You, and me, and parent number three
February 24, 2014 10:23 AM Subscribe
FDA weighs risks of 3-person embryo fertilization, making "designer babies". This is explored with the goal of preventing mothers from passing on debilitating genetic diseases to their children. Daily Mail says 30 GM human babies have already been born in the United states. Half of them developed defects so the FDA stepped in.
I miss the good old days where designing your perfect baby meant subjecting yourself to the patriarchy and getting yourself knocked up after the prom by the rich, hunky quarterback.
posted by The 10th Regiment of Foot at 10:32 AM on February 24, 2014 [12 favorites]
posted by The 10th Regiment of Foot at 10:32 AM on February 24, 2014 [12 favorites]
Precautionary Principle vs. Proactionary Principle: GO!
posted by tybeet at 10:35 AM on February 24, 2014 [2 favorites]
posted by tybeet at 10:35 AM on February 24, 2014 [2 favorites]
Precautionary Principle vs. Proactionary Principle
AKA: "Somebody's got to protect us from these high voltage wires!" vs. "Goddamn big government Liberal nanny state!"
posted by The 10th Regiment of Foot at 10:38 AM on February 24, 2014 [1 favorite]
AKA: "Somebody's got to protect us from these high voltage wires!" vs. "Goddamn big government Liberal nanny state!"
posted by The 10th Regiment of Foot at 10:38 AM on February 24, 2014 [1 favorite]
Or perhaps the modified class vs the unmodified class, similar to Gattaca ... brb need sci-fi movie night.
posted by dabitch at 10:43 AM on February 24, 2014 [2 favorites]
posted by dabitch at 10:43 AM on February 24, 2014 [2 favorites]
Chocolate Pickle: a) because adoption is a difficult and potentially heartbreaking process; I have several acquaintances who have adopted, and the wait between meeting and beginning to fall in love with the child and final irrevocable parental rights was terrifying and agonizing and b) a lot of people really want to see in their children aspects of themselves and their parents and feel a long connection through history. And that's okay.
posted by tavella at 10:45 AM on February 24, 2014 [16 favorites]
posted by tavella at 10:45 AM on February 24, 2014 [16 favorites]
Chocolate Pickle: I'm not sure this is a technology I want the human race to have. The potential for abuse seems to me to far outweigh any possible benefits. If parents have "debilitating genetic diseases" and still want children, why can't they adopt?
What's so terrible about the concept of using mitochondrial DNA from a third parent? It's a totally different technology to genetic modification. Clearly there are some problems with the implementation, but if those could be worked out, I don't know why it should really scare anyone. Calling this 'three-parent conception' rather than 'genetic modification' or 'designer babies' is much more accurate, although maybe 'mitochondrial DNA donation' would be the most accurate simple designation.
posted by Mitrovarr at 10:49 AM on February 24, 2014 [11 favorites]
What's so terrible about the concept of using mitochondrial DNA from a third parent? It's a totally different technology to genetic modification. Clearly there are some problems with the implementation, but if those could be worked out, I don't know why it should really scare anyone. Calling this 'three-parent conception' rather than 'genetic modification' or 'designer babies' is much more accurate, although maybe 'mitochondrial DNA donation' would be the most accurate simple designation.
posted by Mitrovarr at 10:49 AM on February 24, 2014 [11 favorites]
well, I'm no scientist but this guy is: My concerns about Nature paper on Genome Transfer for mitochondrial disease
"In the hypothetical context of real-world assisted reproduction, moving one oocyte nucleus into the enucleated oocyte of another person could trigger all kinds of devastating problems (most likely through epigenetic changes) that might not manifest until you try to make a human being out of it."
posted by dabitch at 10:53 AM on February 24, 2014 [3 favorites]
"In the hypothetical context of real-world assisted reproduction, moving one oocyte nucleus into the enucleated oocyte of another person could trigger all kinds of devastating problems (most likely through epigenetic changes) that might not manifest until you try to make a human being out of it."
posted by dabitch at 10:53 AM on February 24, 2014 [3 favorites]
Ok, sure, there are eugenic overtones at first glance. But the idea that we will one day be able to remove these sorts of genetic diseases from the populace is still an absolute triumph of science similar to the destruction of smallpox.
So yes, this sort of technology should be regulated and monitored, but it's a long jump from "curing diseases" to "designer babies".
posted by tau_ceti at 10:53 AM on February 24, 2014 [1 favorite]
So yes, this sort of technology should be regulated and monitored, but it's a long jump from "curing diseases" to "designer babies".
posted by tau_ceti at 10:53 AM on February 24, 2014 [1 favorite]
The potential for abuse seems to me to far outweigh any possible benefits.
What potential is that?
If parents have "debilitating genetic diseases" and still want children, why can't they adopt?
Why should they be forced to?
posted by ROU_Xenophobe at 11:02 AM on February 24, 2014 [5 favorites]
What potential is that?
If parents have "debilitating genetic diseases" and still want children, why can't they adopt?
Why should they be forced to?
posted by ROU_Xenophobe at 11:02 AM on February 24, 2014 [5 favorites]
"An affected woman could adopt or use in vitro fertilization with another woman’s eggs. Of course, the resulting child would not be genetically related to her, but neither would the child be put at grave risk by an extreme procedure."
Pick a poison.
posted by dabitch at 11:05 AM on February 24, 2014
Pick a poison.
posted by dabitch at 11:05 AM on February 24, 2014
They did it because it wasn't illegal and they could.
Science is always one or two steps ahead of the law and something like this is inevitable. In the wrong hands, I foresee a slew of unintended bad consequences and untold misery.
posted by Renoroc at 11:08 AM on February 24, 2014 [2 favorites]
Science is always one or two steps ahead of the law and something like this is inevitable. In the wrong hands, I foresee a slew of unintended bad consequences and untold misery.
posted by Renoroc at 11:08 AM on February 24, 2014 [2 favorites]
Are we so short on people that we have to insure that every person who wants to can biologically reproduce? Is there a better way to go after inherited diseases that doesn't risk creating new human beings who may have to pay the price for our technological shortcomings down the road?
