Baby is healed with first personalized gene-editing treatment

As a father, the idea of being told my 1 week old baby is going to die would be my worst nightmare. The fact these doctors and scientists saved this childs life is a monument to modern medical science. This is absolutely insane. Hopefully the child doesnt need a liver transplant, but this is a great leap forward.

Delete your comment. You're minimising the death of children.

Yeah I'm sensitive about this. I like many other parents of children who have been lost to genetic disease have good reason to be.

In real life, anyone who is a parent knows you would welcome a better chance for your child without hesitation

We can pause and acknowledge that life (and what that means) will change, while also acknowledging that for many it will be the easiest decision in the world for it to change.

bro read the room

If you're being pedantic, babies usually never die - they transform into an adult which is the form that dies.

Typically yes? But surviving infancy is the first step on the road to immortality (but that will require more than CRISPR... probably?)

Immortality? (rolleyes)

Hopefully after living a long and fulfilling life? Geez

Edgy! No one has ever considered the mortality of their children ever, or contemplated the difference between death before and after the realization of potential. Wow!

Genuinely don't know why this is edgy. I was trying to understand his logic

Having a child predecease you is one of the worst things that can happen to a person in general. This is a common sentiment in humans. The strange thing is that you mentioned you're trying to follow "logic." This is not logic. These are emotions.

Not only a hurtful question, but a stupid one as well. Well done.

This question is logically sensible but considered emotionally abhorrent. If you haven't been tested for autism you should consider taking a quiz.

I understand this. My question arose from the fact that it seems like he only cares about the child dying before him, not the child's death overall. It was

> the idea of being told my 1 week old baby is going to die

not

> the idea of my child dying

Care to explain why it is stupid? And what's hurtful about it, too? Deciding on a child, you KNOW it's going to day at some point

What an insanely callous and shallow take. I don’t even know where to start. You’re trying to claim the moral high ground by complaining that a privileged child didn’t suffer and die? Do you even understand the point of reducing poverty?

If you dont see the fundamental difference between a one week old baby dying and a 70 year old dying, you are beteft of humanity. One is a baby, one that is completely new to the world and totally innocent. The other is a person that has lives life and experienced life.

An absolutely terrible and tone-deaf way to phrase that thought, but the fact of the matter is that most of the world (you and I included, in all likelihood) will not get access to this sort of thing in our lifetimes. Not because modern medicine won't have been there yet, but because our lives (and those of our children) are simply seen as being worth significantly less than a rich person's desire to become richer.

How many people can even afford to get multiple opinions for a weird lump on their back? Or go to the dentist for a strange toothache? How many people can afford to get consistent exercise and eat healthy? How many lives would be saved or at least massively bettered? We already have the means to extend the life expectancy of the average person, and it's not being used. Obviously this is a wonderful medical advance, but it's depressing to wonder who it's for.

"I am simply a machine. I do not experience death as humans do. It is just a cessation of function." - Data in Star Trek The Next Generation,

Please stop with the ad personam. Can you explain how this relates to my question (and you could answer it as well)? Also, is death of an older person worth less grievance?

A parent's obligation is to try and do everything they can to make their child's life good. I think most people would agree that living more than a week is a good thing.

Only 1% of the population has autism. Presenting autism as a considerable possibility for trollish behavior isn't much different than what the parent commenter did.

I don't really know what you're going on about? We're all going to die, we all know that that's going to happen, but none of us want to suffer and most of us would like to live relatively long lives.

I am not a parent but I think if I did have a kid I would try everything I could to keep my child alive and minimize pain in my child's life.

Yes. Yes it is.

So obviously we should not be excited about it? Lose me with that noise.

Do point out where that was said, and I will be happy to correct it! It's important to have nuanced opinions and discussions about things.

> An absolutely terrible and tone-deaf way to phrase that thought, but the fact of the matter is that most of the world (you and I included, in all likelihood) will not get access to this sort of thing in our lifetimes. Not because modern medicine won't have been there yet, but because our lives (and those of our children) are simply seen as being worth significantly less than a rich person's desire to become richer.

I'm as negative about the rich and powerful as anyone but this is such a cynical take - that might have been applied to many medical treatments in the past that have become relatively commonplace and easily accessible to people of all classes, at least in sane countries with sane healthcare systems.

> that the child will die at some point

So what? So a father shouldn't celebrate medical advances that mean their kid doesn't have to die after a week? And if it does, they should just be like "Ah, that's life!"

