Morality: Incest Laws

[Terralthra]

Get back to me when you can avoid leading off with a slippery slope fallacy.

A couple of questions.

What is the mortality rate of this disease?

100%. The vast majority of those with the disease die before the age of five, having never been capable of independent locomotion or communication. Those who get "lucky" and have Late-Onset Tay-Sachs live into their teenage years in pain before dying of the same set of causes, and the extremely rare case, late 20s. Unless hit by a car before Tay-Sachs can finish destroying their brain from the inside, Tay-Sachs is uniformly fatal.

How does it compare to the infant mortality rate in societies where modern medical care is not available?

As above, much much higher.

Say that there is a condition which causes horrible death in almost one fourth of all people who have it, prior to the age of five. Would you force adults to abort a fetus with this condition? Would you advocate sterilizing them to keep them from passing it on?

Is there a reliable test for it? Is there a reliable test for adults who are carriers? Is there a treatment? What are the consequences for carriers, or those who have the condition but are not killed by it?

What if the condition is "being born in Afghanistan?" Being born in Afghanistan carries with it a 15% chance of dying in infancy, and a 23% chance of dying before the age of five.

And don't just say "obviously I wouldn't call for mandatory abortions in Afghanistan to avoid the infant mortality rate, that would be stupid." I want to know why it is stupid. Because there are a LOT of genetic conditions which are hardly more fatal than simply happening to come into the world in the wrong country... and which have historically been considered as horrible genetic defects to be purged from the human race by abortions and sterilization. Which strikes me as a profoundly hypocritical argument: if it's about avoiding misery and death in infants, there are more efficient ways to do that.

So I'm with Broomstick on this one. I don't trust negative eugenics arguments, because many of them seem to ignore utilitarian issues when only utilitarianism could possibly justify the program in the first place.

Holy false analogy! People in Afghanistan don't suffer from Afghanistanitis that causes their lung muscles or peristalsis to stop working, they suffer from (generally) treatable diseases and bullets being randomly inserted into vital organs.

I'm against mandatory abortion in Afghanistan because the causes of infant mortality are more justifiably addressed through external causes; not just that, but mandatory abortion might reduce child suffering (in an abstract way), but it doesn't make life any better for the already-existing population. That population would benefit from reducing the causes of high infant mortality. Indeed, to even provide the infrastructure to provide abortifacients to the entire Afghani population would reduce the causes of infant mortality without actually needing to provide the abortifacients themselves.

There's no analogous process for Tay-Sachs. Fetuses who express Tay-Sachs will die. Painfully. Typically having never experienced life at all.

In return for your slightly silly analogy, let me go the other direction: Anencephaly. A rare birth defect caused by the neural tube not folding over properly in the first trimester, it is not genetic, but can nonetheless be easily detected by ultrasound and other procedures during pregnancy. Most fetuses with this condition die in childbirth, with the rest typically dying within a few hours afterward.

Would you support mandatory detection (ultrasound @ first trimester is sufficient) and/or abortion for fetuses with this condition? If not mandatory abortion, how about recommended? If not, why not? If so, where do you draw the line? Why is it ok to require or recommend it for Anencephaly, but not Tay-Sachs?

[Broomstick]

Get back to me when you can avoid leading off with a slippery slope fallacy.

A couple of questions.

What is the mortality rate of this disease?

100%. The vast majority of those with the disease die before the age of five, having never been capable of independent locomotion or communication. Those who get "lucky" and have Late-Onset Tay-Sachs live into their teenage years in pain before dying of the same set of causes, and the extremely rare case, late 20s. Unless hit by a car before Tay-Sachs can finish destroying their brain from the inside, Tay-Sachs is uniformly fatal.

Go back and read the link I posted earlier. Wait, I'll make it easier for you - look here, scroll down the page for the words from a 41 year old woman with LOTS. Her older sister also has it. The woman who speaks is not in pain - she is frustrated because she can't do things she did before but I see no indication that she is miserable enough to want to die or thinks her life was not worth living. Please provide a cite that Tay Sachs causes pain to those who have it. Frustration, yes. Disability, yes, but where is the evidence for this pain you are so certain is there?

Which is in no way to deny that Tay Sachs, particularly infant's TS, is a horrible condition. It is horrible. But that doesn't mean those with it want to die, or would rather have never existed.

In return for your slightly silly analogy, let me go the other direction: Anencephaly. A rare birth defect caused by the neural tube not folding over properly in the first trimester, it is not genetic, but can nonetheless be easily detected by ultrasound and other procedures during pregnancy. Most fetuses with this condition die in childbirth, with the rest typically dying within a few hours afterward.

Would you support mandatory detection (ultrasound @ first trimester is sufficient) and/or abortion for fetuses with this condition? If not mandatory abortion, how about recommended? If not, why not? If so, where do you draw the line? Why is it ok to require or recommend it for Anencephaly, but not Tay-Sachs?

Here is MY position on your anencephaly example (which is, I might mention the extreme end of the spectrum my Other Half happens to be on, that of "neural tube defects" or NTD's - his occurred near the base of the spine, as opposed to the brain)

1) FIRST let's try to prevent this - NTD's are associated with malnutrition and/or a lack of folic acid. Make sure all women of childbearing age are receiving sufficient folic acid. In fact, most nations routinely do this by fortifying foods with folic acid, such as breads and cereals.

2) Routine screening for NTD's is recommended even today. In fact, even in the medical Third World of the US the state will pay for poor pregnant women to get prenatal care and screenings - wow, who'd have guessed? Ultrasound is cheap and non-invasive. It actually won't catch ALL NTD's, minor instances will not show up on ultrasound, but it will find the really bad cases like anencephaly.

3) When anencephaly is discovered the pregnant woman (and her partner/sperm donor/family/whoever else is appropriate) should be counseled about what exactly is going on here. At present, anencephaly is devastating and nearly always fatal at birth or shortly after. There really isn't any treatment other than palliative care.

4) Offer the woman her two choices:
---- A) abort now
---- B) carry the pregnancy to term, at which point if the child is not stillborn palliative care will be offered, as for any other terminal illness. No resuscitation will be provided when death occurs.

The thing is, anencephaly is so rapidly fatal that it imposes almost nothing on societal resources, or even family resources. It's not that good a comparison with TS because TS involves an apparently normal child at birth that then spends several years deteriorating (or a child who grows up normally or near normally to decline later on in the case of LOTS). A better analogy is severe spina bifida where you have severe disability, possible cognitive complications, but a high risk of death and/or deterioration in childhood.

The thing is, biology is messy. While there may be clear-cut cases there are a lot of grey areas and it doesn't seem possible or practical to eliminate them. Some of these issues are hard, some of them don't have "good" answers and your left with trying to figure out what is the lesser evil.

But let's set aside the real world for a moment, shall we? How about - what would it be like in a PERFECT world (which we know will never exist, but what the hell, right?)

I'd like to see routine genetic screening for EVERYONE, everywhere, regardless of income. Of course, if we did that everyone would find out that we all carry several genes (at least!) that if paired with a match will cause horrible genetic disease. This is a fact of life. (And back to the OP - it may be that the nearly universal ban on inbreeding in human societies is sufficiently effective that the occasional incestuous conception can usually squeak by without disaster, but if that taboo was not in place incest might be common enough to actually be a problem)

I'd like to educate people about what all that means. If a man is a TS and harlequin ichthyosis carrier, and his wife is a cystic fibrosis and sickle carrier, but neither has the defective genes of the other then they can have kids without worrying about any of those. Yay them. But if they find out they have a potential for a bad match then offer them options. What options?

- Pre-implantation diagnosis
- Screening of pregnancies
- Abortion if woman/couple opt for it (and most people will in the case of really bad defects, as we have seen in the real world)
- Option to self-sterilize then preferential treatment for adopting children.

People who are born with a genetic disease (because spontaneous mutations do occur, and some will slip through the screening net) will receive appropriate treatment and assistance to live as full a life as possible.

People who carry a dominant bad trait will be encouraged not to pass it on - again, pre-implantation screening, pregnancy screening, abortion options, preference for adopting rather than biologically reproducing. But not coerced - some dominant gene problems really aren't that horrific to deal with. I mean, being an achondroplasic dwarf isn't wonderful, but typically their lives aren't so horrific as to say they'd be better off never having existed in the first place.