And doesn't "designer babies" mean manipulating for things like physical appearance or talent rather than just to be disease free? There's not much of a moral quandry for most people over the second one, but we do fret about the first one, even though we can't really do it yet.
Gattaca is not yet here, but you do have to wonder if the research is going in the most fruitful and ethical direction in this case.
posted by emjaybee at 11:33 AM on February 24, 2014 [1 favorite]
And doesn't "designer babies" mean manipulating for things like physical appearance or talent rather than just to be disease free? There's not much of a moral quandry for most people over the second one, but we do fret about the first one, even though we can't really do it yet.
Gattaca is not yet here, but you do have to wonder if the research is going in the most fruitful and ethical direction in this case.
posted by emjaybee at 11:33 AM on February 24, 2014 [1 favorite]
"Up and coming this season are the latest variations in MT-ND5 resulting in high quality dehydrogenase proteins, let me tell you many of the Immortals are considering this angle for their next mitochondrial re-populations..."
posted by bdc34 at 11:42 AM on February 24, 2014
posted by bdc34 at 11:42 AM on February 24, 2014
I'm just worried about the effect this will have on my dotage. Will I be stuck saying shit like "Kids these days are so perfect!" because that would really rankle.
posted by srboisvert at 11:50 AM on February 24, 2014 [8 favorites]
posted by srboisvert at 11:50 AM on February 24, 2014 [8 favorites]
Daily Fail eh? Rag.
posted by GallonOfAlan at 11:52 AM on February 24, 2014
posted by GallonOfAlan at 11:52 AM on February 24, 2014
I'm a carrier for PKU and have two children who have a mild form of PKU (though if my husband's mutation had been as bad as my own, they would have a severe form.)
Note two kids -- so we had the second one already knowing we were carriers and had a 1/4 chance of another (mildly) affected child.
PKU is not a mitochondrial disease, so this particular technology isn't directly relevant to my life.
But it's enough to give me a personal stake in questions about "Why should people who are affected by, or carriers for, genetic diseases get to reproduce?" And to me that question seems closely related to "Why should disabled people get to reproduce?" and "Why should stupid people get to reproduce?" -- to eugenics, in other words.
I think "designer babies" describes artificial breeding to eliminate certain diseases more than it describes techniques for allowing people affected by genetic mutations to have healthy children. Artificial selection is the traditional approach to genetic modification, after all, and the one which historical eugenicists actually favored.
There are no people who "shouldn't" reproduce, in my opinion. There may be people who don't choose to, because they understand the risks and costs to themselves and their future offspring (and my kids may be among that group, when they are old enough to understand maternal PKU syndrome -- but that will be their decision, what risks they want to try to manage.)
But if people do want to reproduce and science can help them do so while minimizing the risks/costs, then absolutely that is a valuable contribution to people's lives, and to the human condition in general.
The harder and more interesting question is whether these benefits are worth the risks to the people who will be affected by the research itself, to the generations who are at risk of defects or side effects as a result of imperfect understanding of the process in the early steps. But these are ethical questions associated with any kind of medical research with human subjects, and we have institutional review boards, etc, to address them on a case by case basis. So while this is a novel kind of human research, there have been related issues with other kinds of human research, and there are precedents and principals.
posted by OnceUponATime at 11:55 AM on February 24, 2014 [24 favorites]
Note two kids -- so we had the second one already knowing we were carriers and had a 1/4 chance of another (mildly) affected child.
PKU is not a mitochondrial disease, so this particular technology isn't directly relevant to my life.
But it's enough to give me a personal stake in questions about "Why should people who are affected by, or carriers for, genetic diseases get to reproduce?" And to me that question seems closely related to "Why should disabled people get to reproduce?" and "Why should stupid people get to reproduce?" -- to eugenics, in other words.
I think "designer babies" describes artificial breeding to eliminate certain diseases more than it describes techniques for allowing people affected by genetic mutations to have healthy children. Artificial selection is the traditional approach to genetic modification, after all, and the one which historical eugenicists actually favored.
There are no people who "shouldn't" reproduce, in my opinion. There may be people who don't choose to, because they understand the risks and costs to themselves and their future offspring (and my kids may be among that group, when they are old enough to understand maternal PKU syndrome -- but that will be their decision, what risks they want to try to manage.)
But if people do want to reproduce and science can help them do so while minimizing the risks/costs, then absolutely that is a valuable contribution to people's lives, and to the human condition in general.
The harder and more interesting question is whether these benefits are worth the risks to the people who will be affected by the research itself, to the generations who are at risk of defects or side effects as a result of imperfect understanding of the process in the early steps. But these are ethical questions associated with any kind of medical research with human subjects, and we have institutional review boards, etc, to address them on a case by case basis. So while this is a novel kind of human research, there have been related issues with other kinds of human research, and there are precedents and principals.
posted by OnceUponATime at 11:55 AM on February 24, 2014 [24 favorites]
"Rag" Yes it is, but that was because I hadn't found any other source for the 30 babies yet. But now I found this BBC article from 2001 so there ya go.
posted by dabitch at 11:56 AM on February 24, 2014
posted by dabitch at 11:56 AM on February 24, 2014
What are the actual medical results of this method? What does "Half of the babies engineered from one clinic developed defects" mean? Talk about Gattaca all you like, but there's no actual SCIENCE being reported in any of the links in this FPP. The closest I can find is an unattributed Word.doc from the Global Research article with the following:
I see lots and lots of hand-wringing and little to no science here.
posted by maryr at 12:02 PM on February 24, 2014 [6 favorites]
Of 30 fertilizations achieved after ooplasm transfer from fresh oocytes, 13 pregnancies were reported [10]. Two fetuses were karyotypically 45, XO (Turner’s syndrome). One of these fetuses aborted spontaneously and the other pregnancy was terminated. It is unknown whether a connection exists between these reported aneuploidies and the ooplasm transfer procedure.Maybe that's the source of the BBC "Up to 30 such children have been born" ? I can't read the Nature article linked via the scientist quoted above, but I'd really like to more about the known risks here.
