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My wife's family has a different disease running through it, though one with very similar outcomes. Huntington's.

It's genetic and dominant (so a parent having it means 50/50 for the children). Average age of onset is 38. Symptoms are a mixture of Alzheimer's and Parkinson's (both dementia and motor control issues).

Her uncle was diagnosed at 38, her mother at 50. I wasn't around for the first one, but have been there for most of the latter case (her mother is now 60).

Watching someone you love deteriorate before your eyes and become a different person week by week is one of the most harrowing experiences one can go through.

"You pick up the phone, you talk to your mom, you don’t have to say anything. It’s a mom". My wife had to go through discovering motherhood without that and she still can't adjust to the fact that her mother is not the same person anymore, it's a constant heartbreak.

I'm just glad there's a simple test for this and that both my wife and her one brother tested negative. So I'll never have to go through what Robin did but that possibly was something I had to contemplate for a while and just the thought of it (and those 2 months waiting for the test results) almost broke me

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Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to, they seem to immediately think of "eugenics" and every other bad word and imagine you running a concentration camp... and not just people voluntarily using birth control to avoid the suffering of their own offspring that's all that I frequently suggest.

Huntington's normally first appears in a family when the carrier is late in life, so it's really not that simple. Not uncommon to already have grandkids before you know. The average age of onset reduces as the generations go on.

And FWIW it has a spontaneous occurrence rate, so even if all known carriers have no offspring it wouldn't eradicate it.

> first appears when a carrier is late in life

Not disagreeing with you I don’t think, I’d call it disease appearance to happen at middle age at best. Plenty have visible symptoms in their 20s though usually it’s in their 30s and 40s. Death is usually sometime around 20 years after onset of symptoms, though earlier onset often means earlier death. This is apart from the suicide risk, which is markedly increased. It’s about as awful a disease as one can have.

I think the issue you are probably running into is a lot more nuanced then you are portraying it to be. Whether you are religious or scientific or some mix of both, creating offspring is a pretty fundamental instinct that is very deeply ingrained into humans. Logic might say "If you have a genetic abnormality you should stop procreating for the greater good of society/your potential offspring/yourself". But we aren't wired to think that way. We think of procreating. The percentage of people who want absolutely zero offspring at any point in their entire life is really tiny. People want children and will put themselves into great levels of harm to have them. You can't really fight that. Children make us happy.

The reason people tend to think of eugenics and concentration camps and such is because they don't know where your slippery slope leads to. If someone with huntington's disease should not have children for the greater good, what about people with a family history of cancer, or a family history of heart disease. We find people with a tendency towards weight gain less desirable, should those people also not have children? What about people with baldness? It seems absurd but maybe they also aren't all that desirable. Where is the line where we say "You are desirable enough to have children"? And if we draw a line, do we need to enforce it? I mean people with huntington's disease certainly cost society a lot without bringing as much benefit. Should we force people like that not to have kids? Where do we lay that line in the sand and say "this is for the greater good!"

To me, I entirely understand why people give you scorn for your opinion. It is a slippery slope and it goes against a fundamental human instinct that brings joy and happiness regardless of the overall cost, pain, and suffering.

Being wired to think that way doesn't make it right under any light whatsoever; and I never say anything about enforcing anything; that's where the slippery slope starts by you and everyone else who thinks the same, where people pretend you are talking about enforcing, but you are just bringing the _option_ of not having children as a valid way to end the suffering, because even talking about such option brings all the hatred when it should be seen as a logical way to avoid suffering without stepping on the rights of anyone to reproduce.

Your approach might reduce the rates of these genetic illnesses, but it would not eradicate them, as most commmon genetic illnesses have a non-negligible rate of spontaneous occurrence.

Do we know if latent precursors combine, or is it really spontaneous/random?

Great question! I would wager that both occur.

Each disease will have slightly different genetics, but Huntington's disease provides a good example. There, we know that some individuals have a predisposition to developing the disease - this bias results from having over a certain threshold of repeating DNA bases in the Huntingtin gene.

Here's an accessible discussion of Huntington's and similar diseases: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175376/ .

Sorry I might not have made it clear, I just understand the reason why people scorn you for your opinion. I think your opinion is at least somewhat valid and has merit. At the very least I think that it is worth debating and shouldn’t be met with scorn.

As a few have pointed out the slippery slope argument is a bad one. They are right. The slippery slope could be a logical fallacy. But logical fallacies often lead to scorning and anger and fights and such.