But really, the ultimate fantasy is to fix bad genes - so that someone who does carry TS can choose to eliminate it from their family line altogether. Of course, this is assuming that such fixing doesn't cause additional problems down the line... but we're talking fantasy here so lets wave a magic wand and say it's all good.

The downside of all this, of course, is that we live in the real world, which is messy and full of shades of grey.

[Terralthra]

What is the mortality rate of this disease?

100%. The vast majority of those with the disease die before the age of five, having never been capable of independent locomotion or communication. Those who get "lucky" and have Late-Onset Tay-Sachs live into their teenage years in pain before dying of the same set of causes, and the extremely rare case, late 20s. Unless hit by a car before Tay-Sachs can finish destroying their brain from the inside, Tay-Sachs is uniformly fatal.

Go back and read the link I posted earlier. Wait, I'll make it easier for you - look here, scroll down the page for the words from a 41 year old woman with LOTS. Her older sister also has it. The woman who speaks is not in pain - she is frustrated because she can't do things she did before but I see no indication that she is miserable enough to want to die or thinks her life was not worth living. Please provide a cite that Tay Sachs causes pain to those who have it. Frustration, yes. Disability, yes, but where is the evidence for this pain you are so certain is there?

Which is in no way to deny that Tay Sachs, particularly infant's TS, is a horrible condition. It is horrible. But that doesn't mean those with it want to die, or would rather have never existed.

Your research is typically incomplete. Tay-Sachs is detected in fetuses using a chemical test for the presence of Hex-A. Tay-Sachs carriers have less; fetuses with normal Tay-Sachs have 0. Those who will suffer from LOTS have carrier levels of Hex-A, gradually decreasing over time. People who have LOTS will not be caught by the prenatal testing Alyrium proposed, and are hence irrelevant to his proposed policy.

In return for your slightly silly analogy, let me go the other direction: Anencephaly. A rare birth defect caused by the neural tube not folding over properly in the first trimester, it is not genetic, but can nonetheless be easily detected by ultrasound and other procedures during pregnancy. Most fetuses with this condition die in childbirth, with the rest typically dying within a few hours afterward.

Would you support mandatory detection (ultrasound @ first trimester is sufficient) and/or abortion for fetuses with this condition? If not mandatory abortion, how about recommended? If not, why not? If so, where do you draw the line? Why is it ok to require or recommend it for Anencephaly, but not Tay-Sachs?

Here is MY position on your anencephaly example (which is, I might mention the extreme end of the spectrum my Other Half happens to be on, that of "neural tube defects" or NTD's - his occurred near the base of the spine, as opposed to the brain)

1) FIRST let's try to prevent this - NTD's are associated with malnutrition and/or a lack of folic acid. Make sure all women of childbearing age are receiving sufficient folic acid. In fact, most nations routinely do this by fortifying foods with folic acid, such as breads and cereals.

2) Routine screening for NTD's is recommended even today. In fact, even in the medical Third World of the US the state will pay for poor pregnant women to get prenatal care and screenings - wow, who'd have guessed? Ultrasound is cheap and non-invasive. It actually won't catch ALL NTD's, minor instances will not show up on ultrasound, but it will find the really bad cases like anencephaly.

3) When anencephaly is discovered the pregnant woman (and her partner/sperm donor/family/whoever else is appropriate) should be counseled about what exactly is going on here. At present, anencephaly is devastating and nearly always fatal at birth or shortly after. There really isn't any treatment other than palliative care.

4) Offer the woman her two choices:
---- A) abort now
---- B) carry the pregnancy to term, at which point if the child is not stillborn palliative care will be offered, as for any other terminal illness. No resuscitation will be provided when death occurs.

The thing is, anencephaly is so rapidly fatal that it imposes almost nothing on societal resources, or even family resources.

Funny, when it's a pregnant woman who wants an abortion, pregnancy is a severe condition, crippling and draining, which she is under no obligation to endure. When she's carrying a fetus destined to die in childbirth or shortly thereafter, pregnancy isn't even an imposition. Curious.

It's not that good a comparison with TS because TS involves an apparently normal child at birth that then spends several years deteriorating (or a child who grows up normally or near normally to decline later on in the case of LOTS). A better analogy is severe spina bifida where you have severe disability, possible cognitive complications, but a high risk of death and/or deterioration in childhood.

The thing is, biology is messy. While there may be clear-cut cases there are a lot of grey areas and it doesn't seem possible or practical to eliminate them. Some of these issues are hard, some of them don't have "good" answers and your left with trying to figure out what is the lesser evil.

But let's set aside the real world for a moment, shall we? How about - what would it be like in a PERFECT world (which we know will never exist, but what the hell, right?)

I'd like to see routine genetic screening for EVERYONE, everywhere, regardless of income. Of course, if we did that everyone would find out that we all carry several genes (at least!) that if paired with a match will cause horrible genetic disease. This is a fact of life. (And back to the OP - it may be that the nearly universal ban on inbreeding in human societies is sufficiently effective that the occasional incestuous conception can usually squeak by without disaster, but if that taboo was not in place incest might be common enough to actually be a problem)

I'd like to educate people about what all that means. If a man is a TS and harlequin ichthyosis carrier, and his wife is a cystic fibrosis and sickle carrier, but neither has the defective genes of the other then they can have kids without worrying about any of those. Yay them. But if they find out they have a potential for a bad match then offer them options. What options?

- Pre-implantation diagnosis
- Screening of pregnancies
- Abortion if woman/couple opt for it (and most people will in the case of really bad defects, as we have seen in the real world)
- Option to self-sterilize then preferential treatment for adopting children.

People who are born with a genetic disease (because spontaneous mutations do occur, and some will slip through the screening net) will receive appropriate treatment and assistance to live as full a life as possible.

People who carry a dominant bad trait will be encouraged not to pass it on - again, pre-implantation screening, pregnancy screening, abortion options, preference for adopting rather than biologically reproducing. But not coerced - some dominant gene problems really aren't that horrific to deal with. I mean, being an achondroplasic dwarf isn't wonderful, but typically their lives aren't so horrific as to say they'd be better off never having existed in the first place.

But really, the ultimate fantasy is to fix bad genes - so that someone who does carry TS can choose to eliminate it from their family line altogether. Of course, this is assuming that such fixing doesn't cause additional problems down the line... but we're talking fantasy here so lets wave a magic wand and say it's all good.

The downside of all this, of course, is that we live in the real world, which is messy and full of shades of grey.

Of course it is. That's why the immediate jumping to the worst modern example is a slippery slope fallacy.

[Broomstick]

Go back and read the link I posted earlier. Wait, I'll make it easier for you - look here, scroll down the page for the words from a 41 year old woman with LOTS. Her older sister also has it. The woman who speaks is not in pain - she is frustrated because she can't do things she did before but I see no indication that she is miserable enough to want to die or thinks her life was not worth living. Please provide a cite that Tay Sachs causes pain to those who have it. Frustration, yes. Disability, yes, but where is the evidence for this pain you are so certain is there?

Which is in no way to deny that Tay Sachs, particularly infant's TS, is a horrible condition. It is horrible. But that doesn't mean those with it want to die, or would rather have never existed.

Your research is typically incomplete. Tay-Sachs is detected in fetuses using a chemical test for the presence of Hex-A. Tay-Sachs carriers have less; fetuses with normal Tay-Sachs have 0. Those who will suffer from LOTS have carrier levels of Hex-A, gradually decreasing over time. People who have LOTS will not be caught by the prenatal testing Alyrium proposed, and are hence irrelevant to his proposed policy.

Not quite correct.

Carriers typically have 50% of normal Hex-A. Infantile TS sufferers typically have 0. LOTS have 5-15% of Hex-A since birth and no, it doesn't decrease over time. What happens over time is a slow accumulation of gangliosides. The more Hex-A the slower the accumulation, so a LOTS sufferer with 15% of normal Hex-A production will experience symptoms later in life than a LOTS sufferer with only 5%.

There have been attempts to artificially replace the missing Hex-A as we replace missing insulin in diabetics. IF this could be achieved then it might be a valid treatment for the disorder that, if consistently applied, could avoid all damage resulting from the defective/missing enzymes, but so far no one has come up with an effective means to get Hex-A across the blood-brain barrier. If that could be done TS might go from a nearly always fatal condition to a chronic but treatable condition.

In fact, ALL forms of Tay-Sachs are detectable by prenatal testing. However, a test that only detects a specific TS mutation may well miss an alternate TS mutation. There are at least 100 identified Hex-A mutations as of this point in time. Most TS is caused by a small subset of those, but an overly specific test will miss some TS, but a comprehensive test will find all TS. A comprehensive test, however, will also cost more to perform.

