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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

#221

Post by jasonfarnon »

dekhn wrote: post #213
DarkNova6 wrote: post #212

Earlier quoted context omitted.

> I do not expect to see large-scale germline modification for non-disease purposes in my lifetime (another 20-30 years). Could you please share what makes you think so?

Two lines of argument: social opposition (people are scared by the technology and many religions strongly oppose human GMO) and lack of adequate technology (we couldn't actually make a permanent change that does what we want without side effects). Note, germline modification means making changes to future children, and all their cells would permanently be modified, and they would pass the changes on to their children…

So you're only pessimistic about the deployment of germline modifications rather than therapies like this?

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

#222

Post by dekhn »

jasonfarnon wrote: post #221
dekhn wrote: post #213

Earlier quoted context omitted.

Two lines of argument: social opposition (people are scared by the technology and many religions strongly oppose human GMO) and lack of adequate technology (we couldn't actually make a permanent change that does what we want without side effects). Note, germline modification means making changes to future children, and all their cells would permanently be modified, and they would pass the changes on to their children…

So you're only pessimistic about the deployment of germline modifications rather than therapies like this?

You missed the part where I'm describing germline modifications for non medical uses. Like, intelligence augmentation for your children. Very controversial.

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

#223

Post by jasonfarnon »

dekhn wrote: post #133
dotnet00 wrote: post #116

Earlier quoted context omitted.

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…

"My only conclusion at the end was that it would only be considered societally acceptable for diseases, not recreation"

I strongly doubt this. If technology is there, the path from disease to recreation would be very short once the market is involved. Except at the extremes, whether a condition is a "disease" or "impairment" can be pretty subjective.

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

#224

Post by [deleted] »

arjie wrote: post #141

My wife and I are selecting which embryos to implant because we have a related condition (this one is a mutation in OTOF, we have one in GJB-2). Being able to implant the embryos affected with this condition (carrying two copies of the gene - mine and my wife) would increase the number of viable embryos we have by 50%. It won't be in time for us to actually implement unless we're down to our last few embryos through…

[deleted]

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

#225

Post by jasonfarnon »

xyst wrote: post #187

As a person that’s not deaf. It’s great to hear scientific breakthroughs can help people experience life with this important sense. Although I think there’s a train of thought that think being deaf is not a genetic deficiency. Would deaf parents raising a child that is not deaf struggle? Would assimilation into the family unit be difficult? Personally, I think the level of isolation as a child from their parents woul…

What isolation? The children just become fluent signing with their parents, just as any child will spontaneously pick up their parents' language.

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

#226

Post by jasonfarnon »

legohead wrote: post #104
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.

I imagine if people selected for what society wants at a given time you'd have disasterous population level effects. Aren't animals bred to taste pretty messed up in a million other ways?

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

#227

Post by kennedywm »

sh4rks wrote: post #217
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.

What's the end goal of modern medicine though? Immortality? You can perhaps reduce suffering to nil, but you can't cheat death.

Even if you solve for immortality, that wouldn’t mean you will have solved all of the medical ills of humanity.

We might be able to “cheat death” within our lifetimes.

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

#229

Post by xXx_uwu_xXx »

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.

Where are young children getting surgery?

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

#230

Post by selcuka »

harimau777 wrote: post #207
jajko wrote: post #166

Earlier quoted context omitted.

Astronomy is cool too, nothing anchors you back in reality like realizing how absolutely microscopic and insignificant our entire mankind's existence was and is. Solid perspective and understanding of bigger picture is important, then nothing can surprise you much.

Personally, I find astronomy quite depressing. Learning that humanity is stuck on this rock; at least for my lifetime if not forever. As a kid I dreamed of exploring space. As an adult I learned that is impossible.

The term "observable universe" is depressing enough for me.
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