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Deaf girl is cured in world first gene therapy trial

independent.co.uk

61–70 of 351 posts

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

#61
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…

The Theory of Bounded Rationality tells us super humans are over rated. There will always be problems you throw in the lap of a super human, that they wont be able to solve cause of lack of time, or cash, or personality or missing info, or conflicting needs, or their belief system etc etc.

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

#62

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.

And I want to see UV like our proto progenitors, enough of these little brown birds we can't tell apart.

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

#63

Earlier quoted context omitted.

Her condition is a genetic disorder, which is a kind of disease. The deaf 'community' consists of many kinds of deafness, some are not diseases, others are. Some of those diseases cannot be cured, others are trivial to cure. In the same way there are many different kinds of cough, some due to diseases, others not, some curable, others not, yet no one pretends it's offensive to talk about curing a cough. This weird ex…

im being a little extra in replying here, but only because i used to think like many people in this thread until i met more people living with deaf and blindness, and i realized that i had a big (pun unintended) blind spot in my cultural understanding about disability. being deaf means that you live in a wholly separate world compared to a hearing person, and it changes the way you understand things- its a whole sepa…

I was expecting this sort of comment, but everyone lives in their own world with their own culture and perspective, especially given the large immigrant populations in the West. Yet, the vast majority of people get by not being offended over phrasings that they could take as offensive to their cultural sensibilities if they really wanted to.

I remember being taught a similar thing as a child, about referring to people with disabilities as 'differently abled' instead of 'disabled', and similarly in my home country the government has made an effort to change the word for disability from one which means "improperly able" to "blessed" (poorly translating). But the former has not stuck, and the latter has not changed how poorly disabled people are treated there. Ultimately the changes turned out to be little more than feel-good virtue signaling.

In the same way, what does not using the word 'cure' accomplish in practice? Some word needs to be used in its place, which will take on the same meaning and in a few years people will be getting offended over that too (as any way of putting it will convey the reality that deafness is considered abnormal to the typical human experience). See the progression of terms that are seen as insults to one's mental faculties as a prominent example, even just within the last 20 years of online discourse that I've been around for, we've cycled through variations of retard (tard, reet etc) and are now in the process of doing the same thing with autistic (with the emergence of euphemisms like 'artistic') since the former is now deemed a slur.

Or, using a less provocative example, we don't change our language to be accommodating of religious communities who consider certain things to be insulting to their strongly held values or beliefs. We rightly point out that facts are more important than their feelings, regardless of how many hundreds or thousands of years old their culture and beliefs are.

Edit: If coughs are insensitive, we can instead look at tumors. There are many types in all parts of the body, some are so benign that they can be ignored, others are curable, others are cancerous and still curable, and yet others are so cancerous they are quickly terminal. Additionally, people afflicted with them tend to form a community due to shared experience. But would we stop talking about tumors colloquially as something which needs to be 'cured' because a portion of those in the community don't want to (or can't) get theirs cured?

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

#64

Earlier quoted context omitted.

> like someone mentioned in a separate comment, you are conflating disease with disability here. when people become too old to walk without assistance, you wouldn't say that they have a walking disease. This girl's disease was a genetic auditory neuropathy. They cured her genetic auditory neuropathy. Pedantic arguments about what it's called are missing the point. The person had a specific disease. It was cured.

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?

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

#65
post #59

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 'though it'd probably take a while for the brain to understand the new information' is an interesting question; on one hand people say you need to fix stuff early in development while the brain is still very plastic (so great for this kid); but then again there is that demo of people getting used to vertically flipped vision with weird glasses; so perhaps something is flexible?

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

#66
post #39

Earlier quoted context omitted.

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

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, agreed.

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

#67
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…

The 'though it'd probably take a while for the brain to understand the new information' is an interesting question; on one hand people say you need to fix stuff early in development while the brain is still very plastic (so great for this kid); but then again there is that demo of people getting used to vertically flipped vision with weird glasses; so perhaps something is flexible?

yeah I'd be pretty surprised if your brain didn't figure it out in a week.

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

#68
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…

Breast augmentation could be one case.

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

#70

What always interests me with stories of people hearing or seeing for the first time in their life, what is it like to gain a new sense? One would think that growing up with a sense is integral to its processing (and filtering) and the sudden introduction of a sense later in life would come with all sorts of side effects.

I had a chronic stuffed nose into like the 2nd grade. So when I started taking steroids for my nose, I was able to really smell for the first time, and started noticing cooking smells. Overall, kind of meh, missing out on smell is mostly not a big deal. Smell is useful to detect odorants added to dangerous gasses and to know when the cooking is done if your smoke detector is too far from the kitchen, and it can help detect spoiled food (but visual inspection usually works too), but like I don't feel like my life was worse before I could smell, and there definitely wasn't a big step change improvement.
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