Funny, when it's a pregnant woman who wants an abortion, pregnancy is a severe condition, crippling and draining, which she is under no obligation to endure. When she's carrying a fetus destined to die in childbirth or shortly thereafter, pregnancy isn't even an imposition. Curious.

Not really - historically, the only means to obtain a legal abortion was to play up the downsides of a particular pregnancy. Thus, a woman wanting an abortion had strong incentive to play up how awful said pregnancy was.

Nowadays, while abortion is legal women still experience pressure not to abort. Therefore, they still feel compelled to justify their desire through "objective" means, such as it being a "severe condition".

Meanwhile, a woman strongly desiring a child has ample incentive to downplay the risks and discomforts of pregnancy.

The above sufficiently explains the dilemma you are experiencing.

[Alyrium Denryle]

I base that on the historical record of what happened last time sterializing people with genetic defects was popular.

Who said i would be sterilizing anyone? I said in a prior post that sterilization is not typically necessary.

First: They were sterilizing people based on almost no scientific information at all. There was no such legal concept as informed consent, pop gen was in its infancy, and genetic diagnostics did not exist. The discipline of biomedical ethics did not exist either.

There is not such thing as a "perfect government"

You dont even need a perfect one. You need one that is sufficiently competent and non-corrupt to put in place the necessary safeguards to prevent Bad Shit (tm) from happening. Fat chance, I know.

However i am looking at this from a different point of view. I want a lot of things to occur that I know damn well wont ever happen. Meaningful; campaign finance reform in the US, reduction of greenhouse gases, effective population control. I want these things (but have given up hope on them) because I ask the questions "What is this in itself?" and "if I were a Benevolent Dictator, how would things be?"

The problems you speak of are perfectly valid problems of implementation. I would never dream of pushing eugenics as the world is now. That does not however effect the rightness or wrongness of the practice.

Being a carrier for a severe genetic disease may actually be an advantage in the right circumstances - sickle cell and malaria being the most well-known example.

Which is why I would not eliminate carriers.

I am also aware that the lives of the disabled are often perceived by the able-bodied to be more horrible than they actually. I am married to a man who, due to a birth defect, has spent almost every day of his life in pain, and you would use that as an argument that he should have never lived - but he vehemently disagrees with that position! He is the one doing the suffering, not you, and he judges life to be well worth living despite his hardships. He wants to live - and regards with horror the idea that anyone with his defect should be eliminated from existence. That's where your argument breaks down. I am not convinced how you value suffering in this context is properly weighted.

And I do not want to eliminate all defects. Just the really awful ones. is a person with disease X likely to live a happy and meaningful life? Yes? Awesome! No need to get rid of it. That having been said (and this is me playing DA here), if a person with disease X never existed, would anyone know the difference? No. If we were to construct a method (one which i do not think is possible, bear with me) by which we could knock out the extra copy of chromosome 21 in a developing downs syndrome fetus, would anyone know the difference provided no one is actually killed or harmed? No.

The issue has less to do with any harm done, and an improper weight to suffering put in place by the disabled. They cognitively link the non-existance of people in their group with the non-existence of themselves. It is why a lot of deaf people get really pissed off about the existence of cochlear implants (barring those who are not candidates of course). They fear the destruction of their community to the extent that such exists because it implies something about the destruction of themselves. It is why gay people freak the fuck out when something comes along that might decrease the chances of a gay person being born such as certain prenatal hormone treatments. I feel it to, I just set those feelings aside.

My husband did NOT consent to being sterilized as a young boy. Neither did his parents - it was done ENTIRLEY without the knowledge of either him or his family.

And I was supposed to know this from your rather cryptic statement how exactly? I assumed that you or your husband had a defect that you chose not to pass on that later turned out to not to have a genetic cause, and you being older are no longer able to really have healthy kids.

That having been said, what happened to your husband was monstrous. When was he born by chance? What that doctor did should have been fairly illegal after the 60s or so.

Of course, I am not advocating sterilization either. Just selection of healthy embryos... one way or the other.

Except that by the time you get to amniocentisis and chorionic villi sampling it's too late for a chemical abortion.

There are (and in the future will be) other tests that can be done much earlier. Fetal Cells in Maternal Blood for example is one under development. Transcervical retrival of fetal propoblast cells is also done. Technology in this regard continues to increase. They are also a hell of a lot technically easier than gene therapy.

It is, nonetheless, a historical fact - the Nazis started with the handicapped and moved on to slaughtering millions in the name of perfecting the human race. It is entirely relevant to the topic at hand.

Only if you assume that any attempt to remove lethal genetic conditions from the population is equivalent to a fanatical and twisted notion of "perfection".

Damn right I don't trust the elected politicians to make the decisions. Last time around, the doctors didn't do too well, either.

That is because the doctors were inculcated in the perversion that was social darwinism. Not so much anymore, and if you have panels of bioethicists with veto power over the technical decisions made by doctors and geneticists, you wont have that issue.

Particuarly when we have instances where securing voluntary cooperation has good results.

It requires a very specific cultural context for that, frankly. Tay Sachs has been in jewish populations for a long time, and they all know the Horror that brings. The problem is long term, namely their marriage practices just lead to a proliferation of Tay Sachs carriers that will eventually reverse all their good work. You want selection to act, whether artificial or natural. With assortative mating, the carriers hide the Tay Sachs recessive lethal from selection. In population terms, it would have been better for them to allow random mating to take place with respect to that locus, then the gene would be gone in 12 generations. If you want to have your cake and also eat it, you can remove carriers from the gene pool in 1 generation. To do that though, you have to mandate that the fetuses themselves be screened and carriers removed as well as infected. You may be able to get Ashkenazim to agree to that.

For something like ALD though, where there is not a culture of preventing a certain scourge on the population, you may have to take more drastic measures. More on that later.

Are you even aware of the carrier rate of TS in the general population? It's one in 250. That means to eliminate ALL carriers of TS you have to abort one in every 250 babies conceived for an entire generation. How many millions will that be? Have you not slid down the slippery slope into a pile of millions abortions just there?

Considering that the miscarriage rate for known pregnancies is 20% or so, and the abortion rate in the US is 22.6%. 1 in 250 is a drop in the abortion bucket. You change 22.6% to 22.64%. Oh the horrors. If you consider a generation to be approximately 25 years (defined as the mean age of reproduction) you end up with a total of ~400 thousand abortions to get rid of Tay Sach--Forever. In the US anyway. Here, let me give you world stats!

14,560,000 abortions over 26 years to forever get rid of Tay Sachs. Compared to... 1,040,000,000 regular non-tay sachs abortions over that same time period.


I fail to see the problem with the abortion numbers. A fetus has Zero value. The only problem I am seeing is the significant negative utility involved with forcing them (yeah...forcibly aborting someone's second trimester fetus is bad... which is what a medical abortion rather than surgical is for, which is why I LOVE first trimester genetic diagnostics, preferably in the first 8 weeks) . Obviously a cultural shift would be required, one which is morally obligatory, but is probably not going to happen. Sort of like a lot of other things like getting the chinese to stop eating endangered species.

Yeah right - how about we have a committte of severely disabled people with veto power instead? Shouldn't it be cripples making decisions for cripples?

Um... who said I wanted to get rid of cripples? Why exactly are you building this particular strawman, drawing a swastika on it, and then setting it on fire?

In any case, I think you will have a hard time finding someone with a recessive, dominant (yeesh), or sex-linked lethal condition to put on the panel.

One in 250 people walking the earth today is a carrier. That's a fuck of a lot of carriers you're talking about. A lot of births to be prevented.

See above

That's for just ONE genetic disease - things like cystic fibrosis have just a high a carrier rate. Who will be left to continue the species?

Cystic fibrosis can be successfully treated (if you are rich...) and people with it can live meaningful lives. That disease is not on the List. If you want to put it on the list, fine...

Lets see, CF has a carrier rate of 1 in 25ish... It looks like I just have to move zeros. 145 million abortions over the next 25 years... compared to the 1 billion abortions that would occur anyway. I am somewhat curious how much overlap there is in the numbers of CF and regular abortions...

Frankly, our population could use a few hundred million more abortions just to get our population growth under control (now I am just being ghoulish and exercising dark humor, pay me no mind)

Not if you have to run 6 billion samples. The money isn't there for it.

