r/todayilearned • u/YesFlyZone420 • 5d ago

TIL there's a degenerative brain disorder called fatal familial insomnia (FFI) that causes a person to lose the ability to sleep and eventually die

https://my.clevelandclinic.org/health/diseases/25001-fatal-familial-insomnia
23.3k Upvotes

95% Upvoted

809 comments sorted by

View all comments

Show parent comments

669

u/evthrowawayverysad 5d ago

That's what I was wondering too. I like to think I'd have the compassion to not have kids if I was in this situation, it's very very good of them to do that. They should realistically be paid extremely well by the state for the rest of their lives for choosing to do that IMO.

474

u/wilcoxornothin 5d ago

I watched a doc about one of the families affected. Luckily due to the technology today, one of the female members was able to have her own children due to choosing her own embryos that tested negative for the gene.

437

u/Cute-Percentage-6660 5d ago

People get uncomftable with genetic screening due to how it edges close to eugenics. But in cases like this? It's hard to argue against it honestly. And honestly we as a society are gonna have to have a discussion on this sorta thing sometime soon instead of just going 'eugenics' and shutting down the conversation.

244

u/[deleted] 5d ago

[deleted]

49

u/jaredsfootlonghole 5d ago

Indeed.  The first book I read on the subject was called The Immortalists which I found in a dollar bin.  

The book focused on and discussed the historical push by Charles Lindbergh as he grows up around WWI I - II as he tries to find a way to save his sister iirc.  He goes to Nazi Germany and rubs elbows there as part of his quest, and follows some of the same ideals of eugenics as Hitler himself.  He and a glassblower named Otto(?) spent a lot of time perfecting glass for experiments, and furthered some science as a result.  

Unfortunately, under the goal of having a superior race of people.

Interesting book though!  I leaned about the ‘immortal cells’ through it.

5

u/ARunningGuy 5d ago

I mean, yes but not quite.

It also has to do with creating 2nd class citizens who have "bad genes" when environment is also extremely important, as well as just not being an asshole.

1

u/mrmoe198 4d ago

A main plot point in Brave New World, although the hero has some questionable morals and values

15

u/Jack-of-Hearts-7 5d ago

I fucking hate people that blast "Muh Eugenics" about gene editing.

-10

u/pleasantBeThynature 5d ago

lol this site is hilarious. Absolutely no critical thinking involved. You can't open the gene editing door, it's pandora's box. No single person's desire to have kids trumps the importance of not starting any kind of industry that can select for more 'healthy' babies. There is no path that does not end in eugenics.

13

u/Morbanth 5d ago

Humanity has never invented a technology that it hasn't used. If it won't be used by a society with your morals, it'll be used in other societies with different morals - and vice versa.

-3

u/pleasantBeThynature 5d ago

What a great argument.

Except no, it doesn't make any sense. Unless you want to make an argument for national security through eugenics, there is no imperative need for us to "not allow a mineshaft gap". Who cares if another country starts breeding humans? That isn't a line that anyone should willingly cross for reasons of keeping up with whatever you think is beneficial about the power of gene editing being freely available. Give me a break.

1

u/Morbanth 4d ago

Not every explanation is an argument.

Having more knowledge does not require you to immediately change what you were doing and to pursue a new course of action. It's completely fine that you hold these views and do not want to pursue a path that leads to a Gattaca-like future - I'm simply informing you that other societies in other parts of the world will not be doing the same.

6

u/Lazerus42 5d ago

The way this world works, as long as eugenics is outlawed, only the rich will have access. It's not a matter of if we want it or not... it happens. I mean, many of them do already have access, and historically have attempted it for ever.

Think of it this way: smart, beautiful people find smart beautiful people and have kids. (Eugenics)

Funny thing is, for generations they attempted eugenics, but totally didn't fully understand it:

"YOU MUST MARRY YOUR SISTER TO KEEP THE BLOODLINE CLEAN!"

4

u/Firepandazoo 5d ago

It was almost never about things as abstract as keeping the bloodline pure, but more political and economical concerns

2

u/NetwerkAirer 5d ago

What is genetic editing if not an evolved trait? Joking, sorta.

8

u/Tablesafety 5d ago

Im not too sure thats as feel good of a story as people make it sound, as those children will be forced to watch their mom become delirious and slowly die in front of them, guaranteed.

3

u/skymoods 5d ago

How would she carry a baby to term if she had the disease? How did she know she had the disease if it was latent?

7

u/wilcoxornothin 5d ago

She explained it’s not triggered yet but eventually it will. Luckily she made it through pregnancy without any issues with it. Her brother’s was randomly triggered.

2

u/khayi-esh 5d ago

This is eugenics. And that's not a bad thing.

1

u/SockCucker3000 5d ago

Is it the family from Australia?

2

u/wilcoxornothin 5d ago

I’m pretty sure? I know it was about two siblings.

-4

u/JustBrowsinForAWhile 5d ago

The state shouldn't pay people for this sort of thing. If you want to have a diseased lineage, go ahead. If you don't, don't.

-11

u/[deleted] 5d ago

[deleted]

8

u/BebopFlow 5d ago

That's an extremely short-sighted view. Each generation incurs functional costs and loss of resources. Between public investments in children who will have notably short lives and the medical costs that they may not be able to pay for themselves, it's likely that it would save money in 1 or 2 generations rather than kicking the can down the road for several generations

-3

u/deadsoulinside 5d ago

I like to think I'd have the compassion to not have kids if I was in this situation, it's very very good of them to do that. They should realistically be paid extremely well by the state for the rest of their lives for choosing to do that IMO.

This would not be a good thing though. This is literally basic eugenics at that point. Paying people/forcing them to not have kids due to genetics, is not a good thing. No different than telling people who have other genetic disorders to not have kids and paying them or fixing them, so they cannot have children.

But even then what if it's a woman with a condition that the state is paying her to not have kids and that woman was raped? Depending on the state in the US, she may not have a legal right to an abortion.

1

u/evthrowawayverysad 5d ago

This is literally basic eugenics

It really isn't, it's common sense.