The slippery slope argument is nonsense. By that logic taxes is a slippery slope to communism. Employment a slippery slope to prostitution :)

We should encourage people with rare generic deceases to use fertility treatments that filters out particularly bad genes; or adopt children instead.

I agree that the slippery slope could be a logical fallacy. It really just describes why the parent post gets scorn when he brings up his idea. Lots of people believe logical fallacies and get upset because of those fallacies. Heck, look at the current US presidential administration.

By the way, there are a ton of people who actually do believe that taxes are a slippery slope to socialism! The employment one is funny. But I think there are people who believe consumerism or capitalism is a slippery slope to criminal activity like prostitution. People are so funny.

> We should encourage people with rare generic deceases to use fertility treatments that filters out particularly bad genes; or adopt children instead.

Where does it end? My Aunt had cancer. My father high blood pressure. I think one uncle on my estranged mothers family was quite mad.

Am I allowed to procreate? Who draws the line on what is an acceptable level of hereditary risk factors?

>We should encourage people with rare genetic diseases

That is the line. It ends there.

I think it's really dangerous to talk about we're wired to this or that. It does two things:

- give the thing an odd, unearned, protection status: lots of things people are wired to are frankly pretty terrible and we could do without them (hierarchical dominance dynamics);

- it's very hard to prove that we're actually wired to something vs it being cultural. Given that we can't even prove this, the above is extra strange: we might be giving special statuses to unnaturally developed processes, and the status quo.

Procreation is not special because people want it. It's special because of its effects on populations and politics. But that's neither here nor there in terms of whether or it makes sense for a given group of people to procreate. That question shouldn't be closed.

> Where is the line where we say "You are desirable enough to have children"?

If there is a process out there that already exists, and you find yourself really not wanting to make a decision that is relevant to the continuation of that process, here's a little secret: the decision nonetheless will be made, and always has been made, just not by you.

So there's no slippery slope here, because the selection process is already in place, we're just washing our hands of it, so it looks like an easy decision because it's not our fault when a child with a horrible disease is born. It similarly not our fault when some people are unable to develop relationships.

But it is real, it is true, and it happens. And we could make a difference.

This is the eternal question of whether humans are ready to actually take responsibility for the process of the world or if they want to continue let it flow freely hoping it works out...

You make a good point, although I have a reservation about you somehow knowing "we could do without" some wired instincts that at first glance seem destructive. It's hard to verify whether or not society would do better if people weren't wired that way, so it seems quite spurious to assume that that would be the case. If you do it from a purely ideological standpoint I can certainly see that, but then you have to recognise it's not a given: It's simply something that you wish was true.

For most of human history, surviving childhood was 50/50. Growing old enough to see your kids start having kids of their own was also rare. When you have a short life span, later in life things aren't selected against. But never in our history have we had the tools and the knowledge that we have now. We will continue to understand and stop these diseases.

There is a lot of diseases that can't be cured and will not be cured; just like you can't separate two twins conjoined by the head there are many other things that can't be reversed; pretending every disease can be cured or will be cured is irrational and irresponsible, at least not with technology from this millennium.

We can 3d print ultrasounds now [1], so really the issue is how wide spread we can deploy the tech and what the mother wants. But in time we'll understand how conjoining happens and maybe prevent this example.

In 1918 doctors didn't know what a virus really was. It could just hijack a cell to reproduce. Measles were a much more real threat, so they focused on that. 18 months later between 3 and 6% of the world's population was dead.

The 21st century will see things we dream of. We can modify t-cells with crispr to attack childhood cancer. There's a HIV vaccine that was successful in human trials [2]. Have a little more hope.

[1] https://www.ge.com/reports/brazilian-doctor-3d-printing-baby... [2] https://www.bbc.com/news/health-44738642

Dude this is the third millennium, not the second.

Ill do you one better mandatory genetic testing as a kid illegal to pass on the disease. Penalty is a permanent tax of up to 10% of your income for life.

No more disease in one generation.

How many genetic diseases are there and what percentage of people have them.

This is a very good question and puts the situation well into a perspective.

My cut feeling is that if we count every genetic disease then two digits are necessary to express this number.

There are a lot of obvious upsides to this, but the downsides are pretty dire.

There are very few human beings (if any) that don't have something lurking in their genetic history. An elevated risk factor for this or that.