Ok, assuming we could get perfect coverage in africa, asia, and latin america...

$901,041,666.66 annually. Our government has lost as in misplaced, more than that in Iraq. In fact, we could pay for this for ten years just on the money lost there.

Granted, this is for 31 different Single Nucleotide Polymorphisms that can be used as markers using techniques that are 4 years old. This also does not take into account the abortions, just the screening. I will need to look at the number of specific mutations that cause something like Tay Sachs or ALD. A standard battery of 25 SNPs is used to screen for CF though.

In any case, the screening is itself inherently valuable, and well worth that monetary cost even if we only give the mother the option of abortion rather than mandating it.

Having diabetics continually dependent on insulin sucks, too, but it's better than letting them die, isn't it?

It certainly is. But you dont have to put diabetics into death camps to cure diabetes. If you can fix the underlying metabolic condition, you get rid of it.

Again, why the SS Strawman?

Gene therapy might be a one-shot treatment, after all, we don't know yet if it's that or requires continual doses.

There are massive massive problems with gene therapy. Obviously if and when it becomes available and the effects permanent, it is preferable to selective abortion.

But I trust you to be a good utilitarian, Alyrium. So I think you'll agree with me when I say that if we're doing this on utilitarian grounds, I have to say that getting rid of Tay-Sachs in the general population this way is effectively out of the question.

The fetus has zero utility itself. There are an infinite number of potential people, 20% miscarry anyway. The problem is not the death of the fetus. It is the trauma and violation caused to the mother. I will be honest, I dont know how to weigh that. There is no way to mitigate the suffering and pain caused to everyone by a child being born with a lethal genotype. Everyone suffers. The pain of childbirth, the sadness, the pain for the child. Is it better to sedate someone and snip out the fetus against their will? Hand them a pill with massive doses of abortificents and say "Take this. Trust me, everyone will be better off this way"? There are ways to mitigate that.

But I think this adequately illustrates an important point about mandatory genetic testing in general: so far, it is not without risks, and if you're going to test for a rare disease in a large population, you must have a way to do it without risk, or the suffering caused by false positive diagnosis will outweigh the suffering avoided by the tests.

This is true, which is why you get as much bang for your buck out of the tests as you can. Some diseases you wont even have on the Abort list, just the "screen and let the parents know" list.

I think this is also a good point. Once you factor in all the many, many possible genetic diseases, there are a lot of carriers when you take them all together. Make a policy of aborting carriers as a firebreak against the genetic diseases in question, and like Broomstick, I have to wonder how many people would be left.

[Alyrium Denryle]

As an addendum:

The cost listed above is just for the diagnostics. I did not factor in the cost of doctor visits.

[Simon_Jester]

14,560,000 abortions over 26 years to forever get rid of Tay Sachs. Compared to... 1,040,000,000 regular non-tay sachs abortions over that same time period.

The fact that 50X things happen in a given period of time do not mean it is ethical to do X. In this case, the real heart of the problem is the forced abortion of Tay-Sachs carrying fetuses, when we know perfectly well that a Tay-Sachs carrier can lead a happy life with no adverse consequences whatsoever, except for the small risk of the suffering of having a baby who expresses Tay-Sachs disease if they are unlucky and have children with another carrier.

I fail to see the problem with the abortion numbers. A fetus has Zero value. The only problem I am seeing is the significant negative utility involved with forcing them (yeah...forcibly aborting someone's second trimester fetus is bad... which is what a medical abortion rather than surgical is for, which is why I LOVE first trimester genetic diagnostics, preferably in the first 8 weeks) . Obviously a cultural shift would be required, one which is morally obligatory, but is probably not going to happen. Sort of like a lot of other things like getting the chinese to stop eating endangered species.

The difficulty is the very one you cited earlier: consent. There are people who would very much like to have children, for whom this is an essential part of their being, it is a big deal. There are probably people who would give up, for example, an arm in exchange for the chance to have a child. Mandatory abortions deprive them of this thing that they value highly, at a minimum for years and possibly permanently in low-fertility cases.

So unless you do utilitarianism in a system that is totally indifferent to preferences... I have to say that an abortion contains a significant utilitarian negative. Not necessarily a net-negative, but there's a negative term in the equation.

In cases where the countervailing net-positive is small (since a Tay-Sachs carrier, as distinct from someone with the disease, can have a perfectly happy and functional life), that's an important factor that you're leaving out.

[Alyrium Denryle]

The fact that 50X things happen in a given period of time do not mean it is ethical to do X.

That is not my claim. I was countering the claim that somehow aborting that many fetuses would leave the world bereft of children.

The difficulty is the very one you cited earlier: consent. There are people who would very much like to have children, for whom this is an essential part of their being, it is a big deal. There are probably people who would give up, for example, an arm in exchange for the chance to have a child. Mandatory abortions deprive them of this thing that they value highly, at a minimum for years and possibly permanently in low-fertility cases.

That is why in low fertility cases you use IVF and pre-implatation diagnostics. If you harvest 8 embryos and 2 are positive for tay sachs, you can still attempt to implant 2 batches of 3.

I would need to look into the reduced ability to have kids with different sorts of abortion to evaluate the chances.

Keep in mind, I also support gov subsidized IVF for high risk individuals.


In cases where the countervailing net-positive is small (since a Tay-Sachs carrier, as distinct from someone with the disease, can have a perfectly happy and functional life), that's an important factor that you're leaving out.

14,560,000 abortions over 26 years to forever get rid of Tay Sachs. Compared to... 1,040,000,000 regular non-tay sachs abortions over that same time period.

The fact that 50X things happen in a given period of time do not mean it is ethical to do X. In this case, the real heart of the problem is the forced abortion of Tay-Sachs carrying fetuses, when we know perfectly well that a Tay-Sachs carrier can lead a happy life with no adverse consequences whatsoever, except for the small risk of the suffering of having a baby who expresses Tay-Sachs disease if they are unlucky and have children with another carrier.

I fail to see the problem with the abortion numbers. A fetus has Zero value. The only problem I am seeing is the significant negative utility involved with forcing them (yeah...forcibly aborting someone's second trimester fetus is bad... which is what a medical abortion rather than surgical is for, which is why I LOVE first trimester genetic diagnostics, preferably in the first 8 weeks) . Obviously a cultural shift would be required, one which is morally obligatory, but is probably not going to happen. Sort of like a lot of other things like getting the chinese to stop eating endangered species.

The difficulty is the very one you cited earlier: consent. There are people who would very much like to have children, for whom this is an essential part of their being, it is a big deal. There are probably people who would give up, for example, an arm in exchange for the chance to have a child. Mandatory abortions deprive them of this thing that they value highly, at a minimum for years and possibly permanently in low-fertility cases.

So unless you do utilitarianism in a system that is totally indifferent to preferences... I have to say that an abortion contains a significant utilitarian negative. Not necessarily a net-negative, but there's a negative term in the equation.

In cases where the countervailing net-positive is small (since a Tay-Sachs carrier, as distinct from someone with the disease, can have a perfectly happy and functional life), that's an important factor that you're leaving out.

The future pleasant life of a non-extant entity is a non-starter. Infinite number of possible people with every sex act, remember? The preference of the mother to not abort, and the suffering forcing it would cause is the only negative utility value. Screening the parents prior to mating would allow them to choose IVF at gov subsidy under a system I would prefer.

[Simon_Jester]

The fact that 50X things happen in a given period of time do not mean it is ethical to do X.

That is not my claim. I was countering the claim that somehow aborting that many fetuses would leave the world bereft of children.

You missed the point, then. If you did it for Tay-Sachs that wouldn't happen. Do it for each of several dozen possible lethal genetic diseases, on the other hand, and you have more of a problem.

The difficulty is the very one you cited earlier: consent. There are people who would very much like to have children, for whom this is an essential part of their being, it is a big deal. There are probably people who would give up, for example, an arm in exchange for the chance to have a child. Mandatory abortions deprive them of this thing that they value highly, at a minimum for years and possibly permanently in low-fertility cases.

That is why in low fertility cases you use IVF and pre-implatation diagnostics. If you harvest 8 embryos and 2 are positive for tay sachs, you can still attempt to implant 2 batches of 3.

I would need to look into the reduced ability to have kids with different sorts of abortion to evaluate the chances.

Keep in mind, I also support gov subsidized IVF for high risk individuals.