Certainly, you may choose to conduct yourself like this. I won't stop you! And other people who might've otherwise seen your point will be turned away from it. I prefer to have constructive conversations with people I view as equals, not stupid or infantile.

Observe that the replies to my post do engage with the argument I made.

Indeed, my view is heavily American-centric. And the trends of the past-- which you're right about-- may not apply to the future given increasing wealth inequality, the cost-of-living crisis, and the climate crisis (for which undoubtedly the poorest of us will be forced to shoulder most of the burden).

I'm explicitly not saying this work shouldn't be done, it should! But it does not exist in a vacuum, and it would be silly to pretend that it is not colored by vastly unequal access to modern healthcare. The reason I get excited about technology is because of the potential it holds for making us all happier and freer to do the things we like for longer. We are lost if we do not at least speak about the thunderclouds on the horizon for this philosophy of technology.

> We are lost if we do not at least speak about the thunderclouds on the horizon for this philosophy of technology.

I think, every once in a while, it's okay to just celebrate without looking for the the clouds :)

That's fair, I respect that view. :)

The medical profession allocates scarce resources based on the amount of quality-adjusted life years it will bring.

Humans see value in living life, so cutting a life short is worse than a life that would be ending soon anyway.

I never said any of this

I didn't say you did. I was trying to understand your point, and so was inferring what you could possibly have meant with your original comment.

Oh, sorry. I definitely think a father can (should?) celebrate medical advancements like this, and definitely shouldn't undermine death like "Ah, that's life". My point is that people often worry about their children's death when they themselves are still alive. Death seems okay if it's when they don't get to see it

"questions I don't want to think about are trollish"

now, confirmed.

Death of someone whose potential was largely realized is a very different thing than the death of someone who never got a chance at the same.

I would be deeply unhappy to learn that my children won't live to old age.

Also witnessing the death of a loved one is obviously traumatic. People grieve their parents dying of old age.

What was the question? The rampant flagging here is quite annoying.

My original comment said:

> But your child will die and that's a fact. Is it only ok for it to die after you?

I think it's a tool that can be used for great good. But also can be used for eugenics. That's why I pasted the link. It's a slippery slope. What a parent will do for their kids knows no bound.

It’s less of

> my baby is going to die, woe is me

and more of

> have I failed my baby so much as a parent that he won’t even grow to adulthood (much less have a wonderful, happy life)

It’s not exactly a rational feeling; it’s not like this baby was going to die through lack of parental effort or care or anything else that the parents have any real control over, so it’s not like they could have done anything differently.

Nonetheless, it can make you feel like an utter failure of a parent. To some people (I admit, not everybody), that is absolutely crushing.

What are you talking about? Since the 1800s people have been shipping vaccines to "most of the world"

Everyone could afford to "eat healthy" and get exercise if governments and social planners put in a modicum of effort. Unfortunately they aren't directly incentives to do so.

Framing either of these things as a wealth issue ignores both how wealthy even the poorest in the world are and the systems responsible for the problem. For everything else there's health insurance, yet another horribly mismanaged system.

Is there more context to this question? I couldn't read the article because of the pay wall. But in isolation, this is a dumb question. All decent parents want their child to live as long as possible and be as healthy as possible. Is there something deeper you were trying to get at?

You are trying to frame this as pure “logic” but if you had read a single book on ethics or even philosophy you would see that’s not the case. You are basically asking “but why is good better than bad?” Acting as if you are logical but failing basic premises of logic or ethics. Any ethical framework is going to have axioms, typicslly these axioms are things that are inarguable for any person, namely its better to live than die, or to reduce suffering, etc. using basically any ethics system and pure logic you will quickly reach a conclusion that a baby living is better than one dying.

This really has nothing to do with the inevitability of death. Death is inevitable, however there is a difference between a child dying and an elderly person dying. A child has potential, they have not lived their lives. A child has not actually lived the full basic human experience, they havent had a crush, or fallen in love or married or had children or had any great successes or failures or close friends or anything, these things everyone does. An older person has, they are not a pure soul who hasnt experienced life. After 70 years you can be sad for the individual passing but happy that they have experienced life. This is why when a parent has a child they arent sad that their child will die in 80 years, but are devasted if they die at a week. The child never even had a chance. When you actually have a child, its an emotional and fulfilling experience, and to have that torn out so early is damaging.

From an empathy and emotional pov these things are so extemely basic and foundational aspects of being a human, a 10 year old from any culture on earth can undersrand this with no difficulty. And any person with even a passing familiarty with logic, ethics or philosophy will dismiss you as being earnest. Which is why people are assuming you are a troll.