It's potentially a great way to suppress particular groups of people since there are a lot of heritable diseases that are typically only carried by certain ethnic groups i.e. African Americans and sickle cell anemia.

Also where do you draw the line? Outlaw people from procreating if there's a 100% chance of inheritance? 50%? 1%?

What about nonfatal, inheritable stuff like obesity or blindness? Or fallen arches?

Even the "easy" case (a 100% inheritable, 100% fatal disease) is maybe more complicated than we want to think. What is "fatal?" Fatal in < 1 year? Fatal before adulthood? Fatal in one's 20s? What about a disease that is "fatal" in the sense that it just subtracts 5, 10, or 20 years from one's expected lifespan?

     Penalty is a permanent tax of up to 10% of your income for life.

Even this is problematic. What about very poor people without any money to tax, or what about very rich people who simply don't care and/or have so many tax loopholes that they pay no taxes despite living comfortably?

If you have no money to tax or so little you can barely survive you would be immune if you have so much its not painful enough let it scale up and allow no deductions.

Limit the ruling to conditions which can effectively be prevented with genetic testing which substantially burden society, and which society is willing to gratis help you prevent.

If its a 1% chance of transmission you have a 1% chance of a burdensome tax if its a 100% chance you have a 100% chance no need for us to worry personally about the chance of transmission.

Its not really a slippery slope as nobody is being denied the right to procreate it's just that if they know they have a genetic burden and choose to pass it on anyway they will have to help shoulder some of the financial load they put upon society.

It makes perfect sense to help people for free figure out what skeletons they have in their genetic closet. We all have some but some have a 1 in 100,000 chance of being born blind and some have a 50 50 chance of a painful ugly expensive death and should probably adopt.

One day soon, we'll probably be able to generate a hundred embryos, sequence their genomes, and just implant the ones that lack detectable genetic and chromosomal diseases. Same outcome, but without the ethical hurdles inhetent in choosing who gets to reproduce.

Embryo selection will still be hugely controversial, of course, but we have to overcome any reflex to ban the technique. Human genetic engineering is a technology that will profoundly reduce human suffering, and every year we delay it is pure misery.

Isn't that currently just a matter of legality and cost? You can already test for trisomy syndromes by sequencing a bit of the mother's blood around week 10 and isolating the embryo's chromosomes statistically - that probably takes a very fault tolerant kind of sequencing, but throw in an order of magnitude more money or a couple more years of cost reductions and you're there.

Right, but at ten weeks, all you can do is abort, which means it's only practical to screen for a few different genetic flaws this way, particularly if you expect some of them to be bad Mendelian inheritance and not some kind of rare structural flaw. Suppose you want to screen out four recessive traits and each one is inherited with probability 1/4, the probability of rolling a good combination is (3/4)^4 = ~30%. If you want to screen out ten such genes, the probability of a good combination drops to ~5%. With embryo selection, you can perform all the trials in parallel instead of sequentially at ten weeks per trial.

You're still flushing all the other embryos down the drain. It doesn't seem as awful as lots of other shit that happens every day, but it's certainly sketchy enough that I wouldn't do it. Humans are not livestock.

Can you define what’s the moral difference against trisomy prescreeners? Or are you against these too? Honest question btw.

I'm not 100% comfortable with the trisomy thing, but I understand why people do it. The "moral difference" is primarily one of scale. Choosing to abort or not, in one particular case, is a human decision. That's even true of abortions motivated by "less moral" factors like economics or convenience. Those are still human decisions.

Deliberately aborting 99 out of 100 or 999 out of 1000 or whatever, that's not how humans interact with each other. That's the sort of decision-making I reserve for cattle or other livestock. (Although we wouldn't make much money if we were so Procrustean in our evaluation...) In that sphere, it's considered immoral by lots of perfectly sane people.

I'm not saying that this practice will never be normalized and accepted by most people. I am saying that if researchers try a little harder and develop methods with the same results but less abortion, the world will be a better place.

Good point about scale. Tbh. I doubt that more than an 1/10 ratio is going to be feasible due to limits given from female biology. If people start doing that, something like CRISPR will soon be employed to fix such issues directly - if the west doesn’t allow it, people will simply travel to a country that will. For families with severe disorders, the cost of doing so will be much lower than to just take the chances with nature, so I think there’s going to be sort of a price balance for each illness. The main risk IMO is a Gattaca-style dystopia.