That still doesn't address the consent issue. Which is supposed to be important here, remember? Isn't recognizing the idea of patient consent supposed to be one of the main differences between the bad old days of eugenics and the bright new future? You were citing it as such earlier today.

In cases where the countervailing net-positive is small (since a Tay-Sachs carrier, as distinct from someone with the disease, can have a perfectly happy and functional life), that's an important factor that you're leaving out.

The future pleasant life of a non-extant entity is a non-starter. Infinite number of possible people with every sex act, remember? The preference of the mother to not abort, and the suffering forcing it would cause is the only negative utility value. Screening the parents prior to mating would allow them to choose IVF at gov subsidy under a system I would prefer.

Thing is, you declare it to be a utilitarian negative if a baby is born with a lethal genetic disorder. That I can understand... but it undermines the argument you just made: the existence of a person with a lethal genetic disorder cannot be a utilitarian negative, and cannot be a reason for action of any kind, if that person does not yet exist.

You also declare it to be a utilitarian negative if a baby is born carrying a gene that can cause a lethal genetic disorder. That's where you're on very shaky ground. Because at that point, no harm is caused by allowing such a person to exist.

To eradicate the genes for conditions like this from the general population, you're going to wind up in the position of taking hundreds of thousands or millions of people aside and effectively saying "you are not allowed to have children because those children, while healthy, would carry genes that might cross with other people who have the same gene and cause a lethal illness." At which point you're violating the extremely strong preferences of a huge number of people- in many cases, preferences on the same level of importance to them as "I would like to keep all my arms and legs."

And you're doing this to avert very small scale suffering: the incidence rate of genetic illnesses like Tay-Sachs is low, especially in the general population.

That's why I call into question whether you've sat down and done the math properly. Because you're proposing to violate the extremely strong preferences of a huge number of people, to put them in a position where they will feel they have been harmed even if you do not grasp how or why... to avert potential suffering that is petty in comparison.

I could understand if you advocated forced abortions for fetuses that will actually express the disease, with the double-recessive. Or screening to identify couples where both partners carry the recessive. But to abort every fetus carrying the recessive gene on account of the potential consequences of that gene crossing with another rare copy of same? For, realistically, many diseases, because Tay-Sachs isn't the only one involved here?

That is going much too far, and you ought to realize it.

[Terralthra]

I could understand if you advocated forced abortions for fetuses that will actually express the disease, with the double-recessive. Or screening to identify couples where both partners carry the recessive. But to abort every fetus carrying the recessive gene on account of the potential consequences of that gene crossing with another rare copy of same? For, realistically, many diseases, because Tay-Sachs isn't the only one involved here?

That is going much too far, and you ought to realize it.

Um, what? I may have missed something, but Alyrium didn't advocate aborting carriers. He said that carriers shouldn't be allowed to reproduce with each other.

[Simon_Jester]

Um, what? I may have missed something, but Alyrium didn't advocate aborting carriers. He said that carriers shouldn't be allowed to reproduce with each other.

I think you missed something.

It requires a very specific cultural context for that, frankly. Tay Sachs has been in jewish populations for a long time, and they all know the Horror that brings. The problem is long term, namely their marriage practices just lead to a proliferation of Tay Sachs carriers that will eventually reverse all their good work. You want selection to act, whether artificial or natural. With assortative mating, the carriers hide the Tay Sachs recessive lethal from selection. In population terms, it would have been better for them to allow random mating to take place with respect to that locus, then the gene would be gone in 12 generations. If you want to have your cake and also eat it, you can remove carriers from the gene pool in 1 generation. To do that though, you have to mandate that the fetuses themselves be screened and carriers removed as well as infected. You may be able to get Ashkenazim to agree to that...

Are you even aware of the carrier rate of TS in the general population? It's one in 250. That means to eliminate ALL carriers of TS you have to abort one in every 250 babies conceived for an entire generation. How many millions will that be? Have you not slid down the slippery slope into a pile of millions abortions just there?

Considering that the miscarriage rate for known pregnancies is 20% or so, and the abortion rate in the US is 22.6%. 1 in 250 is a drop in the abortion bucket. You change 22.6% to 22.64%. Oh the horrors. If you consider a generation to be approximately 25 years (defined as the mean age of reproduction) you end up with a total of ~400 thousand abortions to get rid of Tay Sach--Forever. In the US anyway. Here, let me give you world stats!

14,560,000 abortions over 26 years to forever get rid of Tay Sachs. Compared to... 1,040,000,000 regular non-tay sachs abortions over that same time period.

[Alyrium Denryle]

You missed the point, then. If you did it for Tay-Sachs that wouldn't happen. Do it for each of several dozen possible lethal genetic diseases, on the other hand, and you have more of a problem.

I calculated it for CF which is many times more prevalent and also treatable.

That still doesn't address the consent issue. Which is supposed to be important here, remember? Isn't recognizing the idea of patient consent supposed to be one of the main differences between the bad old days of eugenics and the bright new future? You were citing it as such earlier today.

It is. Which is why every effort should be made to prevent force and find work-arounds when necessary. The problem is you have to balance the "rights" of patients against those who they would bring into the world to not suffer. What about people who oppose abortion completely? Who think it is Gods Will (tm) that their child suffer?

Even if your goal is only to remove the disease condition and not the gene from the population through mandatory screening for having both copies of the gene that causes Tay Sachs, or a single copy of ALD (male fetuses only of course), how the hell do you deal with a patient who will willfully and with self-rightous indignation put a child through that hell?

The notion of informed consent is less about the consent and more about recognizing that a person is just that. A person, not property of the state, or an experimental subject to be used and abused in the name of progress. A child however, not a fetus, but a child, has "rights" as well. It is not a right to exist (if we accepted that we open the door for banning contraception and making engaging in every available mating opportunity mandatory), but once born they do have a right not to spend their short lives in agony and fear. Just as a patient has a right not to be used, so does a child.

Thing is, you declare it to be a utilitarian negative if a baby is born with a lethal genetic disorder. That I can understand... but it undermines the argument you just made: the existence of a person with a lethal genetic disorder cannot be a utilitarian negative, and cannot be a reason for action of any kind, if that person does not yet exist.

It does not work that way. There are an infinite number of possible healthy persons. The birth or non-birth of any one of them is inconsequential, if the birth had value in itself we would be obligated never to turn down heterosexual unprotected intercourse because if we did turn it down we would be denying a childs right to exist. The consequences of giving birth to a child who will develop ALD is not comparable to this. That child will live for maybe seven years, then spend the last two years of their lives until the age of nine or so in horrific pain suffering from slow and gradual neurodegeneration. There is no equivocation that can be made. If the child (any child) is to be born, we have obligations to it. If it is not, it has no value.

"you are not allowed to have children because those children, while healthy, would carry genes that might cross with other people who have the same gene and cause a lethal illness."

or you say "you are not allowed to have this particular child" the point is to eradicate the gene, not lineages of people.

Now, if you want to wait a few more generations, you can prevent screening of the parents (or make their at-birth screening private) and bring mating with respect to the gene random. You stop hiding the gene in the carriers and expose it to selection. In a few generations of selective abortion of double recessive fetuses the gene is gone. it just takes longer, and the prenatal screening is cheap as hell.

That's why I call into question whether you've sat down and done the math properly. Because you're proposing to violate the extremely strong preferences of a huge number of people, to put them in a position where they will feel they have been harmed even if you do not grasp how or why... to avert potential suffering that is petty in comparison.

As I said, I have not said they cant have kids at all, and I have already conceded that a cultural shift would need to occur to make sure that undue suffering does not occur. Again, chances are most people (as opposed to psycho fundies who dont care about kids once they are born) would abort if they knew their fetus had any of these conditions.

For, realistically, many diseases, because Tay-Sachs isn't the only one involved here?

Screening for many diseases is very very cheap.

That is going much too far, and you ought to realize it.

There are many ways of doing it, aborting carriers is just the fastest way of doing it. Done in one generation and you never have to worry about ANY of them again.

Or screening to identify couples where both partners carry the recessive. But to abort every fetus carrying the recessive gene on account of the potential consequences of that gene crossing with another rare copy of same?

That depends on the community. Your calculations of the number of Tay Sachs babies per century are based on random mating. Unless people are fish, mating is almost never random. In isolated communities like orthodox jews, the recessive carriers will eventually proliferate in their small population with the assortative mating scheme they have going, making it very difficult to find non-carriers to marry the carriers, after a latency period, Tay Sachs will skyrocket if the mating scheme fails (due to, you know... people falling in love). I will need to find my pop gen book to look up the equations to calculate how quickly the number of carriers having to have arranged marriages will become intractable. That is the problem with inbreeding depression.

