their body still works correctly. (Extreme heights, both tall and short, may cause issues and there could be conversations around that, but within the normal range there isn't any sort of function of the body that doesn't work)

Re: Deaf girl is cured in world first gene therapy trial

#109

Post by wizzwizz4 »

macksd wrote: post #64
anthony__j wrote: post #29

Earlier quoted context omitted.

to you, this is a pedantic argument. but to millions of Deaf people in the US alone, this is a very important political point. for example, lots of Deaf people who prefer to live without cochlear implants face lots of pressure from people who consider deafness to be a "disease" to be "cured", when in fact, they feel their most authentic way of living to be something different. in this way, language is significant

And people who do prefer to live with cochlear implants face pressure from the deaf community itself. You can't win. This was an achievement. A girl who probably saw this as a cure, saw success. Why can't we just be happy for her instead of detracting because others wouldn't make the same choice?

18-month-olds don't usually have opinions on what does or doesn't count as a 'cure': that's a bit too abstract for most of them. Their parents can.

Re: Deaf girl is cured in world first gene therapy trial

#110

Post by ImJamal »

virissimo wrote: post #90
ForrestN wrote: post #88

As a disabled person, I admit to being made slightly uncomfortable by the uncritical framing of genetically modified people as "therapy" that all people should want. Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics? If we have statistics that taller people have better outcomes in life, should we do gene therapy to make sure everyone is taller than 6'? How much diversit…

Perhaps we should have different words for voluntary (choosing to regain your hearing, etc...) and coercive (forced sterilization, etc...) "eugenics", since almost all of the negative connotations of the word are (rightly, IMO) attributed only to the latter.

Parents are going to choose these things for their kids though?
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