Not all sunshine & roses. Here's a dark factoid for you- my memory is a bit fuzzy on when you chose mother's blood vs amniotic fluid sample for the test, but at the time I learned about all this, the odds of taking the amniotic fluid sample causing spontaneous abortion, were higher than the odds of the fetus having the more common trisomy conditions. For any particular fetus, the test was more risky than the disease.

It doesn't follow that the test is useless: you're still minimizing the number of people with genetic abnormalities, even if you're causing some spontaneous abortions along the way.

Yes, I don't claim the test is useless. But it was an unexpected moral quandary, as my spouse and I are not strict believers in either pro-choice or pro-life.

That depends on how you weigh a spontaneous abortion against having a child that will never be independent.

The test I’m referring to only uses blood from the mother, thus it should be risk free.

I was under the impression that this was already being done?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3306852/

Cool. We live in the future.

Unfortunately, based on some quick reading, the technique is regulated in many areas and used only in cases where some specific genetic disease is suspected. This artificial limitation is a disgrace.

Creating hundreds of human beings and then discarding them is the actual disgrace.

Embryos at the stage before you implant them into a womb are not human beings.

Yeah, well, you know, that's just like, uh, your opinion, man.

Do you think it is a disgrace to scrape your hand on some pavement? To take a poop? In both of those cases you lose a ton of cells, but I do not think it's reasonable to assume that they are some great loss. They are cells.

>Yeah the only end of it is gonna be when people with such diseases stop having children, but just pointing out such an obvious solution generates all kinds of scorn from the people you are talking to

Perhaps because not having existed can be equally as tragic as having existing but having a disease?

Lots of people are living today who were born blind, or with this or that genetic tendency. And they live their lives as best as they can.

Is the argument that these people better they weren't born at all?

Doesn't that same argument (about not having existed at all) apply to all forms of birth control, including abstinence? Almost every time a woman menstruates the 'tragedy' of someone not existing has potentially occurred. To call this a tragedy at all seems absurd to me, and no, it is nowhere near equally tragic as living with many hereditary diseases.

I think there are arguments to be made that not every hint of imperfection should be eliminated (who gets to decide what imperfection means?), but your argument isn't one of those.

If I had never existed (for any reason) nobody would be able to miss me, least of all me. My parents would have tried again a month later and gotten someone else. Perhaps someone better, we'll never know.

>Is the argument that these people better they weren't born at all?

This statement is true for all people.

According to whom? Not to the persons themselves if you ask them.

Some will agree to that, most wont. So hardly "true to all people" except if qualified ("according to my philosophy of life and not their actual sentiments on the matter").

Immunotherapy could help here. Just declaring that those testing positive for Huntington should never have kids is a form of moral nihilism and skips over the moral conversation heading straight for the governance “solution”. There are plenty of times I’m glad for rights based constitutions and keeping “solutions” like this out of government is one of them.

The classical solution of preventing individuals reproducing doesn't have to the the only solution. Prevent by natural reproductive methods perhaps, but at some point, we're going to be able to genetically screen individual sperm and eggs. Though the latter will be a lot more difficult with the limited supply. The visceral opposition will be there, but the philosophical issue is partially sidestepped.

There is clearly a hierarchy of problem genes which will mean that the philosophical issue is not eliminated. Debilitating diseases is obviously something people are not opposed to eliminating. Eliminating the more subtle personality "defects" though will prove a lot more problematic where we start going into issues of homogenisation in a population.

Allow me to introduce you to CRISPR/Cas9

https://www.nature.com/news/crispr-fixes-disease-gene-in-via...

https://en.wikipedia.org/wiki/Woody_Guthrie

> Guthrie was married three times and fathered eight children

However, Huntington's also robs you of your impulse control, so simply resolving to never have children if you carry (or suspect you carry) the Huntingtin allele may not be enough:

https://www.ncbi.nlm.nih.gov/pubmed/28339399

And it would be very hard to argue that it would be better for Woody Guthrie -- or his children, or grandchildren -- not to have existed. Besides being one of the most influential musicians of the 20th century, two of his children and four of his grandchildren (and so far one of his great-grandchildren) are notable musicians in their own right.

Eugenics has two side - discouraging certain people to have fewer (or no) children and encouraging others to have more. We seem to be obsessed with the fewer side and don’t look much at the more side.

The most powerful eugenics force in history is the modern education system. It is extremely effective in identifying those with high levels of abstract reasoning and strongly discouraging them from having children. Gets very little attention outside of documentaries masquerading as comedies.