Remember, population wide with random mating Tay Sachs is very rare. Among certain subpopulations it is not. Among that subpopulation you probably will not need to force anyone to abort. These subpopulations account for the vast majority of Tay Sachs cases. As a result the harm you cause by making such a thing mandatory is very very small. With other conditions such as ALD that are sex-linked, you dont have the probability game to worry about. 50% of a carriers children will die a horrible death in childhood or suffer severe disability as adults. The other 50% are normal. Almost no one will want that child born, nor will they want it as a scourge looming over their grandchildren. Same with Tay Sachs. Each of these diseases can be near eliminated from the population relative to what they are already (which is already low) without ever having to use force.

There is a greater loss of utility due to the discomfort cause by the screening.

That is going much too far, and you ought to realize it.

It may be. I will need to do some happy math and compile a list of diseases with their carrier frequencies. I am happy to only selectively abort infected fetuses and leave the decision to carriers to parents. All you need to do is reduce the fitness of carriers to eventually remove it, you dont need to eliminate in one generation.

Um, what? I may have missed something, but Alyrium didn't advocate aborting carriers. He said that carriers shouldn't be allowed to reproduce with each other.

I did and I didnt. I offered it (mostly) as a hypothetical if you wanted to be REALLY efficient. Again, all you need to do is stop the carriers from completely hiding the recessive trait, expose it to selection, and the recessive goes away, it will just take longer.

[LionElJonson]

Carriers typically have 50% of normal Hex-A. Infantile TS sufferers typically have 0. LOTS have 5-15% of Hex-A since birth and no, it doesn't decrease over time. What happens over time is a slow accumulation of gangliosides. The more Hex-A the slower the accumulation, so a LOTS sufferer with 15% of normal Hex-A production will experience symptoms later in life than a LOTS sufferer with only 5%.

There have been attempts to artificially replace the missing Hex-A as we replace missing insulin in diabetics. IF this could be achieved then it might be a valid treatment for the disorder that, if consistently applied, could avoid all damage resulting from the defective/missing enzymes, but so far no one has come up with an effective means to get Hex-A across the blood-brain barrier. If that could be done TS might go from a nearly always fatal condition to a chronic but treatable condition.

Couldn't they drill a hole in the skull and hook up a tube to inject the drug directly into the brain, with suitable valves to stop pathogens from getting in and causing infections?

[Broomstick]

I base that on the historical record of what happened last time sterializing people with genetic defects was popular.

Who said i would be sterilizing anyone? I said in a prior post that sterilization is not typically necessary.

Not typically necessary? Does that mean you do think it's necessary at times? And don't you realize that forcing some abortions (between 25-50% of pregnancies for some conditions) is a form of fertility reduction?

There is not such thing as a "perfect government"

You dont even need a perfect one. You need one that is sufficiently competent and non-corrupt to put in place the necessary safeguards to prevent Bad Shit (tm) from happening. Fat chance, I know.

Very well then - I don't believe there is such a thing as a government good enough to do this in a moral and ethical manner.

The problems you speak of are perfectly valid problems of implementation. I would never dream of pushing eugenics as the world is now. That does not however effect the rightness or wrongness of the practice.

Yes, it does. A practice that requires an impossibly high standard of correct conduct on part of the government is a wrong practice for the real world.

Being a carrier for a severe genetic disease may actually be an advantage in the right circumstances - sickle cell and malaria being the most well-known example.

Which is why I would not eliminate carriers.

Yes, you would. You stated you would eliminate Tay Sachs carriers.

I am also aware that the lives of the disabled are often perceived by the able-bodied to be more horrible than they actually. I am married to a man who, due to a birth defect, has spent almost every day of his life in pain, and you would use that as an argument that he should have never lived - but he vehemently disagrees with that position! He is the one doing the suffering, not you, and he judges life to be well worth living despite his hardships. He wants to live - and regards with horror the idea that anyone with his defect should be eliminated from existence. That's where your argument breaks down. I am not convinced how you value suffering in this context is properly weighted.

And I do not want to eliminate all defects. Just the really awful ones. is a person with disease X likely to live a happy and meaningful life? Yes? Awesome! No need to get rid of it.

The problem is that what one person finds entirely tolerable another does not. As an example - "locked in syndrome" strikes most people as horrific, to be in body that feels but has no voluntary motion other than blinking your eyes, but on another message board we have a member who in fact suffers from locked in syndrome (modern technology allows him t use a computer) and he has stated that he is content with his life and still finds it worth living. In the past much harm has been done to the disabled and/or ill by normal people making assumptions about their condition without even making the token effort to ask the people in question how they feel about the situation.

Because that has happened in the past, and because it still happens today, I really get leery about a committee of people deciding which genetic afflictions are intolerable for the sufferers and which aren't.

The issue has less to do with any harm done, and an improper weight to suffering put in place by the disabled.

Why do you assume the weighting on the part of the disabled is improper, and not that of the able-bodied?

They cognitively link the non-existance of people in their group with the non-existence of themselves. It is why a lot of deaf people get really pissed off about the existence of cochlear implants (barring those who are not candidates of course). They fear the destruction of their community to the extent that such exists because it implies something about the destruction of themselves. It is why gay people freak the fuck out when something comes along that might decrease the chances of a gay person being born such as certain prenatal hormone treatments. I feel it to, I just set those feelings aside.

But other people do NOT do that. Most of them do not. Do you not see that if person suffering from condition Y is told "Fetuses suffering from Y should be aborted to prevent suffering" that said person takes it as a judgement that they should have been aborted, that they are not worthy of life? That is a different issue than cochlear implants, which aim to correct a perceived defect, although the issue is related.

My husband did NOT consent to being sterilized as a young boy. Neither did his parents - it was done ENTIRLEY without the knowledge of either him or his family.

And I was supposed to know this from your rather cryptic statement how exactly?

I realized that it wasn't sufficiently clear, which is why I went into more detail.

I assumed that you or your husband had a defect that you chose not to pass on that later turned out to not to have a genetic cause, and you being older are no longer able to really have healthy kids.

That having been said, what happened to your husband was monstrous. When was he born by chance? What that doctor did should have been fairly illegal after the 60s or so.

Yes, it was monstrous. And it was done by well-meaning, kind, intelligent people! People who had the "best interests" of children and the community uppermost in their mind. And yet they did a monstrous thing. That is my point - that this really is a situation where the slippery slope not only CAN occur, it HAS occurred! That's what nice people did (not Nazis!) The moral and ethical people of the time.

And it was known at the time that spina bifida was NOT genetic, NOT hereditary (except to the extent poverty and malnutrition can be inherited culturally rather than genetically) and yet they still did this thing! At the same point in time everyone with epilepsy was routinely sterialized in some states, some in infancy, even though it was known at the time that not all epilepsy had a hereditary component!

(And yes, he was born in the 1950's. Those laws were still on the books in many places until the early 1970's)

Except that by the time you get to amniocentisis and chorionic villi sampling it's too late for a chemical abortion.

There are (and in the future will be) other tests that can be done much earlier. Fetal Cells in Maternal Blood for example is one under development. Transcervical retrival of fetal propoblast cells is also done. Technology in this regard continues to increase. They are also a hell of a lot technically easier than gene therapy.

But those tests are not widely availble right now, so for many they effectivley don't exist.

It is, nonetheless, a historical fact - the Nazis started with the handicapped and moved on to slaughtering millions in the name of perfecting the human race. It is entirely relevant to the topic at hand.

Only if you assume that any attempt to remove lethal genetic conditions from the population is equivalent to a fanatical and twisted notion of "perfection".

As noted, this is a situation where the slippery slope has occurred. The Nazis were the most pernicious manifestation of it, but what happened even in "enlightened" nations post-Nuremburg when a lot of medical ethics, informed consent, and discrediting of eugenic abuses was put into play was appalling by today's standards.

It requires a very specific cultural context for that, frankly. Tay Sachs has been in jewish populations for a long time, and they all know the Horror that brings.

Please be specific - this is not a disease of Jews in general but of a subset of Jews, the Ashkenazim. Sephardic Jews, for example, have the normal 1 in 250 carrier rate of the human race in general.

The problem is long term, namely their marriage practices just lead to a proliferation of Tay Sachs carriers that will eventually reverse all their good work. You want selection to act, whether artificial or natural. With assortative mating, the carriers hide the Tay Sachs recessive lethal from selection.

