This made me smile.
And I agree with your entire post.
1 Like
Rare connective tissue disease that affects roughly 1 in 5000 and is life ruining for many
You start off normal and progressively decline from a seemingly mysterious illness starting in teens to twenties
Some decline sooner, very rarely you can be a mild case but it’s usually a life of pain… I think I’ve had almost 20 orthopaedic procedures now and I’m likely due for like 6 more over the next year or two.
My grandfather died from an anyerism at 49 from this, two of his close relatives died of anyerism at 30-35 from the same thing. I was the first to get a diagnosis, which led to a review of the family and this disease clearly runs rampant on one side
Have a kid? 50% chance you pass it on (and in reality looks more like 75%)
Familial hypercholesterolemia (heterozygous)
From my fathers side bipolar and a bit of schizophrenia
Autism also runs rampant on the one side
I think something like THIS qualifies as bad enough. A bit of heart disease when you can take meds, clean up your diet etc isn’t bad enough. This is extremely life limiting, progressive and incurable.
I went from being able to deadlift 500+ lb, combat sports to unable to walk 500 meters in a span of 4-5 years
Granted medicsl malpractice was also involved it doesn’t detract from my point
I want serious pathological traits like what I was born with bred out
My best friend has marfans shndrome (very similar to what I have, but the joint and orthopaedic manifestations are worse with what I have whereas he is more likely to encounter aortic dissection)
His quality of life is shocking as he is badly affected. That’s another condition that we would be better off without. Marfans usually even has an identifiable genetic marker (50-60% of the time)
Hence I like the idea of “agree to not have kids and we as a community take care of all your healthcare costs and provide you with the best treatment available Including pain management… have kids and you are on your own”
as I see many on these support groups who keep having more kids they don’t have the bandwidth to take care of be it emotionally, physically or financially… I have very strong, very harsh views on peoole like me who still have kids despite knowing
A: the pregnancy will wreck them
B: they aren’t capable of adequately raising a child let alone a sick child
No
The idea would be to edit out the gene that causes it. Bipolar is treatable to an extent with medicstion and therapy, although I must say my other grandfather had bipolar and it tortured him until he died in his 60s (was a chain smoker who kept smoking even when he was on oxygen for emphysema)
I take lithium and may be bipolar myself but I refuse to get evaluated for that as that dx is a certain bar for gun ownership in Aus amongst other things… when I go hypomanic or whatever you want to call it I have genuinely lost touch with reality once or twice… the few times it has happened it was one of the scariest things I have ever experienced. Bipolar itself might not be a dealbreaker but I must say my fathers father put a lot of stress on his family and I have been very difficult on a few occasions before I started lithium (which put a stop to the mood swings entirely and now I’m stable). It popped up only in my early 20s! Started at 22-23, started lithium at 23
What I’m talking about re genuine, serious genetic illness… I know someone with the same condition I have who sustained an internal decapitation from a fall.
It’s not fair to bring people into this world who will experience this. I had a normal life, and lost everything..
6 is supposed to be 1 but the formatting autocorrects when “saving edit” fyi
I think we are talking about a few things now:
-
Severity of condition
-
Uniformity of life expectancy (indirectly)
-
3rd party morality oversight
-
Controlling human nature (reproduction)
-
Govt mandated social engineering.
-
Regarding severity of condition, I can sympathize. I can think of two people I know who have/had muscular dystrophy. One was a colleague/friend. Very successful guy, owned a nice home, two vacation homes and was a licensed pilot with a plane. We went from occasionally flying to dinner in New Orleans, NY or wherever with our wives on a boring Wednesday, snow skiing, wake boarding et cetera to watching him degrade in to needing care. He has died, but left three so-far healthy kids and owned a company that supported roughly 80 families financially for many years. I don’t know if his kids will suffer the same fate or pass the gene instead. Or both. But nobody does.
The other one is a different friends kid. Very sad story. He was diagnosed early and has far outlived his lifespan due to medical care. He has a metal rod for a spine, a special wheelchair that costs more than some people’s houses and all sorts of things but his quality of life admittedly miserable. I would rather be dead myself (cue a suicide sideline - or a living will directing care), but my friend has two other kids. A daughter who is the stereotypical gorgeous blonde and married a doctor and a son who is early in a promising oilfield engineering career.
In hindsight should he have forgone fatherhood because the gene for muscular dystrophy exists?
You mention a ratio of 50% likelihood of passing yours. I understand your position suffering now, but is there any room for a glass half full perspective on the other 50%, especially overlaying the suggestion of govt severely punishing people for having kids?
