Up here at the top, I will reply to that... not a concession, I don't call it that, since nothing was or needed to be conceded. But I will reply to that clarification of intent. And then the rest:
FINALLY!Alyrium wrote: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.
However, I still find myself made very dubious about the entire proposal by this exchange. Because if you had been given the authority to do this, I find myself wondering whether you would have reached that compromise position, or whether you would have taken the "let us eliminate the scourge as fast as possible" tack. On how clear and well-placed your judgement calls about which diseases are a scourge it is worth aborting millions of pregnancies to avert are. And so on.
One of the big reasons consent is a huge issue is because of exactly this: even given an expert acting in good faith on medical issues, they cannot know all the issues affecting the patient, especially those involving the patient's own quality of life. Experts sitting at desks are prone to be much more casual with the lives and fertility of others than those same others would ever tolerate.
Sometimes that's because of their better position to be objective, perhaps. But I think more often it's simply because of psychological distance, and that is not the same thing as objectivity. Distance makes it much easier to proclaim on the fate of someone else, someone who is merely an abstract case of an abstract disease. Even with the best will in the world, that status lends itself to callous disregard for others. Not hostile or malevolent, just callous: thick-skinned, prone to dismiss suffering that ought to be dismissed.
For certain operations, I do not trust a human being at a desk to make broad, sweeping, highly general decisions about whether it is "worth" depriving others of lives or fertility.
So?Alyrium Denryle wrote:I calculated it for CF which is many times more prevalent and also treatable.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 problem here is fertility reduction due to systematic abortion of fetuses which carry genes for one or more of these lethal-recessive diseases. How many people are on that list? It's quite possible, for all I know, that if you add up every disease on your list, you're talking about a majority of people born in the world. In which case aborting that many fetuses would cause a population crash, as the birth rate plummeted.
How does this address the consent issue? Again, this is a colossal problem if you propose to abort all fetuses carrying the lethal recessive for a disease whether or not they express the disease itself. Because in that case the number of potential suffering children you are averting becomes much smaller.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?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.
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.
It's one thing to say "this specific fetus carries genes that will kill it horribly in childhood, we are aborting it." But you have to stretch the argument much farther, and stretch it thinner, if you say "this specific fetus carries genes that might cause its offspring to die horribly in childhood, with 1% probability, therefore we are aborting it."
The first case, I can understand how you justify by weighing the enormous utilitarian-negative of an agonizing death against the utilitarian negative of violating patient consent. I have deep misgivings, but I can at least comprehend the fucking argument.
But it is ludicrous and grotesque for you to go on as if the same argument works equally well for carriers as it does for those who express the disease. If you're willing to abort fetuses because of a 1% chance their children will die in agony, there can not and will never be a case where you're willing to not abort fetuses. If a 1% probability of a major utilitarian negative is enough to justify not permitting someone to have a child, then there will always be such a negative: the probability of bad things happening in a child's life is always going to be nonzero, simply by blind chance and factors that have nothing to do with genetics.
It approaches mathematical certainty that a randomly chosen person will have offspring that wind up suffering horribly with 1% or greater probability, whether they carry a genetic disease or not. Why is the added increment of probability due to a genetic disease (a consequence with probability on the order of 1 to 0.1% that MIGHT occur IF this person has children AND ONLY IF they have children with another carrier of the lethal recessive) suddenly enough to justify forced abortions?
Once again, I can see how this argument works for fetuses that actually have the disease. Do not use them as examples. I want to understand why (or, for that matter, whether) you advocate the same approach to carriers as you do for fetuses carrying the double recessive that will cause lethal disease.
You are letting the fact that you have found a solution to a problem blind you to the fact that the cost of the solution is grossly disproportionate to the cost of the problem.
There are three obvious holes in this argument to my eye.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.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.
The really critical hole is that you're assuming that the positive value of permitting a child to be born must be vastly positive, positive enough to trump any and all other concerns. This is not true. It might, instead, be merely positive enough to trump some concerns, but not others. Say, it might be too small to justify the known fact that the child will die horribly, while still being significant compared to the 1% chance that the child's child would die horribly.
Second, you fail to distinguish between a conception and a successful pregnancy. A utilitarian system that placed high value on all conceptions would indeed have perverse results. That would be silly. But, a conception having occured, if we're gong to start talking about the future state of the child who might exist as a consequence, things change. Now we're no longer talking about one of the infinite number of people who could conceivably exist. We are talking about one of a finite number of people who have some existent precursor form that does exist. We can place a (small) nonzero value on those finite number of precursor-forms, without placing a (large) nonzero value on the act of conception that would make conception mandatory.
Third and finally, there is (still) the question of how this ties into the rights of the mother. You do not get to monkey around with people willy-nilly, regardless of whether you place value on the effects of your actions. In particular you don't get to act this way towards the fetuses carried by pregnant mothers, even if you place zero value on fetuses because the mothers themselves do. They have invested considerable time and effort into bearing those fetuses, and fully intend to invest more both before and after birth. They will, quite often, strongly prefer to bear a child, to the point where they would make vast sacrifices to retain that opportunity.
You might be able to override that preference in cases where you can prove the child will die horribly. You do not get to override it casually or at will, as in cases where there is only a 0.1 to 1% chance of anything going wrong as a consequence.
I would have far more respect for your position if you seemed willing to admit that.
How is this state of affairs different from what we had in premodern times, when there was no way to screen the parents at all?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.
The cultural shift in question would have to completely remove the preference of pregnant women to have children. At which point we would probablyAs 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.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.
Pregnancy is, to put it mildly, inconvenient and dangerous. It is an inconvenience many women have been willing to put up with, even when it was far more dangerous, becuase they wanted to have children and paid the price accordingly. I submit that this is probably an instinctive preference, because if pregnant females of an intelligent species had no desire to have children at all, that species would vanish within a very short time.
As long as that preference exists, and as long as you propose to abort carriers, not just infants who express the disease, you will be violating an enormous number of women's preferences as patients in order to avert a small potential harm that might come about tas the consequence of the pregnancies.
And that will still be wrong.
You missed the point again. Here, I was not discussing the cost of screening. I was discussing the potential effect on society of aborting every fetus carrying a copy of any lethal recessive. There is more than one lethal recessive condition out there. How many fetuses would be left if you aborted all the carriers, not just the ones for Tay-Sachs?Screening for many diseases is very very cheap.For, realistically, many diseases, because Tay-Sachs isn't the only one involved here?
And until I can see you acknowledging the major, prohibitive ethical problems with doing that, I will not for a moment imagine that anyone can be trusted to do a forced-abortion-enforced eugenics program. Because I don't trust you, given the level of ethical insight you've shown in this conversation. And if I can't trust you I'm damn sure not going to trust a random person, even a random population geneticist.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.That is going much too far, and you ought to realize it.
What's the equation? I'd like to be able to do the math for the general population.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.
Specific breeding communities like the Ashkenazim may need different responses from the medical community. They already get one- the issue of Tay-Sachs is treated very differently among Ashkenazim than it is among the general population, because the disease is two order of magnitude more likely to crop up there: more like 0.1%, and less like 0.001%.
What about Tay Sachs in the general population, and other cases where the frequency of carriers is roughly 1%?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.