I see lots and lots of hand-wringing and little to no science here.
posted by maryr at 12:02 PM on February 24, 2014 [6 favorites]
Ah, here, I can only skim this right now but here's what the FDA will be discussing tomorrow. Maybe someone who knows fertilization and/or isn't supposed to be making graphs right now can look through it.
posted by maryr at 12:10 PM on February 24, 2014 [2 favorites]
posted by maryr at 12:10 PM on February 24, 2014 [2 favorites]
But it's enough to give me a personal stake in questions about "Why should people who are affected by, or carriers for, genetic diseases get to reproduce?" And to me that question seems closely related to "Why should disabled people get to reproduce?" and "Why should stupid people get to reproduce?" -- to eugenics, in other words.
And those questions are also related to "should abusive alcoholic pimps get to bring up their own children?". 'Related to' != 'arguing for' and you appear to be saying "there could be a slippery slope so we must not address this question". I disagree.
posted by the agents of KAOS at 12:11 PM on February 24, 2014 [1 favorite]
And those questions are also related to "should abusive alcoholic pimps get to bring up their own children?". 'Related to' != 'arguing for' and you appear to be saying "there could be a slippery slope so we must not address this question". I disagree.
posted by the agents of KAOS at 12:11 PM on February 24, 2014 [1 favorite]
I'm not saying we shouldn't address the question. I'm saying that if you think the answer is "No, people with genetic diseases shouldn't reproduce" then I don't see why you wouldn't also say "No, people who are deaf/blind/affected by dwarfism/carriers of the BRCA gene/developmentally disabled shouldn't reproduce". The logic is exactly the same -- their offspring are likely to suffer and society will likely have to help support them to some extent. But this is exactly the logic of the eugenics movement. It is not a slippery slope -- you are already at the bottom of the slope when you argue that some people "shouldn't" reproduce.
posted by OnceUponATime at 12:21 PM on February 24, 2014 [3 favorites]
posted by OnceUponATime at 12:21 PM on February 24, 2014 [3 favorites]
If the 'defects' mentioned involved miscarriages and other problems not resulting in live births, it would be important to compare that to the rate of natural miscarriage, which is surprisingly high (a lot of them occur very early in pregnancy and are never noticed). In particular, the rate of major chromosomal defects incompatible with life, which are reabsorbed early in pregnancy, is higher than most people would expect.
If you consider that any chromosome can be duplicated or lost in meiosis, but only a couple of monosomy/trisomy states are survivable, it helps to understand. For instance, as common as Down Syndrome is, it isn't even the most common autosomal trisomy in humans - that's trisomy 16, which occurs in as many as 1% of pregnancies. However, that's incompatible with survival and results in a very early miscarriage which often goes unnoticed.
So, it would be very important to examine the specific nature of these problems and whether they resulted in spontaneous abortion or a child with a disorder, because nature has a pretty high failure rate with regard to meiosis and fertilization.
posted by Mitrovarr at 12:22 PM on February 24, 2014 [4 favorites]
If you consider that any chromosome can be duplicated or lost in meiosis, but only a couple of monosomy/trisomy states are survivable, it helps to understand. For instance, as common as Down Syndrome is, it isn't even the most common autosomal trisomy in humans - that's trisomy 16, which occurs in as many as 1% of pregnancies. However, that's incompatible with survival and results in a very early miscarriage which often goes unnoticed.
So, it would be very important to examine the specific nature of these problems and whether they resulted in spontaneous abortion or a child with a disorder, because nature has a pretty high failure rate with regard to meiosis and fertilization.
posted by Mitrovarr at 12:22 PM on February 24, 2014 [4 favorites]
I'm also interested in what happened to the children born 13 years ago and what type of defect were talking about "half of them" developed. Found a bit from Newcientist back in 2001:
The researchers examined 12 of the 30 babies born with the help of the technique and found that two of them carry donor mitochondria.
"This report is the first case of human germline genetic modification resulting in normal healthy children," say Barritt and his colleagues in the journal Human Reproduction. These mitochondria could be passed on to future generations. "We won't know till they reach reproductive age,"
[...]
However, no one knows if the added mitochondria were the reason why the fertility treatment worked in these two cases. Other, non-genetic components of the cytoplasm might have done the trick. "We think every patient is different, and some might need mitochondria for extra energy, and some might need messenger RNA or proteins," says Barritt.
posted by dabitch at 12:28 PM on February 24, 2014 [2 favorites]
The researchers examined 12 of the 30 babies born with the help of the technique and found that two of them carry donor mitochondria.
"This report is the first case of human germline genetic modification resulting in normal healthy children," say Barritt and his colleagues in the journal Human Reproduction. These mitochondria could be passed on to future generations. "We won't know till they reach reproductive age,"
[...]
However, no one knows if the added mitochondria were the reason why the fertility treatment worked in these two cases. Other, non-genetic components of the cytoplasm might have done the trick. "We think every patient is different, and some might need mitochondria for extra energy, and some might need messenger RNA or proteins," says Barritt.
posted by dabitch at 12:28 PM on February 24, 2014 [2 favorites]
I feel like I need to qualify this statement: There are no people who "shouldn't" reproduce, in my opinion.
There is one exception: people who are truly incapable of understanding the mechanics of reproduction and the consequences of their decisions. Sexual ethics and medical ethics alike are built on the principle consent. I do not have a problem with caregivers in a mental health institution attempting to prevent their patients from becoming pregnant or impregnating someone else, if those patients are truly incapable of understanding or consenting to the consequences of sexual activity.
But in general if you understand what parenthood means and want to be a parent, it is no one else's place to tell you "no."
posted by OnceUponATime at 1:04 PM on February 24, 2014 [1 favorite]
There is one exception: people who are truly incapable of understanding the mechanics of reproduction and the consequences of their decisions. Sexual ethics and medical ethics alike are built on the principle consent. I do not have a problem with caregivers in a mental health institution attempting to prevent their patients from becoming pregnant or impregnating someone else, if those patients are truly incapable of understanding or consenting to the consequences of sexual activity.
