Ethics of Forced Sterilization to Eliminate Genetic Diseases

[amigocabal]

Several deadly genetic diseases, such as Tay Sachs and cystic fibrosis, can be traced to a single recessive gene. If everyone with such genes were forcibly sterilized, those diseases could become extinct in a generation.

What are the ethics of using forced sterilization to eliminate Tay Sachs and cystic fibrosis?

[Eternal_Freedom]

Pretty damn dark. For one, forced anything is unethical, and forced sterilisation especially smacks of Nazi eugenics. Even if you coudl construct a sound ethical defence of the idea, it woudl most likely fail the public opinion test.

[Losonti Tokash]

You may run into some resistance arguing for the "gentle" genocide of Ashkenazi Jews, Cajuns, and French Canadians.

[Hamstray]

old news: genes linked to cystic fibrosis are also linked to malaria and typhoid resistances and whatnot.

http://www.nih.gov/news/pr/may98/niaid-06.htm
http://news.harvard.edu/gazette/1998/07 ... osisG.html
...

[amigocabal]

Pretty damn dark. For one, forced anything is unethical, and forced sterilisation especially smacks of Nazi eugenics. Even if you coudl construct a sound ethical defence of the idea, it woudl most likely fail the public opinion test.

True, but Nazi eugenics were based on superficial characteristics like hair color.

Few people would argue that cystic fibrosis or Tay Sachs disease are superficial.

[Lagmonster]

I have a love/hate relationship with the "right to have children". It's a right you don't want to have taken away, but it's clearly a colossal mistake for some people to have children. If a person has a painful disease and is warned that having kids will almost certainly give the disease to the kid, and they do it anyway, have they endangered the kid? My gut says yes.

I figure that it should at least be socially shameful to have kids against good medical advice regarding health risks to the child. And I have no problem with subsidizing - within reason - egg or sperm donors, IVF or similar treatments. Or better yet, a fast track and grant to get on and pay for adoptions. There are a lot of paths to parenthood that don't involve getting all snobby about your genes.

[Eternal_Freedom]

Pretty damn dark. For one, forced anything is unethical, and forced sterilisation especially smacks of Nazi eugenics. Even if you coudl construct a sound ethical defence of the idea, it woudl most likely fail the public opinion test.

True, but Nazi eugenics were based on superficial characteristics like hair color.

Few people would argue that cystic fibrosis or Tay Sachs disease are superficial.

Perhaps, but I would like to see your response to the rest of my post. Besides, whilst forced sterilization in cases of severe genetic diesease may not be what the Nazis did, it sounds similar enough to start ringing alarm bells in people's heads.

[Losonti Tokash]

I think Lagmonster's got the better idea here. I don't like the idea of forced sterilization at all, but you could have a measure of success by rewarding desirable behaviors and making them easier. Stuff like genetic screening, egg/sperm donors lacking major genetic diseases, educating people on the risks they and their child will face, etc. I don't know about making adoption easier, because there are good reasons it's so intensive, but establishing standards and eliminating conidtions that many adoption agencies have which require you to be religious or attend church are good ideas.

[Alyrium Denryle]

Pretty damn dark. For one, forced anything is unethical, and forced sterilisation especially smacks of Nazi eugenics. Even if you coudl construct a sound ethical defence of the idea, it woudl most likely fail the public opinion test.

True, but Nazi eugenics were based on superficial characteristics like hair color.

Few people would argue that cystic fibrosis or Tay Sachs disease are superficial.

Are you fucking serious? I have played with the idea of forced sterilization as a thought exercise. I will admit to that. You know what the conclusion of that argument is? The conclusion was that once the door is opened to sterilizing people for things like Tay Sachs, it gets opened for other shit. The Nazis started out with birth defects and genetic diseases--they ended with superficial characteristics.

There is a better solution. A universal healthcare system that screens people at birth for lethal recessives and later in life offers them assisted reproduction and pre-implantation genetic diagnostics free of charge. Jews already have themselves screened and wont marry other carriers specifically because diseases like Tay Sachs are so horrendous. They will get on board voluntarily, there is no reason to forcibly sterilize anyone.