In East Germany university students were encouraged to have children in an attempt to do just that.

Your solution might be worth discussing if the genetic mutation leads to a birth defect. But for later onset (like >35 years in this case), we'll be in 2050s. Even with a pessimistic view of things, we might find a cure for many/most of the diseases that affect us today. Honestly, I can't even imagine what the 2050s are going to look like.

The problem with the suggestion (or that conversation) is that it creates guilt in people carrying that disease for no fault of theirs. No I am not religious.

The overshadowing argument against this, is the "slippery slope" argument. Today you can reliably screen for Downs, and most of the developed world do. Tomorrow it might be for Huntingtons (btw, we're making progress on testing a fetus for all kinds of genetic markers with a simple blood sample from the mother). But when will we stop? Predisposed for depression? Anger issues? Dwarfism?

I agree that for simple things such as Downs and Huntingtons it's fine. I'd prefer to know as a parent, but we need to have a deep and reflective discussion about the ethics and agree on the guiding principle for the future.

It's not tomorrow, some people already screen for dwarfism or deafness to give them to their child.

https://www.nytimes.com/2006/12/05/health/05essa.html

As others have said, HD is usually not diagnosed until well after you have children. Also, some people can be carriers without actually exhibiting symptoms. It goes like this:

1 - There's a particular sequence of bases that are repeated a certain number of times on a certain chromosome 2 - Below 25 repeats: normal, no HD 3 - 25~35 repeats: no HD but there's a risk of spontaneous increase when generating sperm/ovules 4 - 35+ you have HD with more repeats meaning earlier onset and faster progression

My wife's mother has 40 repeats so she's on the milder side of the spectrum(age of onset ~50 and progression is steady but somewhat slow compared to her brother who started at 38)

Individuals in the 25~35 repeats bracket can have children with HD(especially fathers since it seems that there's a higher incidence of increase for them, for some reason)

In our case, my wife tested for this specifically once we seriously started considering the possibility of marriage and children. I'd decided I'd marry her regardless of the outcome but children were a different question altogether, so in that way I do agree with you, but it's definitely not a solution to the problem in the broad case of HD, but in individual cases where it is known to run in the family some people may choose to not have children if they are diagnosed at an early enough age.

That being said, most people would prefer not to know if they have it when a parent is diagnosed, only ~5% of people at risk actually test for it with the vast majority preferring to live in denial. Humans are weird like that, but having seen firsthand what this did to my wife and her family when her mother was diagnosed I don't think I can really blame someone for not wanting to know. You can't make judgements about something like that until you've been in their shoes

"people voluntarily using birth control..."

You do understand that some folks have few options for this, right? I have never wanted children. I'm female. I cannot take hormonal birth control. I would have been sterilized early in life, but most doctors won't do it to young folks. I'm nearly 40 now. Surgical sterilization is more of an option, but is still rather expensive. Additionally, it doesn't always prevent pregnancy and the option that would - a hysterectomy - isn't a healthy thing to do to an otherwise healthy person.

Condoms have their own downsides. Some of the lubricants make me itch. Plus the risk of breaking and all of that stuff. Sure, it is my option, but it sucks. Not to mention that they change the way sex feels for me, let alone the man. Luckily, my spouse is more than willing to be sterilized.

Even with various birth control methods, folks still become pregnant.

Abortion isn't always an option for folks - especially with states and entire countries restricting abortion for any reason. I'm not sure if doctors would test for these genes pre-birth either like they do for a few disorders, and the test itself has has some risks to the fetus.

I can only imagine the hell someone would go through that wants to have children, yet are simply too afraid of passed on some gene that might not be passed on - let alone that they might not even know it runs in the family. I'm not sure they'd be able to avoid having children simply by a combination of accident and happenstance. I've been lucky enough to avoid it, but many others have not and had few realistic options once it happened.

Forcing people to do things because they were diagnosed will only make people avoid being diagnosed.

Two thoughts: 1. It's likely that IVF will soon allow people to screen for conditions like Huntington's prior to implantation. 2. Your suggestion makes it sound like a life lived with Huntington's isn't worth living. If you had the choice, would you choose never having been born over 40 healthy years? Only 100 years ago, this was longer than the average lifespan.

embryo gene editing or sperm/egg screening could work too.

Sorry you had to go through that. It really sucks. My mom died from hd, and I have it too.

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