But in general if you understand what parenthood means and want to be a parent, it is no one else's place to tell you "no."
posted by OnceUponATime at 1:04 PM on February 24, 2014 [1 favorite]
If parents have "debilitating genetic diseases" and still want children, why can't they adopt?
Maybe they don't want to? It's a personal decision to adopt. If they can have a child and avoid passing on their genetic diseases, then they very well should be allowed to.
posted by Malice at 1:09 PM on February 24, 2014 [3 favorites]
Maybe they don't want to? It's a personal decision to adopt. If they can have a child and avoid passing on their genetic diseases, then they very well should be allowed to.
posted by Malice at 1:09 PM on February 24, 2014 [3 favorites]
Quick mitochondrial refresher!
Humans have a important thing in their cells called mitochondria. It has its own genetic material that it uses to make itself and do its business. That genetic material is a totally different what you normally think of as a cells genetic material which you probably think of as residing in the nucleus of the cell. (also, it's in a ring, also, there is only one copy, not pairs of chromosomes)
It's a little odd, I know. You might be tempted to think it is like a totally different organism is living symbiotically inside almost all human cells. But let's not go there.
So here's the relevant bit, humans babies get there genetic material from three places:
1) Some from genetic material found in nucleus Mom's cells,
2) Some from genetic material found in nucleus of Dad's cells
3) All of the genetic material in the Mom's mitochondria
Wow, you are saying, how did the Dad get cut out of contributing to the mitochondria? Well, the Dad's sperm delivers its material only to the nucleus of the Mom's egg. Nothing else gets in. The Mom's egg already has whole mitochondria and its from the Mom, and that was from her Mom.
This is about the same level "designer baby" or gataca as buying sperm.
tl;dr: They took an egg, swapped out the mitochondria and fertilized it with an egg.
posted by bdc34 at 1:12 PM on February 24, 2014 [5 favorites]
Humans have a important thing in their cells called mitochondria. It has its own genetic material that it uses to make itself and do its business. That genetic material is a totally different what you normally think of as a cells genetic material which you probably think of as residing in the nucleus of the cell. (also, it's in a ring, also, there is only one copy, not pairs of chromosomes)
It's a little odd, I know. You might be tempted to think it is like a totally different organism is living symbiotically inside almost all human cells. But let's not go there.
So here's the relevant bit, humans babies get there genetic material from three places:
1) Some from genetic material found in nucleus Mom's cells,
2) Some from genetic material found in nucleus of Dad's cells
3) All of the genetic material in the Mom's mitochondria
Wow, you are saying, how did the Dad get cut out of contributing to the mitochondria? Well, the Dad's sperm delivers its material only to the nucleus of the Mom's egg. Nothing else gets in. The Mom's egg already has whole mitochondria and its from the Mom, and that was from her Mom.
This is about the same level "designer baby" or gataca as buying sperm.
tl;dr: They took an egg, swapped out the mitochondria and fertilized it with an egg.
posted by bdc34 at 1:12 PM on February 24, 2014 [5 favorites]
Mitochondrial DNA doesn't replicate through meiosis and isn't packaged in the form of chromosomes so there isn't really a chance for any sort of monosomy/trisomy.
posted by Thoughtcrime at 1:13 PM on February 24, 2014 [1 favorite]
posted by Thoughtcrime at 1:13 PM on February 24, 2014 [1 favorite]
But it's enough to give me a personal stake in questions about "Why should people who are affected by, or carriers for, genetic diseases get to reproduce?"
For me, the question should be more like "Why should I put a potential child at risk of X when X really sucks" combined with "Why should I prize replicating my genes over the best interests of the rest of humanity, when there are so very many children everywhere going unloved."
But in general if you understand what parenthood means and want to be a parent, it is no one else's place to tell you "no."
Except that society has very much deemed that it is our place to tell people no: abusive parents, for example. They understand what parenthood means, presumably, and want to be parents, presumably, but we remove children from them to protect the children.
From that angle, it's not very difficult to see encouraging greater self-reflection about reproductive choices, especially when genetic disorders are a factor, as part of the same societal drive to protect children.
Note, please, that I am categorically not saying there should be laws restricting anyone's ability to reproduce (unless such laws affect absolutely everyone equally and every single person affected by such laws has access to safe, free, effective contraception) based on presence of genetic diseases.
Every pregnancy is a roll of the dice. Sometimes the dice are loaded to lose, and I think many more people would benefit from honest self-reflection about whether it's wise--or indeed ethically correct--to knowingly pass on diseases to children, and whether it's wise--or indeed ethically correct--to add more children to a planet that already can't feed or support the number of people currently on it. (Yes, I know, we grow enough food and it's mainly a distribution problem. At the end of the day, whether it's a supply or distribution problem is irrelevant because the end result is the same.)
OneUponATime I am very much not criticizing you for your decisions here. I am speaking in general terms about the world, and not your personal situation. I included quotes from you for context.
posted by feckless fecal fear mongering at 1:14 PM on February 24, 2014 [8 favorites]
For me, the question should be more like "Why should I put a potential child at risk of X when X really sucks" combined with "Why should I prize replicating my genes over the best interests of the rest of humanity, when there are so very many children everywhere going unloved."
But in general if you understand what parenthood means and want to be a parent, it is no one else's place to tell you "no."
Except that society has very much deemed that it is our place to tell people no: abusive parents, for example. They understand what parenthood means, presumably, and want to be parents, presumably, but we remove children from them to protect the children.
From that angle, it's not very difficult to see encouraging greater self-reflection about reproductive choices, especially when genetic disorders are a factor, as part of the same societal drive to protect children.
Note, please, that I am categorically not saying there should be laws restricting anyone's ability to reproduce (unless such laws affect absolutely everyone equally and every single person affected by such laws has access to safe, free, effective contraception) based on presence of genetic diseases.
