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Gene therapy restores hearing to children with inherited deafness

cosmosmagazine.com

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Re: Gene therapy restores hearing to children with inherited deafness

#61

Post by LoganDark »

akoboldfrying wrote: post #39
dyauspitr wrote: post #12

Earlier quoted context omitted.

I can’t wait for a geneCAD where we for example, design wings for a human body and then it works out the rest and generates a CRISPR based AAV that you can inject yourself with. True race and sex changes too. Hopefully in the next 50 years but that’s wishful thinking.

Let's try to fix the world's vast number of actual, boring health problems before trying to add the equivalent of spoilers and chrome-plated hubcaps to perfectly healthy human bodies.

I wish it were possible to achieve an entirely non-human body, but I don't think that's going to happen within any of our lifetimes.

Re: Gene therapy restores hearing to children with inherited deafness

#62

Post by JumpCrisscross »

akoboldfrying wrote: post #47
dyauspitr wrote: post #42

Earlier quoted context omitted.

You can do both things at the same time.

That's true if we assume unlimited resources and equal awareness/perceived social value of the two applications. But I think the former doesn't hold, and the latter is greatly influenced by sites like HN, where I'm disappointed to consistently (if not exclusively) see breathless proposals for ways to design shinier hubcaps whenever some promising new technology appears. Yes, they can and likely will both happen to so…

> breathless proposals for ways to design shinier hubcaps whenever some promising new technology appears

I wouldn't underestimate the emotional toil of dealing with illness and death [1].

Tackling these problems head on requires (a) exposing researchers to that toil and (b) removing from the pool anyone who doesn't want to do that. Given how much of Silicon Valley culture is built on borderline-ludicrous optimism (once it's over the border it no longer qualifies as building), it makes sense that the indirect approach finds resonance here in a way the direct one does not.

Where your argument finds ample purchase is in the asymmetry of idiot luxury spending in our society to basic and applied research of any kinds, wings or Wilm's tumour.

[1] https://www.statnews.com/2016/09/19/mental-health-doctor-res...

Re: Gene therapy restores hearing to children with inherited deafness

#64

Post by Teever »

akoboldfrying wrote: post #39
dyauspitr wrote: post #12

Earlier quoted context omitted.

I can’t wait for a geneCAD where we for example, design wings for a human body and then it works out the rest and generates a CRISPR based AAV that you can inject yourself with. True race and sex changes too. Hopefully in the next 50 years but that’s wishful thinking.

Let's try to fix the world's vast number of actual, boring health problems before trying to add the equivalent of spoilers and chrome-plated hubcaps to perfectly healthy human bodies.

What do you get from admonishing someone for saying the kinds of things that they just said?

Re: Gene therapy restores hearing to children with inherited deafness

#65

Post by smegger001 »

akoboldfrying wrote: post #47
dyauspitr wrote: post #42

Earlier quoted context omitted.

You can do both things at the same time.

That's true if we assume unlimited resources and equal awareness/perceived social value of the two applications. But I think the former doesn't hold, and the latter is greatly influenced by sites like HN, where I'm disappointed to consistently (if not exclusively) see breathless proposals for ways to design shinier hubcaps whenever some promising new technology appears. Yes, they can and likely will both happen to so…

In all likelihood if we were to get to the point of it being safe and cheap enough for genetic engineering cosmetic "upgrades" then that would through economies of scale drive enough money that medical research funding would be a solved problem. Also anyone wanting the chrome pipes and spoilers package is going to want their engine tuned. Whats the point of having functional wings if you heart blows out trying to use them.

Re: Gene therapy restores hearing to children with inherited deafness

#66

Post by brenns10 »

akoboldfrying wrote: post #46
sircastor wrote: post #21

I’m curious about the effect on the deaf community. I understand there’s resistance to “fixing” deafness as some consider it a component of their culture and community, not unlike queer people and the attempts to “fix” them. https://en.wikipedia.org/wiki/Cochlear_implant#Criticism_and...

>It is important to consider the sociocultural context, particularly in regards to the deaf community, which has its own unique language and culture Frankly, I disagree. I think a deaf person should be entitled to decline a low-risk treatment that would cure or mitigate their own deafness -- but to make that decision for a child is altogether different. Deliberately restricting a human being's sense experience throug…

This presupposes an awful lot. If it were truly a risk free magic wand you could wave, then I could see your point.