-
Uniformity of life expectancy - we all start breaking down and dying, unless there’s a quick accident or something. Some will suffer through the breakdown longer than others but that’s also part of the pursuit of longevity. We will all take medication to live longer than we should per nature at some point, if we aren’t already. You mention 49 years of age for your example, and many of those have likely been in a degraded scenario. Does that mean none of it was worth it? There are no passions or hobbies to pursue? Zero life to live or gift during the capable years?
-
3rd party morality oversight - again who defines? Govt? Come for my daughter because her grandmother has a bipolar diagnoses and I’m about to be the next Ruby Ridge. I would introduce medically assisted suicide here. Keep it a personal choice.
-
Pretty sure we all enjoy fucking, which leads to pregnancy and sometimes accidentally. Now what? State mandated abortion? See 3
-
Govt mandated social engineering - just no.
The problem is that this can’t actually be accomplished.
Genetics and evolution are not neat, clean lines of code operating in a closed environment. There is no end goal that our DNA is striving for. It just wants to be as messy as possible to survive bottleneck events.
Playing wack-a-mole is a waste of time. Ask this guy.
1 Like
We already use thresholds all the time insurance, credit, military etc. all screen people out based on risk or minimum standards. People do nothing.
That’s what I was getting at
It can’t be done YET
There was a controversial case of a woman with vEDS (a sub type of connective tissue with avg life expectancy of aroind 45 and avg person affected has had at least one anyerism/bowel perforation/arterial dissection by 25) who underwent IVF and chose an embryo that did not have the genetic mutation leading to vEDS
She almost died from the pregnancy… but the concept remains. Then she used surrogacy.
The thing is had the pregnancy been successful chances are she wouldn’t have lived to see her son/daughter graduate!
vEDS is a very sad disease. Not only can you never really move around as you will spontaneously rupture an organ… surgery to fix these complications has a low success rate as the tissue cannot stay stitched shut and you often wind up dying on the operating table or before you get to hospital
It’s very understandable for this mother to want a child without that disease… but I also think “shouldn’t even a normal child hopefully have a childhood where he/she HAS a mother (or father). Two parent households GENERALLY eventuate better outcomes on an epidemiological relative to single parent households
Within ten years I believe genetic therapies will exist… including a treatment to stabilize what I have but by then it will be too little too late for those of us who have been born and have deteriorated
At this point I would prefer peoole who are as unlucky as I am stop reproducing… it’s not fair on the kids… unless they have money and are willing to adopt or use a surrogate and even then… what if you deteriorate while raising the child?
My friend with marfans syndrome… his mother deteriorated very rapidly as he got sick (she has less genetic penetrance than he does and only declined later on in life) and she didn’t and doesn’t have the bandwidth to take care of him
The issue there is, lots of these sick children remain dependent on their parents essentially forever… some can’t work or go to college… my friend had to drop out of school in year eleven as he was averaging 4-5 operations per year and the school was pushing him out (private schools don’t want students who don’t excel academically)
Honestly? For me the first 21-22 years were worth it
Now at 24 it’s getting very, very hard. I’m in a lot pain all the time… very tired (physically exhausted) 24/7. I loved life when I was capable though I’ll give you that. I LOVED exercise more than anything in the world 
That answer is complicated, and it’s different for everyone. At what point do you decide there is zero life left to live? That’s an extremely complicated… and controversial question… I believe it’s a personal choice. Person A might stick it out for their family when when bed ridden and suffering until the very end whereas person B might have had enough the second they lose normalcy in life (permenantly) as they just can’t see a path forward as a fully disabled individual.
I am an advocate for assisted euthanasia when permanent and intractable suffering is on the table, that choice is preferably made not by impulse/depressive thinking. Some people never get past the grieving. I never got past it despite trying therapy for a couple of years… nothing can make up for everything I’ve lost and continue to lose.
A lot of guys such as myself and my friend lose opportunity to partake in dating/sex after we decline. I had some fun before… then you become invisible to women (and understandably so when you can’t do anything normal guys can do)
It’s generally the women with these conditions who reproduce… the guys? Almost every young guy I’ve met who has what I have or similar has been single for a long time (but many, Including myself… dated before the deterioration)
The idea would be to help your daughter have a child who isn’t bipolar. Why would that be bad? Bipolar in itself isn’t bad enough (if treated) for me to say “forced sterilization”
I’m talking about carrying the gene for huntingtons disease or familial early onset ALS where it’s just unbelievably unfair to pass that on
In my family on that side 49 30 and 35 I think… those are the three who have died so far. The 49 was assisted with medicstion. He surprisingly didn’t deteriorate too badly before he died suddenly
I am by far the worst affected in the family.
