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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

#121

Post by achenatx »

tantalor wrote: post #43
delinom wrote: 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

Im red green colorblind. When wearing my enchroma, some things I thought were brown are actually very red.

On the other hand green lights lose their green.

On a day to day basis I can functionally see red and green, but sometimes when a red or a green is next to a brown I cant distinguish them.

And versions of red that regular people might have a hard time distinguishing would be impossible for me to distinguish.

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

#122

Post by janeerie »

julianlam wrote: post #44

I'm excited to see possible parallel applications of this therapy for other hearing-loss related gene mutations such as GJB2. From what I can tell from a press release from Regeneron themselves, they're also working on GJB2 and STRC therapies.

Can you point me towards more info on GJB2 therapies? This is the cause of my son's hearing loss.

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

#123

Post by iLoveOncall »

1970-01-01 wrote: post #86
gherkinnn wrote: post #25

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.

NYT has an excellent summary on it. Life becomes very hard when they try to use their new sense in any meaningful way: https://www.nytimes.com/2021/06/29/books/review/comnig-to-ou...

This is not at all a summary, it's a book review and it is based on 4 hand-picked examples.

I wouldn't read anything into it.

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

#124

Post by foxyv »

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…

> Where is the line between "gene therapy" to eliminate differences (such as deafness) and eugenics?

The difference is usually a matter of informed consent. Eugenics tends to be non-consensual. Sterilization or forced birth control for unwanted individuals. Murder of unwanted individuals. Involuntary genetic modification of unwanted individuals will probably pop up eventually.

Typically gene therapies are on living, consenting people with all the information to make a choice. It also doesn't usually result in germline modification. The sticky part is when you get to babies and fetuses. Can a mother consent for her fetus? What about germline modification? In-vitro gene therapy? Then you are getting into Brave New World territory.

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

#125

Post by delecti »

HumblyTossed wrote: post #91
delecti wrote: post #46

Earlier quoted context omitted.

Unfortunately most of those videos about the glasses are basically staged. Some of those companies have gotten in trouble for making false claims.

It truly is sad if that is the case that those videos are staged, but, anecdotally, I worked in the eye glass business (lab manager) to pay for college back in the day and I assure you, I have personally seen babies see their parents for the first time clearly and there was plenty of tears to go around.

Yeah, to be clear I was specifically referring to videos of people reacting to the glasses that supposedly let colorblind people see color. I think EnChroma is the big name in that space. I didn't specify "color correcting", because that was the only kind of glasses mentioned in the GP comment.

Normal glasses that correct refractive vision issues are obviously real, and great, I'm certainly a big fan of mine. And while I've never seen it in person, videos of babies seeing through refractive correction glasses are adorable every time.

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

#126

Post by Petersipoi »

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.

You want the people at these companies to get a 3 dollar tip each time they restore someone's hearing?

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

#128

Post by jimnotgym »

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.

Caveman brains, mediaeval institutions, and godlike technology. What could possibly go wrong.

That is a quote I heard somewhere and paraphrased.

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

#129

Post by itslennysfault »

thehappypm wrote: post #51
delinom wrote: 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.

I have, yes. I can describe it sort of like this: Imagine you're watching a black-and-white movie on an old TV, and it looks kind of washed out. You fiddle with the contrast, and suddenly the movie looks much crisper and with better contrast. You're not actually seeing more colors -- its just grayscale -- but you can optimize it to give you more depth of perception. That's what EnChroma does. It doesn't actually make…

So, does it just look like different green? Like still green, but you can tell it apart from "true" green? Like wearing them could you pass a colorblind test even though you still can't see red?

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

#130

Post by dekhn »

Gene therapy has been an extremely slow game. Part of that is ethics, and part of that is technology. A single death in a single trial slowed down gene therapy for decades https://en.wikipedia.org/wiki/Jesse_Gelsinger I dedicated much of my biology training to learning how to carry out gene therapy only to conclude that it will continue to be the underdog in disease therapy for a long time. I do not expect to see large-scale germline modification for non-disease purposes in my lifetime (another 20-30 years).
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