Carriers only pass on the TS gene to 50% of their offspring. If they only marry non-carriers then the gene should never be more common than 50% of the population, the community NEVER becomes all carriers. In fact, since some people make the effort to find out their status and elect to not reproduce the trait is being slowly eliminated without a need for coercion.

In population terms, it would have been better for them to allow random mating to take place with respect to that locus, then the gene would be gone in 12 generations. If you want to have your cake and also eat it, you can remove carriers from the gene pool in 1 generation. To do that though, you have to mandate that the fetuses themselves be screened and carriers removed as well as infected.

It still won't work, as some cases of TS are the result of spontaneous mutations in the population. There will ALWAYS be cases of TS popping up from time to time.

You may be able to get Ashkenazim to agree to that.

1 in 27 Ashkenazim is a carrier. Within living memory they were the target of a genocidal campaign that killed 6 million Jews, including a majority of the Ashkenazim in Europe at the time. Any attempt to use coercion will be perceived as genocide. No, you will not get them to agree to mandatory elimination of 1 in 27 pregnancies. You are ignoring human psychology here, which is quite relevant to the question of obtaining cooperation.

The Ashkenazim, through voluntary cooperation, have virtually elminated the birth of actual TS sufferers in their community. Leave them alone. Now that carriers are easily identified and the communities at high risk know about the tests, the vast majority of people Tay Sachs are now in the general population, not the high risk communities.

I fail to see the problem with the abortion numbers. A fetus has Zero value.

Incorrect. A fetus has zero value TO YOU. To most other people in the world, those who desire children, a fetus DOES have value. Have you never known a woman who miscarried a wanted child? It can be devastating, it's always hard on the parent(s), and the normal reaciton is a period of mourning.

The only problem I am seeing is the significant negative utility involved with forcing them (yeah...forcibly aborting someone's second trimester fetus is bad... which is what a medical abortion rather than surgical is for, which is why I LOVE first trimester genetic diagnostics, preferably in the first 8 weeks).

The problem is, a woman might not even know she is pregnant until 8-12 weeks have passed. If she doesn't even know she is pregnant until 8 weeks have passed then it sort of throws a wrench in the works as far as aborting a defective fetus early, doesn't it?

Obviously a cultural shift would be required, one which is morally obligatory, but is probably not going to happen. Sort of like a lot of other things like getting the chinese to stop eating endangered species.

I think you'll get the Chinese to stop eating endangered species first - eating rare creatures is not evolutionarialy mandated. Having offspring is. Obviously, not all humans are compelled to reproduce, but most seem to care a great deal about it. If they didn't, it would be unlikely the species would exist given what a pain in the ass childbirth and infants are.

Yeah right - how about we have a committte of severely disabled people with veto power instead? Shouldn't it be cripples making decisions for cripples?

Um... who said I wanted to get rid of cripples? Why exactly are you building this particular strawman, drawing a swastika on it, and then setting it on fire?

In any case, I think you will have a hard time finding someone with a recessive, dominant (yeesh), or sex-linked lethal condition to put on the panel.

Why would that be the case? Not all lethal traits are immediately leathal. I sure you could find someone with Huntington's or LOTS or FOP to serve while they are physically and/or mentally able to do so.

That's for just ONE genetic disease - things like cystic fibrosis have just a high a carrier rate. Who will be left to continue the species?

Cystic fibrosis can be successfully treated (if you are rich...) and people with it can live meaningful lives. That disease is not on the List. If you want to put it on the list, fine...

But within my lifetime CF was a horrible disease that killed in childhood - I recall when the average life expectancy was 5-7 years, not 30-40. As medical science advances and treatments for a disease are developed what used to be certain early death becomes a chronic but treatable condition.

Frankly, our population could use a few hundred million more abortions just to get our population growth under control (now I am just being ghoulish and exercising dark humor, pay me no mind)

While I agree that a population half or 1/4 of our current one would be far better for both humanity and the world at large, I don't think this is a feasible means to get to that point.

$901,041,666.66 annually. Our government has lost as in misplaced, more than that in Iraq. In fact, we could pay for this for ten years just on the money lost there.

Granted, this is for 31 different Single Nucleotide Polymorphisms that can be used as markers using techniques that are 4 years old. This also does not take into account the abortions, just the screening. I will need to look at the number of specific mutations that cause something like Tay Sachs or ALD. A standard battery of 25 SNPs is used to screen for CF though.

There are at least 100 Hex-A mutations identified, which is the group for TS. Apparently we're finding more and more of these genetic disease are caused by more than one mutation.

In any case, the screening is itself inherently valuable, and well worth that monetary cost even if we only give the mother the option of abortion rather than mandating it.

This I agree with.

But I trust you to be a good utilitarian, Alyrium. So I think you'll agree with me when I say that if we're doing this on utilitarian grounds, I have to say that getting rid of Tay-Sachs in the general population this way is effectively out of the question.

The fetus has zero utility itself.

Incorrect. To most of the human race a fetus does have value. Even for people who do not consider a fetus a full human being it still has value - that is why miscarriage makes people sad.

The problem is not the death of the fetus. It is the trauma and violation caused to the mother. I will be honest, I dont know how to weigh that. There is no way to mitigate the suffering and pain caused to everyone by a child being born with a lethal genotype. Everyone suffers. The pain of childbirth, the sadness, the pain for the child.

There is sadness and suffering even with healthy, normal children. Remember, life is messy. Children get sick, they get injured, sometimes healthy children become disabled through accident. There are no guarantees of happiness. Eliminating children with bad genes does not make everything better forever.

I don't think (personal opinion) you are weighting suffering properly in regards to this question.

[Broomstick]

There are many ways of doing it, aborting carriers is just the fastest way of doing it. Done in one generation and you never have to worry about ANY of them again.

Incorrect. Spontaneous mutations will continue to occur. In fact, these days we can even identify when this happens, when, for example, a child is born with a genetic disease but neither parent is a carrier. You can not stop this. Diseases such as TS may become very rare but they will never go away completely.

Or screening to identify couples where both partners carry the recessive. But to abort every fetus carrying the recessive gene on account of the potential consequences of that gene crossing with another rare copy of same?

That depends on the community. Your calculations of the number of Tay Sachs babies per century are based on random mating. Unless people are fish, mating is almost never random.

Nonetheless, his estimate of 12 TS births a year in North America is very close to the 10 that are typically reported in the average year. So the real world apparently backs up his estimates.

In isolated communities like orthodox jews, the recessive carriers will eventually proliferate in their small population with the assortative mating scheme they have going, making it very difficult to find non-carriers to marry the carriers, after a latency period, Tay Sachs will skyrocket if the mating scheme fails (due to, you know... people falling in love).

Of course, you're ignoring the fact that the Ashkenazim have never been completely isolated - there have always been a certain number of people moving into and out of the community.

I will need to find my pop gen book to look up the equations to calculate how quickly the number of carriers having to have arranged marriages will become intractable. That is the problem with inbreeding depression.

In the communities in question ALL marriages are arranged, not just those for carriers.

Remember, population wide with random mating Tay Sachs is very rare. Among certain subpopulations it is not. Among that subpopulation you probably will not need to force anyone to abort. These subpopulations account for the vast majority of Tay Sachs cases.

Not anymore - As a pointed out, in recent years (21st Century) there have been years when NO TS children have been born in high-risk communities. The overwhelming majority of children with TS these days are born to low-risk parents! That's because the general population isn't screened for it so those 1 in 250 carriers aren't aware they are carriers. And, indeed, we're seeing about the number of TS children that statistics say should occur with 1 in 250 people as carriers.

[Broomstick]

Carriers typically have 50% of normal Hex-A. Infantile TS sufferers typically have 0. LOTS have 5-15% of Hex-A since birth and no, it doesn't decrease over time. What happens over time is a slow accumulation of gangliosides. The more Hex-A the slower the accumulation, so a LOTS sufferer with 15% of normal Hex-A production will experience symptoms later in life than a LOTS sufferer with only 5%.

There have been attempts to artificially replace the missing Hex-A as we replace missing insulin in diabetics. IF this could be achieved then it might be a valid treatment for the disorder that, if consistently applied, could avoid all damage resulting from the defective/missing enzymes, but so far no one has come up with an effective means to get Hex-A across the blood-brain barrier. If that could be done TS might go from a nearly always fatal condition to a chronic but treatable condition.