But none of the current options are risk free, and I doubt this one will be. They all have risks, side effects, and probably the chance of failure. And then the question is how low of a risk is acceptable to restore a child's hearing. These are people who would live an otherwise healthy and normal life, and they'd grow up in an accepting deaf family which is likely already plugged into a community. I can't imagine how it would feel to have a serious side effect (or worse) impact your child when you know they could have gone without that procedure and lived a happy, fulfilling life. But I also understand the desire to give your child every possible opportunity.

All of that is to say, I think it is reductive to compare this to child abuse or FGM. There's no right decision, and parents absolutely will need to make a difficult choice, hopefully prioritizing their child's safety and future above all else.

Re: Gene therapy restores hearing to children with inherited deafness

#67

Post by diego_sandoval »

nkrisc wrote: post #29
dyauspitr wrote: post #12

Earlier quoted context omitted.

I can’t wait for a geneCAD where we for example, design wings for a human body and then it works out the rest and generates a CRISPR based AAV that you can inject yourself with. True race and sex changes too. Hopefully in the next 50 years but that’s wishful thinking.

Taking it seriously for a moment, that still seems outlandish even in a sci-fi scenario. The amount of changes that would be necessary to the body for a human to achieve autonomous powered flight would be substantial. Given our overall density, we would need enormous wings and musculature. Consider that the heaviest flying birds alive today weigh maybe 40lbs and have a wingspan of 8ft or so. If we naively extrapolate…

All that energy will be better spent designing jetpacks powered by portable nuclear reactors.

Re: Gene therapy restores hearing to children with inherited deafness

#68

Post by houseplant »

akoboldfrying wrote: post #46
sircastor wrote: post #21

I’m curious about the effect on the deaf community. I understand there’s resistance to “fixing” deafness as some consider it a component of their culture and community, not unlike queer people and the attempts to “fix” them. https://en.wikipedia.org/wiki/Cochlear_implant#Criticism_and...

>It is important to consider the sociocultural context, particularly in regards to the deaf community, which has its own unique language and culture Frankly, I disagree. I think a deaf person should be entitled to decline a low-risk treatment that would cure or mitigate their own deafness -- but to make that decision for a child is altogether different. Deliberately restricting a human being's sense experience throug…

> Deliberately restricting a human being's sense experience throughout their lives should be considered child abuse

I've got relatives that teach deaf children. most deaf kids who grow up in societies with mostly hearing kids, want to be normal more than anything. At the same time, for many who are eligible for cochlear implants, getting that early before speech development begins in earnest is very important, ideally when they're just a toddler or younger. Early enough and you'll barely notice any difference in their speech, understanding, etc. However, their parents often decline it and say they want to let their child be the one to choose when they're old enough to- which is far, far outside the best window for developing that area of the brain, as well as speech. They might be behind in those ways for the rest of their lives if they're not given therapy to help catch up.

I understand both sides I guess, but if consent is the issue, why not give them the implant and let them choose to disconnect the receiver then when they're older? Obviously, because they won't want to, and rarely ever do.

Re: Gene therapy restores hearing to children with inherited deafness

#69

Post by houseplant »

dfadsadsf wrote: post #11
Something1234 wrote: post #3

Wait until they have kids. The deafness gene will be passed along. Soon enough we'll be like the cars with the hardware without the software or the locked features.

In vitro fertilization (IVF) combined with preimplantation genetic screening (PGS) is becoming increasingly mainstream. This advanced technique allows us to select embryos with healthy genes, thereby ensuring that babies are born healthy or at least reducing the risk of genetic diseases. Very expensive in US but is getting very affordable in Eastern Europe and Asia. Another alternative is selective abortions after ea…

that crazy pro-natalist fascist couple that's been all over the news lately do this. They pick and choose which of their embryos are the most fit overall, and/or which have blond hair I'm sure, and plan to have as many of them as possible. Seems a shame to go through all that, only to beat your kids in front of a newspaper reporter and give them neuroses that'll likely make them rebel against you, but I'm sure if they can invest in crypto stocks they must be very good at predicting the future right?

Re: Gene therapy restores hearing to children with inherited deafness

#70

Post by lannisterstark »

sircastor wrote: post #21

I’m curious about the effect on the deaf community. I understand there’s resistance to “fixing” deafness as some consider it a component of their culture and community, not unlike queer people and the attempts to “fix” them. https://en.wikipedia.org/wiki/Cochlear_implant#Criticism_and...

>not unlike queer people and the attempts to “fix” them.

To be fair, LGBTQ community isn't 'broken.' Some people are inherently gay, lesbian, etc.

Deafness _is_ an actual defect. The weird thing that we should not strive to fix human defects when they are truly defects is astounding.

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