[Eternal_Freedom]

I think Lagmonster's got the better idea here. I don't like the idea of forced sterilization at all, but you could have a measure of success by rewarding desirable behaviors and making them easier. Stuff like genetic screening, egg/sperm donors lacking major genetic diseases, educating people on the risks they and their child will face, etc. I don't know about making adoption easier, because there are good reasons it's so intensive, but establishing standards and eliminating conidtions that many adoption agencies have which require you to be religious or attend church are good ideas.

Very much this. My opposition is not to the sterilization part, but rather to the forced part. Whilst I don't have a dangerous genetic diesease, I do have a genetic defect that might seriously effect my children, so it's kind of a sore spot for me.

Certainly, offering sterilization, educating people about the risks, offering incentives in the form of easier access to IVF to avoid passing the diesease on is a sensible idea. But forcing it on people? Hell no.

[whackadoodle]

Tay-Sachs - not just for Ashkenazim anymore.

PHILADELPHIA (CBS) – Tay-Sachs disease is widely known as a genetic disorder among Jews, but a new study is exploring the risk in another group: The Irish.

Genetic testing is routine for potential parents of Jewish descent to identify the risk for the rare but fatal disorder that often kills children before their 5th birthday.

But after three recent cases of Tay-Sachs turned up in the Irish population in the Philadelphia area, it got Einstein Medical Center’s director of clinical genetics Dr. Adele Schneider wondering.

“It raised the question to me, ‘What is the carrier rate for Tay-Sachs in the Irish population?’ because we always test Jewish people for it, and never test the Irish.”

Einstein is launching a program to screen 1,000 people of with at least three of four Irish grandparents, to try to quantify the risk for Tay-Sachs.

The free blood tests begin Wednesday in Philadelphia. Schneider says the screenings will expand to Boston and New York over the next two years.

[Scrib]

I have a love/hate relationship with the "right to have children". It's a right you don't want to have taken away, but it's clearly a colossal mistake for some people to have children. If a person has a painful disease and is warned that having kids will almost certainly give the disease to the kid, and they do it anyway, have they endangered the kid? My gut says yes.

I figure that it should at least be socially shameful to have kids against good medical advice regarding health risks to the child. And I have no problem with subsidizing - within reason - egg or sperm donors, IVF or similar treatments. Or better yet, a fast track and grant to get on and pay for adoptions. There are a lot of paths to parenthood that don't involve getting all snobby about your genes.

Yeah, but you see a lot of people doing just this. All those jokes about celebrities and African babies? All the crowing about the feeling as you hold your baby? I'm not sure how easily that will go away.

Unfortunately we're going to have to pay. I also don't think that the right everyone takes for granted is not for everyone but what the fuck are you going to do? I certainly don't like the idea of any body of government having that amount of power.

So the alternative is paying for screenings and free terminations and streamlined adoptions I guess. I'm fine with that. Anyone who feels the need to have kids without screening or after discovering that the kid has some sort of disease should be treated as if they had incestuous sex. It's basically the same situation.

[Simon_Jester]

In the developed world we're close enough to being able to gene-tinker our way out of this problem that saying "we should XYZ because we need some kind of eugenic hygeine, dammit!" seems premature. It'd be like reconfiguring our whole society along radical, painful new lines to minimize horse-dung production... in 1900. Sure, at the time horse dung in city streets was a major problem, but it was about to get so much better that doing something drastic and harsh to people would have seemed a terrible cruelty in hindsight.

I don't think we should add an incest-like stigma to people who already have the problem of their child being born with a genetic disease. Do we really want everyone looking funny at the parents who chose not to abort a boy who inherited his mother's hemophilia? Especially now that it's treatable? And in light of the fact that within one or two generations, the kid might be able to have genetic offspring who don't carry the gene, with no difficulty?