Couldn't they drill a hole in the skull and hook up a tube to inject the drug directly into the brain, with suitable valves to stop pathogens from getting in and causing infections?

Short answer - not with current technology. In theory that should work, but there are significant obstacles in making that work in practice.

[LionElJonson]

Carriers typically have 50% of normal Hex-A. Infantile TS sufferers typically have 0. LOTS have 5-15% of Hex-A since birth and no, it doesn't decrease over time. What happens over time is a slow accumulation of gangliosides. The more Hex-A the slower the accumulation, so a LOTS sufferer with 15% of normal Hex-A production will experience symptoms later in life than a LOTS sufferer with only 5%.

There have been attempts to artificially replace the missing Hex-A as we replace missing insulin in diabetics. IF this could be achieved then it might be a valid treatment for the disorder that, if consistently applied, could avoid all damage resulting from the defective/missing enzymes, but so far no one has come up with an effective means to get Hex-A across the blood-brain barrier. If that could be done TS might go from a nearly always fatal condition to a chronic but treatable condition.

Couldn't they drill a hole in the skull and hook up a tube to inject the drug directly into the brain, with suitable valves to stop pathogens from getting in and causing infections?

Short answer - not with current technology. In theory that should work, but there are significant obstacles in making that work in practice.

Really? I remember reading a paper from the seventies where an unethical psychology researcher stuck a some tubes and electrodes into the head of a retarded woman, and dosed her with chemicals to make her orgasm while using the electrodes to take readings of the resulting brain signals. He also did something similar to a gay man that was in there, and managed to turn him at least partially bisexual by combining it with heterosexual porn.

Is the problem with the Hex-A not being distributed across the brain properly if administered in this fashion?

[Broomstick]

Listen, you moron, that electrode into the head of a retarded woman stunt was done to someone unable to provide informed consent. She was chosen, bluntly, because she was viewed as expendable. That is exactly the sort of experimenting we don't want to see again.

Yes, doctors DO occasionally implant objects into the skull of a patient that allows them access to the brain. It is done on a temporary basis, for things like head injuries to monitor the pressure within the brain. Such patients are kept in a clean setting to prevent infection - to do this to someone with TS would essentially imprison them for the rest of their lives. Well, maybe some would tolerate that for having a life, but such devices can enormously increased risk of infection which, once it gets into the brain or spinal fluid, can quickly become catastrophic.

Even devices such as cochlear implants which do not fully penetrate the skull carry an increased risk of meningitis

Devices such as a cerebral-spinal fluid shunt, which remain entirely within the body and thus are not exposed to external risk of infection, still often lead to infection over a lifetime. They fail on a regular basis. They are a significant risk of both further brain damage and increased risk of death.

That is just to get a delivery device in there. Granted, given the drastically shortened life expectancy of TS that might justify the risk, but it is a real risk that will make doctors reluctant to do this unless there is also a clear benefit to the procedure.

It's not a matter of squirting Hex-A into once location. It needs to be distributed throughout the brain, and that is also an obstacle. Naturally produced Hex-A is present throughout the body. Artificially applied... diffusion will not do the job. There needs to be some way to circulate it into every nook and cranny. With diabetes and insulin the circulatory system and heart takes care of the job, but then, insulin is produced in one organ and distributed through the body. Naturally occurring Hex-A apparently is not centrally produced but rather made in a distributed manner. ON top of that, there circulation of the cerebral spinal fluid is different than that of blood distribution.

In sum, there is NOT a good way to get the Hex-A where it is needed - that is, throughout the central nervous system, not just in one location. Experimenting raises the problem that most TS sufferers are far too young to give consent to such a thing, and experimenting on children is almost always barred for ethical reasons. Thus, what experimentation along these lines is occurring must happen in adult TS sufferers, the rare LOTS cases, and it has to happen among those who are capable of giving consent, and of those, the small subset willing to be experimental subjects and risk either further disability from brain infections or an even earlier death than their disease would bring.

Is there any part of the problem that is still unclear to you?

[LionElJonson]

Listen, you moron, that electrode into the head of a retarded woman stunt was done to someone unable to provide informed consent. She was chosen, bluntly, because she was viewed as expendable. That is exactly the sort of experimenting we don't want to see again.

No duh. I called him unethical for a reason, mate.

Yes, doctors DO occasionally implant objects into the skull of a patient that allows them access to the brain. It is done on a temporary basis, for things like head injuries to monitor the pressure within the brain. Such patients are kept in a clean setting to prevent infection - to do this to someone with TS would essentially imprison them for the rest of their lives. Well, maybe some would tolerate that for having a life, but such devices can enormously increased risk of infection which, once it gets into the brain or spinal fluid, can quickly become catastrophic.

Even devices such as cochlear implants which do not fully penetrate the skull carry an increased risk of meningitis

Devices such as a cerebral-spinal fluid shunt, which remain entirely within the body and thus are not exposed to external risk of infection, still often lead to infection over a lifetime. They fail on a regular basis. They are a significant risk of both further brain damage and increased risk of death.

How can you increase a death rate of 100%?

That is just to get a delivery device in there. Granted, given the drastically shortened life expectancy of TS that might justify the risk, but it is a real risk that will make doctors reluctant to do this unless there is also a clear benefit to the procedure.

Possibly reducing the chance of horrible painful death is probably one benefit. Even a 99% chance of horrible painful death is an improvement over a 100% chance of a different horrible painful death.

It's not a matter of squirting Hex-A into once location. It needs to be distributed throughout the brain, and that is also an obstacle. Naturally produced Hex-A is present throughout the body. Artificially applied... diffusion will not do the job. There needs to be some way to circulate it into every nook and cranny. With diabetes and insulin the circulatory system and heart takes care of the job, but then, insulin is produced in one organ and distributed through the body. Naturally occurring Hex-A apparently is not centrally produced but rather made in a distributed manner. ON top of that, there circulation of the cerebral spinal fluid is different than that of blood distribution.

In sum, there is NOT a good way to get the Hex-A where it is needed - that is, throughout the central nervous system, not just in one location.

Fair enough; I suspected something like this was the case, anyway.

Experimenting raises the problem that most TS sufferers are far too young to give consent to such a thing, and experimenting on children is almost always barred for ethical reasons. Thus, what experimentation along these lines is occurring must happen in adult TS sufferers, the rare LOTS cases, and it has to happen among those who are capable of giving consent, and of those, the small subset willing to be experimental subjects and risk either further disability from brain infections or an even earlier death than their disease would bring.

Parents can give consent, can't they?

Is there any part of the problem that is still unclear to you?

Not particularly.

[Serafina]

How can you increase a death rate of 100%?

I'm not going to get into the rest of the discussion - but the answer to this should really be obvious:
You can decrease their lifespan. Your treatment can kill them now or in five years, instead of the 10 years (or whatever) that they would have without it. If that's the case, it's a BAD thing.

Really, this should be obvious to anyone.

[Broomstick]

How can you increase a death rate of 100%?

Serafina answered this quite ably

Parents can give consent, can't they?

I do not feel like explaining this ethical minefield to LionElMoron - someone else can take this one.

[HMS Conqueror]

One problem is that parent-child incest, by it's very nature, ALWAYS has the issue of age difference and power dynamics at play. Which might be way there is slightly more tolerance for sibling incest than parent-child incest.

Not really an incest issue. A family friend could easily have similar influence over young adult, and equally a brother and sister living independently wouldn't necessarily have any power-advantage. Even age isn't necessarily indicative: who is stronger, on average, a 20 year old man, or a 50 year old man? Or a 20 year old man, or a 50 year old woman? So while you might be right that some sort of 'undue influence' can constitute rape, that doesn't lead to outlawing incest.

[LionElJonson]

Parents can give consent, can't they?

I do not feel like explaining this ethical minefield to LionElMoron - someone else can take this one.

Uhh... how is it an ethical minefield? Parents are always required to give consent for medical procedures their children undergo; how is this any different?

[Broomstick]

Parents do not have unlimited ability to give consent. There are limits. Which is why sometimes the courts step in and appoint a non-related advocate for the child in question.

[Alyrium Denryle]

Parents can give consent, can't they?

I do not feel like explaining this ethical minefield to LionElMoron - someone else can take this one.

Uhh... how is it an ethical minefield? Parents are always required to give consent for medical procedures their children undergo; how is this any different?

There are these things called Institutional Review Boards and Bioethics Committees for a reason.