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Deaf girl is cured in world first gene therapy trial

independent.co.uk

301–310 of 351 posts

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

#301

Earlier quoted context omitted.

Thanks for your answer. Yes, I get that bit you describe, more or less. But also cells die - all cells are new in the human body after 7 years, right? (Or are we saying ear cells don't?) New cells are produced. Whatever creates new ear cells, needs to know to produce them with the update. I know that marrow creates blood cells.... and I'm not sure how replacement ear cells are created, but if it were something like m…

These particular hair cells dont die, so they think the treatment will persist, see https://news.ycombinator.com/item?id=40313256

thanks for the link

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

#302
post #272

Earlier quoted context omitted.

Brief? Many are still strongly against it, especially doing this very invasive surgery on babies.

It's a fair enough point, it being invasive, but at what point do the benefits outweigh the negatives?

Don't people who loose their hearing generally choose operations to regain it if they can? Who would know better than people who have tried both.

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

#303

Earlier quoted context omitted.

Funny because I feel the opposite. Health care is so broken with all the politics, insurance, bureaucracy, financialization, etc that the vast majority of people are not able to reap the rewards of progress. Even the science is perverted because of bad incentives and only potentially lucrative research is funded.

I was about to say we pay for all this super modern progress by making healthcare so expensive it's out of reach of the vast majority of people in the world (and in the US).

https://www.census.gov/library/publications/2023/demo/p60-28...

Over 92% of Americans have health insurance. The vast majority DO have access to healthcare.

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

#305

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.

I think this is why the skyrocketing costs of healthcare in the US are so upsetting to me. Its sucking away the hope by putting so many of these technological miracles out of reach.

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

#306

Earlier quoted context omitted.

I was about to say we pay for all this super modern progress by making healthcare so expensive it's out of reach of the vast majority of people in the world (and in the US).

https://www.census.gov/library/publications/2023/demo/p60-28... Over 92% of Americans have health insurance. The vast majority DO have access to healthcare.

I wouldn't say having some type of insurance == access to healthcare.

The increase in deductibles and decrease in % coverage throughout the course of my career has been shocking.

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

#307

My Mom was born with less than half of her hearing in left ear and barely anything at all in right ear. She had surgery as an adult and it slightly improved, especially on the right side. Pretty sure this little girl and my Mom don't share the same disability at all but she saw these news today and texted me so excited because future kids won't have to endure the same. Brings tears to my eyes, I'm so grateful for mod…

>> so excited because future kids won't have to endure the same. When cochlear implants became routine there was a brief protest by the deaf and hard-of-hearing community. The line between people with a disability and a person who is simply different is a longstanding debate. How and when medicine should intervene is a hot button issue. I had a relative born with a malformed ear canal. The doctors rushed to get her t…

> there was a brief protest by the deaf and hard-of-hearing community

As someone hard-of-hearing myself, let me clear up a couple mistakes in this:

1. The Deaf and the hard-of-hearing are not one community. Most HoH people who have sufficient augmented hearing (from CIs, hearing aids, etc) are uninvolved with the Deaf community. (Also, the community is capitalized, like "Deaf".) 2. The protests are still sorta ongoing in the Deaf community. Since most deaf children are born to non-Deaf parents, the parents typically choose treatments to give their infants some hearing (CIs, surgeries, and now genetic treatments), and many of those kids never enter the Deaf community as they grow. Thus, as a culture, the Deaf will slowly age up and die out for lack of replenishment.

I personally think the different/disabled argument mixes two concerns. To the extent that being "different" affords you the same level of dignity as anyone else, and "disabled" doesn't, I'm in agreement. Historically, we have frequently treated deaf/mute/disabled people very poorly until the modern era.

But to the extent that it denies the reality that most people have reasonable hearing, most of the world relies on it, and there exist interventions that can enable hearing, or asserts those interventions are immoral, I'm against it.

And I suspect a lot of this is driven by anxiety of the loss of Deaf culture. Are the limbless criticizing prosthetics? No, because there's not really a separate culture for that.

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

#308
post #299

Earlier quoted context omitted.

Funny because I feel the opposite. Health care is so broken with all the politics, insurance, bureaucracy, financialization, etc that the vast majority of people are not able to reap the rewards of progress. Even the science is perverted because of bad incentives and only potentially lucrative research is funded.

It couldn't exist otherwise. The privileged will always be the ones to push the boundaries of any endeavor, medicine included. Have hope that those rewards continue to work their way down, even though the process is long and arduous.

> It couldn't exist otherwise

That's just a failure of imagination, no? Endless sci-fi stories tell us a better world is possible, including wild genetic treatments curing deafness. Why should that apply to tech, but not society?

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

#309

Earlier quoted context omitted.

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

I can assure you that regeneron pays very well, including significant equity and has absolutely fantastic benefits. Software developers probably get more at door dash (it isn't bad by any means, but they aren't "the talent" at regeneron after all), but folks involved in the science and trials are doing very well.

I thought Zaphod came in six-packs, baby, so how can you be zaphod12?

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

#310

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.

Instead of modifying existing eyes, they should grow additional one/two.

Not sure why you're being downvoted for advocating for spidermen.
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