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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

#131

Post by yieldcrv »

delinom wrote: post #39
thehappypm wrote: post #9

I’m optimistic that at some point, I’ll be able to get a treatment to take care of my red green color blindness. I’m well aware that it’s very much a first world problem, and rightfully should be very low on the totem pole of medical issues to cure. But goddamnit, I want to see red.

Have you tried color blindness glasses (e.g. EnChroma)? I am not familiar with them but some reaction videos were pretty heartwarming.

> but some reaction videos were pretty heartwarming

shameful marketing campaign

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

#132

Post by jerf »

yakovsi wrote: post #66
tantalor wrote: post #43

Earlier quoted context omitted.

Those videos are fake the glasses don't do very much. https://www.youtube.com/watch?v=RY-NF_7R-pk&t=559

Colorblind person here. This debunking video is piling on more BS, like oh, colorblind people learned to be amazing at detecting slight color changes! No, we are not. We learned what names are attached to what color, but we see them differently, much poorer (save for blues). Enchroma apparently helps with separation, as parent comment suggests. That being said, the fake dramatic videos are definitely shameful scam, a…

What boggles my mind a bit is that true colorblindness glasses don't seem that difficult to me. Standard red-blue 3d glasses almost do it, it's just you need red-green differentiating glasses. I don't think this would Open the World of Color!, but it would with a bit of practice probably allow you to at least perceive a difference.

But the glasses need to be visibly-differently (to a non-color-blind person) tinted. If they look the same, they're not going to work. Just like a "blue-reducing" pair of glasses needs to look visibly yellow, or it clearly (in all senses of the term) isn't doing anything.

A truly optimal pair would take some sciencing but bashing something prototype-quality with something like https://www.amazon.com/dp/B0928YT83C would be a matter of holding up the cyan-ist of the films up to one eye and the magenta-ist of the films to the other, and looking at some red and green things, concentrating on which eye the object is bright in.

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

#133

Post by dekhn »

dotnet00 wrote: post #116
unsupp0rted wrote: post #69

Every time I hear about a new medical discovery or treatment, I think "yeah right, maybe in 15 years". Well, here we finally are. Our ancestors, and I mean great-grandparents and grandparents, would call us gods.

It is interesting to wonder if they'd call us gods in a good way though. Perhaps they might see it as 'playing god' instead. HN being a techie crowd tends to skew this a bit, but it's worth remembering that genetic engineering is still pretty controversial to the average person: https://www.pewresearch.org/internet/2022/03/17/americans-ar...

When I was 18 (early 90s) and applying for university, the admissions office asked me what I wanted to do and I said "play god with DNA". Sure it sounds arrogant, but I knew that gene therapy would become a thing and if it worked, eventually people would apply it recreationally (by which I mean, to change your phenotype, or your future children's phenotype, for non-disease purposes).

I went into that field and spent a couple decades learning how to do it. My only conclusion at the end was that it would only be considered societally acceptable for diseases, not recreation, for the foreseeable future, and even things that seem "easy" (like fixing retinitis pigmentosa) are in fact fractally challenging. As much as I would like to have chromatophore tattoos, we're just not in a place where we can justify this (even self-experimentation) because it's really hard to know if your intervention had the effect you desired, and no other effects.

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

#134

Post by skybrian »

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…

Here is a framework for thinking about it: raising population-level concerns and using them to justify laws restricting what children parents can have (or not have) seems like the pro-eugenics side. The reproductive freedom side is to take a laissez-faire attitude on how the human population changes. Let parents choose the children they want to have and it will probably work out.

That doesn't make the issues easy. There are some forms of state coercion that people are sympathetic to. For example, in India, there is unfortunately a strong preference for male children, and there are laws to prevent sex selection. This is obviously reducing people's reproductive freedom because there's a state interest in a balanced sex ratio.

Another example of state coercion that people are unsympathetic to is China, where the state had an interest in reducing population growth and imposed a one-child policy. Seems like that's eugenics? It's imposing personal hardship for a population-level concern.

Along these lines, I'm wary of population-level concerns like "will deaf people die out." What could the state do about it? At the individual parent level, nobody should have to raise a deaf child if they don't want to, when it's unnecessary.