I also know someone like this. Not muscular dystrophy… funnily enoufh the same condition I have but she had one of the worst scoliosis cases in all of Aus. She was on the news as multiple specialist soinal suregons worked tirelessly to fuse her from like c1-s1
Her spine was pressing on her lungs and vital organs. She is currently also housebound and wheelchair bound. I do believe she might have attempted suicide but currently she is alive
IVF to select embryos without the gene
Muscular dystrophy is an incredibly devastating illness. It’s absolutely unfair to those afflicted
No
I get very, very exhausted very quickly, and the amount of pain that comes with my condition absolutely makes me terrified of having a child. I don’t think I’d be able to financially or emotionally provide
And my heart would shatter into a million pieces if my child wound up like me. Just as my mother and father are beyond heartbroken to see me the way I am. I have seen the way it affects them. It’s almost like losing a child or so it seems…
I’m not sure what you’re referencing for “people do nothing” but a private lender or medical cost subsidizer doesn’t equal controlling reproduction or right to life.
I have another buddy who doesn’t do financially well at all and can’t get loans anywhere. I’ll occasionally lend him money and he eventually pays me back. Sometimes in chunks, sometimes as a very small (to me) trickle, sometimes we completely miss months. In any case, I totally understand lending tolerance thresholds here without erasing his ability to be a parent because he will probably have a health issue one day.
Exactly
1 Like
Not a practice I’ve ever participated in, but I would just buy the deed in this case, no question.
My overarching point, however, is that essentially castrating somebody because of family health history seems overreaching.
1 Like
I’ve thought about this myself
Let’s say by some miracle I meet a girl who wants to settle down with me… but I’ve slept with 20 prostitutes (hypothetical, I have purchased sex once though adter the deterioration started… moment of weakness on my behalf and it’s legal to do this here)
That’s a pretty serious skeleton in my closet. How do I tell my future fiancée/wife about this?
I think it’s highly unlikely that this scenario eventuates. I’m somewhat inclined to go down this path given it’s totally legal where I live. Pathetic…? Sure… but if there’s no alternative because women (justifiably mind you) don’t want to sleep with someone like me am I supposed to go without forever?
I don’t think so…
Not castrating. For women this would be a shot of depo provera or luperon implant
For men reversible vasectomy
Or if you can edit the genes of embryo IVF then no birth control shot or vastectomy.
Chemical castration then. Same end. Same problem for me.
I’ve worked in skilled nursing facilities (formerly called nursing homes) that house elderly long term and people for short term rehab after hospitalization for all sorts of reasons, including bad stuff that happens after drug and alcohol overdoses. Nearly all places I worked at were privately owned, except two non-profits. Insurance covers short term rehab, and at previous jobs in the (hometown) hoods of our beloved 50 Cent, Run DMC, and Onyx, many of the rehab residents were on welfare. At my most previous job, a methadone clinic was down the block.
A formerly alcoholic family member of mine spent 90 days in a rehab with insurance coverage.
1 Like
Amen. ”Best genes” are also debatable to a point, depending on the context.
Example: genes that increase aggressiveness and risk taking were useful with men who hunted mammoths and other big game. These same traits are mostly hindrance in modern societies.
Back to eugenics: I think it’s a similar thing as with slavery. You could make it work in a way it would benefit society. Not for those who are left out by eugenics, nor those who are forced to slavery. But society as a whole could benefit.
Both these applications are against basic ideas of humanity, democracy and civil society. So we would need to have less these present to make it really work.
Genes are difficult to control and manage with large populations, and it would need pretty harsh methods. Idea that we could root out ”bad genes” is not easy to pull out in practice.
As a sideline conversation, I disagree. These are the men today who create and hold the opportunities everybody else works for and are provided for underneath. Still “hunting the mammoths” in a modern way.
It just feels like an undesirable trait set to most, because most never have to use them and then settle in to their niche. And get mad at the mammoth hunters.
1 Like
True. I also tought that, there are certain professions and situations where these traits are needed.
But these same genes are also present in most crimes most likely? I remember some studies about high aggressiveness and poor impulse control within inmates.
Serious question: is it civil for normal, rule and law abiding people to take the burdens of and even be harmed by maladaptive people? I think not.
Not having a death penalty is uncivilized, for example.
A scam.
I referred to a society where civilians have rights.
As a side note: a difficult question, and not necessarily fixed with eugenics.
Maybe. But I much more prefer to live in a country labeled as liberal democracy than in North Korea or Eritrea.
1 Like
Probably the key ingredient. Poor impulse control ruins literal hunts too, for the record.
3 Likes