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Comment on Sam Altman and husband reportedly working to genetically engineer babies from having hereditary disease

Because it’s an extremely nuanced topic.

Like sure, at face value eliminating let’s say HIV from being inherited or transmitted (and ultimately eradicate the disease) would be excellent, I don’t think anyone would ever argue against that, but that’s not so much the case with everything.

Say, eliminating dwarfism, or deafness, or blindness (mind you these are umbrella terms and not a single thing) might look good on paper, but there are entire languages, cultures, and communities out there that people created, which would be lost should the need for them cease to be.

Then who decides what should and shouldn’t be cured? What about neurodivergence? Homosexuality? Personally if someone says that they can “cure” homosexuality or gender dysphoria, I bristle. I don’t want anyone to “fix” my trans friends, because they’re not broken. Take it further, what about race? Should we fix that too? We could eliminate racism altogether.

There are a lot of minorities out there already being marginalised, and it’s not exactly exciting to see the idea of us being literally bred out of existence.

I think the core idea of wanting to “cure all disease” and whatnot is ultimately a good one, but as the saying goes, the road to hell is paved with good intention.

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chicken@lemmy.dbzer0.com ⁨1⁩ ⁨day⁩ ago

I don’t think anyone would ever argue against that

Aren’t they though? Take the example from the article:

KJ Muldoon of Clifton Heights, Pennsylvania, was diagnosed shortly after birth with severe CPS1 deficiency – the buildup of toxic ammonia in the blood.

The experimental therapy, crafted specifically for his condition, corrected a minor yet crucial error in his genetic code, offering hope for others with similarly rare diseases.

While liver transplants can be a solution for some, this innovative gene-editing treatment offers a new avenue of hope.

Presumably this was legal because it is something that was able to be done after the baby was born. What about similar, unambiguously deleterious conditions (there are lots of really awful ones) that fall afoul of the broad prohibitions on modifying embryos? At least on paper, this is specifically what the company that the article is about claims its focus is; the stuff no one disagrees that it’s bad to be born with. Like it isn’t very arguable that it’s good for babies to have ammonia in their blood and need liver transplants.

Gene editing to create a baby is illegal in the US, UK, and many countries around the world, with critics arguing it is unethical and unsafe.

So really at this point the question is only, do we allow the development and use of this technology for the things there is no objection about. I guess the risk is that this will be a slippery slope and lead to things being done that are actually bad, or maybe that mistakes will be made that cause unintended genetic issues. But if it was possible to use it just for that class of diseases, and the treatments were safe and worked, it would be a good thing.

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- Dojan@pawb.social ⁨1⁩ ⁨day⁩ ago
  
  Aren’t they though? Take the example from the article:
  
  I phrased it a bit different in another comment, and perhaps that nuance is warranted. In a vacuum most people wouldn’t be against it.
  
  It’s not in a vacuum though. In this case one of the people funding this is a man whose product is manipulating people into killing themselves. I don’t think I personally should have a say in whether or not this kind of tech is pushed, and I definitely don’t think some rogue billionaire elite class should have a say either.
  
  At least on paper, this is specifically what the company that the article is about claims its focus is; the stuff no one disagrees that it’s bad to be born with. Like it isn’t very arguable that it’s good for babies to have ammonia in their blood and need liver transplants.
  
  Yes, and then once that’s out that sets a precedent for fixing further. Why would they stop at these conditions? You could expand to touch up the genome, maybe prevent other conditions, like Down Syndrome.
  
  It’s dehumanising. We have real people alive today that are already marginalised by society and don’t get the support or visibility that they need.
  
  One time a doctor was speaking to my sister and I was awake. He told her that she should contemplate letting me go because of my quality of life. This was so upsetting to hear because I was right there. He didn’t respect me enough to speak to me or involve me. Felt like I was not a person but a thing.
  
  There are absolutely devastating disabilities out there that completely hollow out someone’s quality of life. There are also lots of people out there living with disabilities, where the struggle is less because of the disability, and more because of the society we have around us. Fixing society seems to me the more humane option.
  
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  - SaveTheTuaHawk@lemmy.ca ⁨19⁩ ⁨hours⁩ ago
    None of this will happen at $2M a person.
    
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    Dojan@pawb.social ⁨17⁩ ⁨hours⁩ ago
    Thank fuck for that.
    
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