Every pregnancy is a roll of the dice. Sometimes the dice are loaded to lose, and I think many more people would benefit from honest self-reflection about whether it's wise--or indeed ethically correct--to knowingly pass on diseases to children, and whether it's wise--or indeed ethically correct--to add more children to a planet that already can't feed or support the number of people currently on it. (Yes, I know, we grow enough food and it's mainly a distribution problem. At the end of the day, whether it's a supply or distribution problem is irrelevant because the end result is the same.)
OneUponATime I am very much not criticizing you for your decisions here. I am speaking in general terms about the world, and not your personal situation. I included quotes from you for context.
posted by feckless fecal fear mongering at 1:14 PM on February 24, 2014 [8 favorites]
Thoughtcrime: Mitochondrial DNA doesn't replicate through meiosis and isn't packaged in the form of chromosomes so there isn't really a chance for any sort of monosomy/trisomy.
The techniques used to manipulate the cells and conduct artificial fertilization could potentially affect the nuclear material of the egg or resultant zygote.
posted by Mitrovarr at 1:15 PM on February 24, 2014
The techniques used to manipulate the cells and conduct artificial fertilization could potentially affect the nuclear material of the egg or resultant zygote.
posted by Mitrovarr at 1:15 PM on February 24, 2014
You might be tempted to think it is like a totally different organism is living symbiotically inside almost all human cells. But let's not go there.
Yes, that path certainly leads to the Dark Side.
posted by The 10th Regiment of Foot at 1:18 PM on February 24, 2014 [2 favorites]
Yes, that path certainly leads to the Dark Side.
posted by The 10th Regiment of Foot at 1:18 PM on February 24, 2014 [2 favorites]
Perhaps I missed it, but I don't see any quantifiable "risks" being discussed other than "This is totally new, so we don't know what's going to happen. Something? Nothing? It's anyone's guess." fear (justified or not) of the unknown. Seems slightly akin to the cell-phone/brain tumor scares to me.
Granted, there's a fundamental *shudder* that goes through my psyche whenever someone starts playing with the human genome, and especially so with this, because whatever changes are made--good, bad, or indifferent, will be passed on to future offspring.
I mean, GM babies aside, we don't really know what the long-term effects of most everything created since the Industrial Revolution will be. It can be frightening to think exactly how much we're changing stuff... in ourselves, our food, our cultures, and our environments.
Less time has transpired between the T-Rex and Current Day Us than between the Stegosaurus and the T-Rex. Not to mention that most 30-somethings' great-grandparents spent at least part of their lives prior to commonly available electricity.... and today we're dealing with instant global communications, Internets, space exploration, cars, all kinds of man-made chemicals, etc. etc. etc.
posted by Debaser626 at 1:43 PM on February 24, 2014 [2 favorites]
Granted, there's a fundamental *shudder* that goes through my psyche whenever someone starts playing with the human genome, and especially so with this, because whatever changes are made--good, bad, or indifferent, will be passed on to future offspring.
I mean, GM babies aside, we don't really know what the long-term effects of most everything created since the Industrial Revolution will be. It can be frightening to think exactly how much we're changing stuff... in ourselves, our food, our cultures, and our environments.
Less time has transpired between the T-Rex and Current Day Us than between the Stegosaurus and the T-Rex. Not to mention that most 30-somethings' great-grandparents spent at least part of their lives prior to commonly available electricity.... and today we're dealing with instant global communications, Internets, space exploration, cars, all kinds of man-made chemicals, etc. etc. etc.
posted by Debaser626 at 1:43 PM on February 24, 2014 [2 favorites]
For me, the question should be more like "Why should I put a potential child at risk of X when X really sucks" combined with "Why should I prize replicating my genes over the best interests of the rest of humanity, when there are so very many children everywhere going unloved."
I don't totally disagree with your reasoning, but it's important to factor in that adoption isn't just a non-genetic route to the same kind of parenthood. The vast, vast majority of adopted kids (at least here in the UK) have been removed from home environments in which they were not treated well at all, and neglect and abuse frequently have severe and long-lasting effects even in children removed at a very young age. Being shuffled through the foster system, or back and forth between foster carers and birth family, can be damaging in its own right. These kids don't just need love - they need a particular kind of parenting and support tailored to their existing challenges that not everyone (and not everyone's underfunded and overstretched support services) is capable of giving to them, and they really deserve to end up in homes where they can get what they need.
It isn't a selfish devotion to one's own genes to say "I could probably raise my own kid from birth, but I don't think I've got what it takes to parent a sibling group aged 4-7 with severe attachment problems and a variety of very challenging behaviours."
posted by Catseye at 2:08 PM on February 24, 2014 [6 favorites]
I don't totally disagree with your reasoning, but it's important to factor in that adoption isn't just a non-genetic route to the same kind of parenthood. The vast, vast majority of adopted kids (at least here in the UK) have been removed from home environments in which they were not treated well at all, and neglect and abuse frequently have severe and long-lasting effects even in children removed at a very young age. Being shuffled through the foster system, or back and forth between foster carers and birth family, can be damaging in its own right. These kids don't just need love - they need a particular kind of parenting and support tailored to their existing challenges that not everyone (and not everyone's underfunded and overstretched support services) is capable of giving to them, and they really deserve to end up in homes where they can get what they need.
It isn't a selfish devotion to one's own genes to say "I could probably raise my own kid from birth, but I don't think I've got what it takes to parent a sibling group aged 4-7 with severe attachment problems and a variety of very challenging behaviours."
posted by Catseye at 2:08 PM on February 24, 2014 [6 favorites]
Oh agreed for sure, Catseye. I guess my feeling is that if we placed a much higher societal value on adoption--on par with biological parenting, even--within a generation or two there would be far, far fewer kids being bounced through the foster system.
But to be fair, when most people are talking about adoption, what they mean is adopting a baby.
posted by feckless fecal fear mongering at 2:21 PM on February 24, 2014
But to be fair, when most people are talking about adoption, what they mean is adopting a baby.
posted by feckless fecal fear mongering at 2:21 PM on February 24, 2014
Am I the only one who is all for genetic engineering? Yeah, yeah, there will no doubt be problems. There were serious problems caused or exacerbated by electricity, agriculture, automobiles, airplanes, and the internet too. But I'm not chomping at the bit to go live a techless hunter-gather lifestyle eating and wearing nothing I haven't caught and made myself.