But a tough case for the reproductive freedom side is: can deaf parents use prenatal testing to select for deaf children, if that's what they want? That's not a population-level concern, it's personal: specific parents want a deaf child. A lot of people have trouble with that kind of reproductive freedom when they wouldn't have an issue with wanting a boy or girl, because deliberately causing deafness sure seems bad for that child.

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

#135

Post by boxed »

lioeters wrote: post #27
foobarian wrote: post #4

[flagged]

I used to live in Texas near the biggest deaf school in the U.S. From my understanding, some people in the deaf community do consider the word "cured" to be offensive because they don't consider their condition to be a disease. I don't know if that's the dominant view and preference, but if that's the case, perhaps we should all learn to respect their culture, as much as we're all learning to respect (up to some poin…

The same people who say we should respect deaf culture or trans rights are the same people who got super offended at transracial people (https://en.wikipedia.org/wiki/Rachel_Dolezal).

I can't take this too seriously. Either you accept transracial, transsexual, and amputee wannabees, or you don't. I do. Activists generally it seems don't, or at least the ones screaming the loudest.

We can also all admit that something is a disorder and still accept those people for who they are. You don't have to go all crazy and try to ban homosexuality. And you don't have to go crazy and try to destroy Rachel Dolezal. We can be respectful.

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

#136

Post by ImJamal »

commandlinefan wrote: post #100
virissimo wrote: post #90

Earlier quoted context omitted.

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.

That was my first though, BUT... to play devil's advocate, people choose gender reassignment surgery (including young children) and that choice continues to be very very controversial.

The controversy is due to cutting off perfectly good and functioning body parts. Correcting a body part that is not working correctly isn't all that controversial.

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

#137

Post by HaZeust »

highwayman47 wrote: post #87
alsetmusic wrote: post #71

Medical science is about the only thing in modern life that consistently delivers hope. While all the other terrible things are going on, something like this comes along and I’m just extremely happy to be alive right now.

It would be nice if people at these companies were rewarded the same way as food delivery app employees.

... Food delivery app employees get shitty rewards in proportion to their work as well?

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

#138

Post by eternauta3k »

dekhn wrote: post #119
thehappypm wrote: post #9

I’m optimistic that at some point, I’ll be able to get a treatment to take care of my red green color blindness. I’m well aware that it’s very much a first world problem, and rightfully should be very low on the totem pole of medical issues to cure. But goddamnit, I want to see red.

I am really curious what the subjective experience of a color-blind person undergoing gene therapy gradually being able to perceive the difference between two colors that previously appeared the same. See also https://en.wikipedia.org/wiki/What_Is_It_Like_to_Be_a_Bat%3F and https://en.wikipedia.org/wiki/Knowledge_argument

I guess the person would have no associations with the pure color red. Non-colorblind people have a life full of memories where red is associated with blood, lipstick, flushed cheeks, race cars, etc. plus the associated feelings.

I'm guessing they only really get the full effect of the therapy after they've lived without colorblindness for a while and made those associations.

Do you think there's a fundamental difference between getting a new color receptor and training yourself to recognize/differentiate more of the colors you already have the receptors to distinguish?

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

#139

Post by [deleted] »

derefr wrote: post #97
ggreer wrote: post #59

Earlier quoted context omitted.

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…

> 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). I mean, what's stopping you? This guy cured his own lactose intolerance: https://www.youtube.com/watch?v=J3FcbFqSoQY But I'm guessing — in part because you say "paid for the therapy" — that you don't really mean "should be allowed…

[deleted]

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

#140

Post by verisimi »

I'm glad this little girl can hear. But I don't understand how this can possibly work.

We can read:

> “So basically, we find the inner ear and we open the inner ear and infuse the treatment, in this particular case using a catheter, over 16 minutes,” he said.

Genes are in cells, right? It seems like what is being said is that this therapy goes in and alters all the cells. The altered cells then keep the alteration. Whatever it is that creates these cells, also knows to create this new type of cell - cos this is not an ongoing treatment.

Anyway explaining whatever technical thing is going on here with the word 'infuse' is a bit simplistic. Can we not have some more detailed information?

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