[Sea Skimmer]

Yeah now that the idea of altering specific bits of DNA to fix problems is on the table, rather then attempting to wipe out DNA enmass I don’t think you could argue force sterilization is a good idea even in an unethical context. All that DNA that's eliminated could hold all kinds of desirable traits we don't understand the wider implications of yet. Its not like such a plan would just sterilize a few thousand, in the US alone several million people would be targeted just for sickle-cell anaemia. This is not a good plan.

[Broomstick]

Several deadly genetic diseases, such as Tay Sachs and cystic fibrosis, can be traced to a single recessive gene. If everyone with such genes were forcibly sterilized, those diseases could become extinct in a generation.

You're proposing sterilizing the carriers? Not people with an actual genetic disease, but just those carrying undesirable recessive genes?

Do you have ANY idea how common such recessives are within the population?

Just targeting Tay Sachs carriers would mean forcibly sterilizing 1 in every 27 Ashkenazi Jews, 1 in every 27 French Canadians and Cajuns and possibly 1 in 50 of everyone of Irish descent.

For Cystic Fibrosis that's sterilizing 1 in every 25 Europeans and 1 in every 30 North Americans of European ancestry (do keep in mind that's everyone with a European ancestor at risk, not just "white people". Meaning black folks like the current PotUS could easily fall under that).

You are talking about tens of millions of people. For just those two diseases. Add in all the rest? Who will be left to reproduce? Bad recessive are common in the genome, most people in fact carry at least one. At the very least you are talking about forcibly sterilizing the majority of the human race. How the fuck do you expect to get their cooperation in this?

Not to mention the last time this was tried, back in the early 20th Century, the effect ranged from the relatively minor (though no less tragic to those involved) "problem" of sterilizing people who either did not carry/suffer from a particular disease, or whose problem was not genetic at all, thereby eliminating people with healthy genes from the gene pool, up to the wholesale slaughter of over ten million people the Nazis deemed undesirable (just a reminder: it wasn't just Jews they butchered).

In other words, are you fucking insane? Or just ignorant that that sort of thing has been tried before with hideous results?

Bad idea. Very bad idea. Forget the theoretical ethics, past experience shows this would end extremely badly.

[Broomstick]

Oh, and one more reason your scheme won't work - mutations do occur spontaneously with each generation. Even if we were draconian enough to sterilize all carrier of, say, Tay Sachs the disorder would simply reappear again when someone has a spontaneous mutation that recreates the gene. It would, of course, be much more rare in such a world but it would still exist. There are some genetic diseases that are dominant (meaning there are no carriers, if you have the gene you have the disease) that prevent reproduction, meaning each and every incidence is a result of spontaneous mutation. That such things exist show that this phenomena does occur, and will continue to occur.

In other words, you can't eliminate genetic disease unless you eliminate spontaneous mutations, and there is no way that we can do that.

[Feil]

Are you fucking serious? I have played with the idea of forced sterilization as a thought exercise. I will admit to that. You know what the conclusion of that argument is? The conclusion was that once the door is opened to sterilizing people for things like Tay Sachs, it gets opened for other shit. The Nazis started out with birth defects and genetic diseases--they ended with superficial characteristics.

I don't have a well-considered argument on the main topic, but your argument here is as specious as any other slippery slope argument. The use of force against undesirable behavior is a mainstay of civilization; so is the use of restraint in determining what sort of undesirable behavior is sufficiently harmful to warrant the use of force. We imprison murderers, but we don't imprison people who have bad fashion sense. We quarantine carriers of deadly infectious diseases, but we don't quarantine carriers of the common cold.

You need to either rigorously show that your slippery slope argument holds water, which I doubt, or make an argument against the specific issue at hand.

[Luke Skywalker]

For one, forced anything is unethical

What? So are taxes unethical too? What about public education?

[Eternal_Freedom]

For one, forced anything is unethical

What? So are taxes unethical too? What about public education?

Im sure there is someone who could make an arguement for that, but I concede it was a blanket statement. On taxes and public education I don't consider it forced but rather the consequences you accept by being a citizen.