Bring on the future. I think it'll be a mixture of incredible and awful, just like the past.
posted by Justinian at 2:30 PM on February 24, 2014 [3 favorites]
Bring on the future. I think it'll be a mixture of incredible and awful, just like the past.
posted by Justinian at 2:30 PM on February 24, 2014 [3 favorites]
A friend of mine is blind, because of retinitis pigmentosa. It's a genetic dominant and he got it from his mother. He had normal vision up to age 12, and by the time he was 16 his vision was completely gone. He can tell if the lights are on in a room, and that's all.
He and his wife decided not to have children.
I also have a genetic disease and it's made my life miserable. I wouldn't wish it on my worst enemy. I don't have any kids.
Do you love the idea of having kids more than the kids themselves? Do you love the idea of kids enough to risk them being miserable because of a genetic disorder? I don't, and my friend didn't.
Now I'm old and crippled, and I don't have any kids to help me. But I still think I made the right decision.
posted by Chocolate Pickle at 2:52 PM on February 24, 2014 [11 favorites]
He and his wife decided not to have children.
I also have a genetic disease and it's made my life miserable. I wouldn't wish it on my worst enemy. I don't have any kids.
Do you love the idea of having kids more than the kids themselves? Do you love the idea of kids enough to risk them being miserable because of a genetic disorder? I don't, and my friend didn't.
Now I'm old and crippled, and I don't have any kids to help me. But I still think I made the right decision.
posted by Chocolate Pickle at 2:52 PM on February 24, 2014 [11 favorites]
Bring on the future. I think it'll be a mixture of incredible and awful, just like the past.
You can get rid of a car that doesn't work.
posted by mobunited at 2:52 PM on February 24, 2014
You can get rid of a car that doesn't work.
posted by mobunited at 2:52 PM on February 24, 2014
One refrain I heard often working at a private university was that job security came mostly because, in good times and bad, the rich would always send their kids to be educated at the best places. Similarly, I suspect that genetic reproductive research will go where the rich put their money, to have the offspring they want, wherever the laws are most lax. Mistakes will happen, some rare, horrible mistakes that will get swept under the rug. Bioethics laws may come and go with paid-off local governments, but engineered offspring will always be legal somewhere in the world for elite transnational citizens with the cash to spare and the will to propagate. The rest of humanity might eventually get to make a down payment after the appropriate credit and genetics checks. Maybe not.
posted by Blazecock Pileon at 2:58 PM on February 24, 2014 [1 favorite]
posted by Blazecock Pileon at 2:58 PM on February 24, 2014 [1 favorite]
Do you love the idea of having kids more than the kids themselves? Do you love the idea of kids enough to risk them being miserable because of a genetic disorder? I don't, and my friend didn't.
Thank you for expressing what I was trying to say far more succinctly and movingly.
posted by feckless fecal fear mongering at 3:39 PM on February 24, 2014 [2 favorites]
Thank you for expressing what I was trying to say far more succinctly and movingly.
posted by feckless fecal fear mongering at 3:39 PM on February 24, 2014 [2 favorites]
Do you love the idea of kids enough to risk them being miserable because of a genetic disorder?
Well, obviously everyone who has kids risks this. Those with known heritable disorders have a higher known risk, yes. The idea of this kind of procedure is to lower that risk for some disorders. One of the questions, which is clearly not known yet, is what additional/new risk this adds. But any time you have children, you are risking a ton of possible issues.
Also, some people will have children regardless of the risk of known genetic issues (obviously, as this happens all the time). The availability of this kind of technique could lower the amount of children born with genetic disorders if those people choose to use this rather than not use it (having a child either way).
The only argument against this that I can understand is what new risk such a technique might add, which seems like something currently unknown to any real degree. The potential reward seems huge to me. Evaluating the risks and likelihood of problems is something beyond my scientific knowledge, though.
posted by wildcrdj at 4:23 PM on February 24, 2014 [1 favorite]
Well, obviously everyone who has kids risks this. Those with known heritable disorders have a higher known risk, yes. The idea of this kind of procedure is to lower that risk for some disorders. One of the questions, which is clearly not known yet, is what additional/new risk this adds. But any time you have children, you are risking a ton of possible issues.
Also, some people will have children regardless of the risk of known genetic issues (obviously, as this happens all the time). The availability of this kind of technique could lower the amount of children born with genetic disorders if those people choose to use this rather than not use it (having a child either way).
The only argument against this that I can understand is what new risk such a technique might add, which seems like something currently unknown to any real degree. The potential reward seems huge to me. Evaluating the risks and likelihood of problems is something beyond my scientific knowledge, though.
posted by wildcrdj at 4:23 PM on February 24, 2014 [1 favorite]
You can get rid of a car that doesn't work.
The whole point is to try to stop genetic diseases. There is no fool-proof way to do that without bumps in the road.
posted by Malice at 4:29 PM on February 24, 2014 [1 favorite]
The whole point is to try to stop genetic diseases. There is no fool-proof way to do that without bumps in the road.
posted by Malice at 4:29 PM on February 24, 2014 [1 favorite]
For me, the question should be more like "Why should I put a potential child at risk of X when X really sucks"
You aren't putting a potential child "at risk of X". The potential child has X. It's your choice as to whether you let the child come into existence, or not.
posted by Joe in Australia at 4:52 PM on February 24, 2014
You aren't putting a potential child "at risk of X". The potential child has X. It's your choice as to whether you let the child come into existence, or not.
posted by Joe in Australia at 4:52 PM on February 24, 2014
This is kind of ridiculous.
Daily Mail says 30 GM human babies have already been born in the United states.
The Daily Mail also says vaccines are a waste of time. It's weird how often people post Daily Mail articles as if they mean anything.
Half of them [globalresearch.ca link] developed defects so the FDA stepped in.
Wow, Global Research, another fantastic source. Did you know the US military hired 1600 nazi scientists and doctors, or that fluoride is killing us?
