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Vibe coding my way to a healthy family: Introducing Gamow Labs

ddmckinnon.com

61–70 of 138 posts

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#62

Earlier quoted context omitted.

Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort D…

In my country people with Down syndrome often live in housing together in suburban areas, with a social worker keeping an eye on things (independent living) or a carer available 24/7. They do sports, catch the bus, go to neighbourhood bbqs etc. Your depiction of a person with downs is not representative of the majority.

I think yours is not representative of the majority. Most places in the world can't afford dedicated carers, dedicated villages and housing, dedicated services, etc. [66-70% of Down's syndrome sufferers cannot live independently.](https://www.dscba.org/files/content/DS_functional_milestones...) Further, [11% cannot feed themselves, 26% cannot dress themselves, 29% cannot use the toilet themselves, and 52-54% cannot shower or bathe themselves.](https://www.mdpi.com/2076-3425/11/8/1012)

It gets worse. People with Down’s syndrome face all kinds of health issues. *Half* are born with heart defects. They have higher risk of hearing loss, vision problems, sleep apnoea, thyroid disease, coeliac disease, digestive problems, epilepsy, infections and leukaemia. They also have elevated risk of dementia later in life.

This is a hellish existence which no one would wish on their worst enemy. It's hell for the sufferers and it's hell for the family.

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#63
The post is written almost as if there is no prior art on (germline) variant interpretation. In fact, it is an established niche field with multiple commercial vendors existing for years (and diagnostics for critically ill infants is the most well known use case - google Stephen Kingsmore or Rady's children hospital for one). I'd be surprised if the approach is really something novel at this point.

It is definitely the case that the parents of babies and kids with life-threatening conditions are often one the most motivated people you see on Earth and what they accomplish sometimes is truly incredible. My heart goes out to them including the OP - I can only imagine how hard it must be....

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#64
post #36
post #16

It reads like a specific genome would lead to deterministic outcomes. It does not. Life is messy. Most Down Syndrome people have happy lives, some can even live alone and have an independent daily live. Life expectancy is up to 60 years. Yet in Iceland „Democratization“ of genetic diagnosis lead to basically 0% Down Syndrome kids (births). Where does this stop? What with someone of a genetic indication of aggressive…

People born with Down syndrome deserve all the respect and dignity any other person does. I have two kids. If I could have chosen whether or not they would be born with Down syndrome I would choose would “without” every single time. If either of them were born with it I would love them the same but I would never choose it, if I had the choice to make.

The point the OP is making is that given the choice parents will always choose a 100% 'perfect' child who will live a happy and long life free from things that make it difficult. Until relatively recently this hasn't actually been a choice though - as much as you'd like that, you've not been about to tell much about the long term future of a foetus so you got what Mother Nature blessed you with.

Increasingly though, parents can check, and they are doing, and that means they're getting to pick whether or not to carry a not-quite-perfect baby to term. Many are choosing to terminate and try again. Right now it's for obvious things like Downs, but the scope for what parents choose to terminate can, and probably will, escalate to other detectable problems.

The question is where that ends. Terminating due to a susceptibility to aggressive cancer? Maybe. Due to lower intelligence? Perhaps. Lower physical strength? Probability of autism? Unsymmetrical facial features (e.g. 'ugliness')?

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#66
post #35

Earlier quoted context omitted.

Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort D…

Does this make sense to you and her? Does she wish the kid would not have been born?

I'm sure she wishes her child had not been born with a debilitating disorder which usually requires a lifetime of care and comes with major health issues and suffering.

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#67

> Saying goodbye would have been easier had we known with certainty there was no hope. I found this to be the most interesting theory in the post because I'm not convinced it's at all true.

My mom always said never to judge a person until you’ve walked a mile in their shoes. I could walk a whole marathon and still wouldn’t feel like I had perspective enough to judge people in this case. The story made me gasp at that point like I’d been struck.

(And then there was the whole “antinatalist” bit and I am trying really hard to keep this dude’s shoes tied so I will stop there)

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#68
post #52

Earlier quoted context omitted.

The toll it takes on parents and siblings, based on stories one reads, must be horrible. You destroy the life of the family and greatly make the lives of healthy children harder. Why would you sacrifice your healthy children for one who has no real future? Complete inversion of common sense.

"has no real future"? I.e. not a net-productive member of society? Fun fact, machines are taking everything over, so you and any "healthy children" may be in that same camp very soon. IMO, anyone capable of living happily while being outcompeted by machines is well-adapted for the future. I'm not; average Down's Syndrome folks seem to be.

> anyone capable of living happily while being outcompeted by machines is well-adapted for the future.

> I'm not

Why not?

Re: Vibe coding my way to a healthy family: Introducing Gamow Labs

#69
post #16

It reads like a specific genome would lead to deterministic outcomes. It does not. Life is messy. Most Down Syndrome people have happy lives, some can even live alone and have an independent daily live. Life expectancy is up to 60 years. Yet in Iceland „Democratization“ of genetic diagnosis lead to basically 0% Down Syndrome kids (births). Where does this stop? What with someone of a genetic indication of aggressive…

The future is with gene editing to fix invalid genetic code. However, the owners of good genes probably won't give them away for free so it would be available only to the riches.
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