Above all though, it was more of a gut reaction to the rather disturbing question, especially as such a policy woudl sterilise me.

[Luke Skywalker]

Im sure there is someone who could make an arguement for that, but I concede it was a blanket statement. On taxes and public education I don't consider it forced but rather the consequences you accept by being a citizen.

Above all though, it was more of a gut reaction to the rather disturbing question, especially as such a policy woudl sterilise me.

Fair enough. I'm not necessarily defending forced sterilization -- the only case where I might find it acceptable was in cases of very dangerous and contagious hereditary diseases. But "force is always wrong!" isn't a very strong argument.

[Broomstick]

We quarantine carriers of deadly infectious diseases, but we don't quarantine carriers of the common cold.

We normally ask for voluntary cooperation in quarantine before resorting to force, and most people will cooperate without coercion in the case of contagious diseases. Likewise, the experience of groups like dor yeshorim show that you can achieve very high degrees of cooperation in identifying carriers and preventing genetic disease without the need for coercion. This actually makes sense, as most parents prefer to maximize the health of their children. It also doesn't involve involuntary sterilization of anyone, which is a bonus for a variety of reasons such as cost and being ethically more acceptable to most people.

In other words, I question if there is any sort of need for coerced eugenics when people who are properly informed of the risks and for whom avoidance of passing on problems is either very low cost or free tend to do this of their own accord anyway.

You need to either rigorously show that your slippery slope argument holds water, which I doubt, or make an argument against the specific issue at hand.

As I stated, in the early 20th Century eugenics did, indeed, slide down the slippery slope from an initial position of "let's encourage the healthy to reproduce" through coerced sterilization and all the way down to "liquidate the defectives" in some parts of the world. That doesn't mean the second time around we'd slide down the slope but the fact it happened once before lends some credence to the fear that it could happen again.

[Scrib]

In the developed world we're close enough to being able to gene-tinker our way out of this problem that saying "we should XYZ because we need some kind of eugenic hygeine, dammit!" seems premature. It'd be like reconfiguring our whole society along radical, painful new lines to minimize horse-dung production... in 1900. Sure, at the time horse dung in city streets was a major problem, but it was about to get so much better that doing something drastic and harsh to people would have seemed a terrible cruelty in hindsight.

I don't think we should add an incest-like stigma to people who already have the problem of their child being born with a genetic disease. Do we really want everyone looking funny at the parents who chose not to abort a boy who inherited his mother's hemophilia? Especially now that it's treatable? And in light of the fact that within one or two generations, the kid might be able to have genetic offspring who don't carry the gene, with no difficulty?

Well, if you're right then we won't have to, and we'll escape without having to go to nasty (and possibly ineffective) lengths like forced sterilization.

But if we ever get to the point that someone can have a child free of such diseases and chooses not to...well fuck them.

[Broomstick]

Short of analyzing each and every conception that will never happen. As I stated upstream, a certain number of genetic diseases are a result of spontaneous mutation, which means the parents could both have healthy versions of a gene and because of random chance the kid could have a nasty mutation all on his/her own. In which case there was no way to predict the existence of the defect in advance.

Heck, there have probably been instances of otherwise identical twins where one had a genetic disease and the other didn't because the mutation occurred after the embryo split in two. It's certainly possible, even if the odds of it occurring in any particular case are spectacularly low.

[Darth Holbytlan]

Fair enough. I'm not necessarily defending forced sterilization -- the only case where I might find it acceptable was in cases of very dangerous and contagious hereditary diseases. But "force is always wrong!" isn't a very strong argument.

How exactly is a hereditary disease supposed to be contagious? Or is that just your weird way of saying that forced sterilization is always wrong?

[Ziggy Stardust]

How exactly is a hereditary disease supposed to be contagious? Or is that just your weird way of saying that forced sterilization is always wrong?

While there is no such thing as a contagious hereditary disease, there ARE genetic pre-dispositions towards carrying/contracting certain contagious diseases. Not sure if that was what he meant, though.