Not to get all ad hominemy here, but posts are a lot more meaningful when they link to respectable sources.
posted by knave at 5:06 PM on February 24, 2014 [12 favorites]
Daily Mail says 30 GM human babies have already been born in the United states.
The Daily Mail also says vaccines are a waste of time. It's weird how often people post Daily Mail articles as if they mean anything.
Half of them [globalresearch.ca link] developed defects so the FDA stepped in.
Wow, Global Research, another fantastic source. Did you know the US military hired 1600 nazi scientists and doctors, or that fluoride is killing us?
Not to get all ad hominemy here, but posts are a lot more meaningful when they link to respectable sources.
posted by knave at 5:06 PM on February 24, 2014 [12 favorites]
Wow, knave, I said it was a rag already, excusing that I had only found that to link, and there are better sources linked. If you can find better sources on this news, please feel free to share.
posted by dabitch at 5:34 PM on February 24, 2014
posted by dabitch at 5:34 PM on February 24, 2014
Well from the other links I see the BBC article about the 30 babies, but nothing other than the Daily Mail asserting problems. A few people expressing unease, but no actual evidence of harm.
posted by wildcrdj at 6:02 PM on February 24, 2014
posted by wildcrdj at 6:02 PM on February 24, 2014
You can get rid of a car that doesn't work.
Ya you can, you can do pre implantation screening: fertilize an egg in a test tube, let it divide a couple dozen times, take a couple cells and do a genetic testing.
What about the birth certificate? Does it have the names of three parents? Two of the parents have to be of the same sex. What happens in Arizona if some or all of the parents are gay?
posted by bdc34 at 6:12 PM on February 24, 2014
Ya you can, you can do pre implantation screening: fertilize an egg in a test tube, let it divide a couple dozen times, take a couple cells and do a genetic testing.
What about the birth certificate? Does it have the names of three parents? Two of the parents have to be of the same sex. What happens in Arizona if some or all of the parents are gay?
posted by bdc34 at 6:12 PM on February 24, 2014
dabitch, sorry if I missed earlier comments to the same effect. But if you can't find better sources, maybe it shouldn't be posted at all.
posted by knave at 6:45 PM on February 24, 2014 [2 favorites]
posted by knave at 6:45 PM on February 24, 2014 [2 favorites]
Gene modification. Three-parent (mitochondrial) conception. I drown in technical jelly. But this is a skirmish in a larger battle. Could be it's a true fork in the road.
If two folks (who have genetic issues) solve the genetic issue, then the whyohwhy should they procreate argument is rendered moot. My theory sees the child as the focus of the decision.
Cautionary tales: Gattacka and Code 46 point out certain issues. The innies and outies, I mean.
Also, haven't these people ever watched Star Trek? Kaaahhhhn!
Okay, that, and the Universal Health Care situation.
This has gotten beyond Gibson.
posted by mule98J at 7:23 PM on February 24, 2014
If two folks (who have genetic issues) solve the genetic issue, then the whyohwhy should they procreate argument is rendered moot. My theory sees the child as the focus of the decision.
Cautionary tales: Gattacka and Code 46 point out certain issues. The innies and outies, I mean.
Also, haven't these people ever watched Star Trek? Kaaahhhhn!
Okay, that, and the Universal Health Care situation.
This has gotten beyond Gibson.
posted by mule98J at 7:23 PM on February 24, 2014
Knave, the "30 babies" were born ten years ago, and it seems while there was much news about this then, nobody has followed up on their progress and the only current news on these babies was the Daily Rag. So the FDA discussion that takes place tomorrow that the New York Times is talking about where they'll be discussing whether the FDA should permit this and considering the risks that might exist seems to be without facit on what happened to the 30 already born.
So I posted this hoping maybe wicked smaht people on Metafilter might be in the know, as it seems the journalists have (as per usual) largely ignored or panicked about the topic.
Also, that's why I prefaced the daily mail link with "daily mail" as I doubt there were 30 babies at all. Maybe 30 embryos. But you know, the mail.
posted by dabitch at 7:43 PM on February 24, 2014
So I posted this hoping maybe wicked smaht people on Metafilter might be in the know, as it seems the journalists have (as per usual) largely ignored or panicked about the topic.
Also, that's why I prefaced the daily mail link with "daily mail" as I doubt there were 30 babies at all. Maybe 30 embryos. But you know, the mail.
posted by dabitch at 7:43 PM on February 24, 2014
Did you know the US military hired 1600 nazi scientists and doctors
Ummmmmm, they did. It was called operation paperclip.
posted by AElfwine Evenstar at 7:59 PM on February 24, 2014 [2 favorites]
Ummmmmm, they did. It was called operation paperclip.
posted by AElfwine Evenstar at 7:59 PM on February 24, 2014 [2 favorites]
Note, please, that I am categorically not saying there should be laws restricting anyone's ability to reproduce...
I'm all in favor for that kind of law, seeing as how I've got an ex S-I-L that had three girls by his first wife, two boys by his second, and now has a third baby by the live-in girlfriend. The SOB doesn't pay his child support worth a damn and can't be bothered with visitation half the time. Tells the girls they're going to get these fantastic Xmas presents, then doesn't give anything to them, but the boys get theirs, by golly.
I'm all in favor of restricting his ability to reproduce from here on, letmetellyou.
posted by BlueHorse at 8:33 PM on February 24, 2014 [1 favorite]
I'm all in favor for that kind of law, seeing as how I've got an ex S-I-L that had three girls by his first wife, two boys by his second, and now has a third baby by the live-in girlfriend. The SOB doesn't pay his child support worth a damn and can't be bothered with visitation half the time. Tells the girls they're going to get these fantastic Xmas presents, then doesn't give anything to them, but the boys get theirs, by golly.
I'm all in favor of restricting his ability to reproduce from here on, letmetellyou.
posted by BlueHorse at 8:33 PM on February 24, 2014 [1 favorite]
derail: German != Nazi
Which has nothing to do with the fact that many were. But yeah, derail.
posted by AElfwine Evenstar at 10:06 PM on February 24, 2014
Which has nothing to do with the fact that many were. But yeah, derail.
posted by AElfwine Evenstar at 10:06 PM on February 24, 2014
The Daily Mail hasn't quite got it right (shocking, I know). Here's a thoroughly documented page from the UK Human Fertilisation and Embryology Authority, including a very useful review (pdf) of the methods under discussion in the UK and the US.
The US clinical trial of cytoplasmic transfer (microinjection of 10-15% of the cellular contents of a donor egg into the recipient egg, followed by in vitro fertilization) was discontinued because it was planned to be a small trial, and even the possibility of negative outcomes outweighed the benefits.
The methods under discussion now are the maternal spindle transfer (MST) technique and the pronuclear transfer (PNT) technique. MST takes a donor egg that's had the nucleus (which contains all the genomic DNA) removed, and transfers the chromosomes and spindle of the patient's egg into it - that's followed up with in vitro fertilisation. The PNT technique fertilizes the patient's egg and the donor's egg, then removes the nuclear material from both zygotes - the nuclear material from the donor's fertilized egg is discarded, and the nuclear material from the patient's fertilized egg is substituted. This sounds like it should be the same as cytoplasmic transfer, but because some early signalling events have already transpired by the time of the swap-out, it might be more effective. You can probably see the big ethical question with PNT, though.
posted by gingerest at 10:30 PM on February 24, 2014 [5 favorites]
The US clinical trial of cytoplasmic transfer (microinjection of 10-15% of the cellular contents of a donor egg into the recipient egg, followed by in vitro fertilization) was discontinued because it was planned to be a small trial, and even the possibility of negative outcomes outweighed the benefits.
To date, over 30 ooplasmic transplantation cases have been completed at the Institute of Reproductive Medicine and Science at Saint Barnabas. The resulting 30 cases had normal fertilization and pregnancy rates with the following outcomes: 1 miscarriage, 11 singletons, 1 twin, and 1 quadruplet birth (Barritt 2000a and Brenner 2000). The first trimester spontaneous miscarriage was diagnosed as 45, XO karyotype (Barritt 2001a and Barritt 2001b), which is the most common aneuploidy associated with intracytoplasmic sperm injection (ICSI). Additionally, the twin pregnancy resulted in a female diagnosed as normal 46, XX with a chromosomally abnormal (45, XO) twin, who was also diagnosed with a form of autism called pervasive disorder. While the incidence rate of chromosomal abnormalities (1/17 or 5.9%) was in the upper range of that normally reported in the New York region (1–6%), an increased aneuploidy rate is commonly observed following ICSI and/or with advanced maternal age. Obviously the sample size was too small to draw any concrete conclusions.Harvey, A J. 2007. Impact of assisted reproductive technologies: a mitochondrial perspective of cytoplasmic transplantation. Current topics in developmental biology 77:229 -49
The methods under discussion now are the maternal spindle transfer (MST) technique and the pronuclear transfer (PNT) technique. MST takes a donor egg that's had the nucleus (which contains all the genomic DNA) removed, and transfers the chromosomes and spindle of the patient's egg into it - that's followed up with in vitro fertilisation. The PNT technique fertilizes the patient's egg and the donor's egg, then removes the nuclear material from both zygotes - the nuclear material from the donor's fertilized egg is discarded, and the nuclear material from the patient's fertilized egg is substituted. This sounds like it should be the same as cytoplasmic transfer, but because some early signalling events have already transpired by the time of the swap-out, it might be more effective. You can probably see the big ethical question with PNT, though.
posted by gingerest at 10:30 PM on February 24, 2014 [5 favorites]
emjaybee: And doesn't "designer babies" mean manipulating for things like physical appearance or talent rather than just to be disease free? There's not much of a moral quandry for most people over the second one, but we do fret about the first one, even though we can't really do it yet.
People fret over lots of things that are new. I really don't care if everyone is a supermodel in 200 years. Vague "ethical" concerns are just discomfort with the unknown.
posted by spaltavian at 2:53 PM on February 25, 2014
People fret over lots of things that are new. I really don't care if everyone is a supermodel in 200 years. Vague "ethical" concerns are just discomfort with the unknown.
posted by spaltavian at 2:53 PM on February 25, 2014
I'm not saying we shouldn't address the question. I'm saying that if you think the answer is "No, people with genetic diseases shouldn't reproduce" then I don't see why you wouldn't also say "No, people who are deaf/blind/affected by dwarfism/carriers of the BRCA gene/developmentally disabled shouldn't reproduce". The logic is exactly the same
The logic is very, very different as I understand it - people with dwarfism, Deaf people and other groups are arguing 'I think my life is great with this difference/disorder and I want to have kids with the same thing'. People who are the target for this operation are saying 'oh please let me have kids who do not suffer from my awful problem but do have my blue eyes'. So one group is self-eugenicising, if you like.
posted by the agents of KAOS at 11:03 PM on February 25, 2014 [1 favorite]
The logic is very, very different as I understand it - people with dwarfism, Deaf people and other groups are arguing 'I think my life is great with this difference/disorder and I want to have kids with the same thing'. People who are the target for this operation are saying 'oh please let me have kids who do not suffer from my awful problem but do have my blue eyes'. So one group is self-eugenicising, if you like.
posted by the agents of KAOS at 11:03 PM on February 25, 2014 [1 favorite]
Three Biological Parents and a Baby
posted by homunculus at 11:48 PM on February 25, 2014 [2 favorites]
posted by homunculus at 11:48 PM on February 25, 2014 [2 favorites]
F.D.A. Weighs Fertility Method That Raises Ethical Questions
Dr. Mitalipov presented his work at the meeting, and some participants asked whether he had tried to create a real-life environment that would be typical for a pregnant woman.posted by homunculus at 12:06 AM on February 26, 2014 [1 favorite]
“What kind of diet did you have these monkeys on?” said Dr. David L. Keefe, a professor in the department of obstetrics and gynecology at New York University School of Medicine. “Did you have them on a McDonald’s super-size stress test?”
Deaf people and other groups are arguing 'I think my life is great with this difference/disorder and I want to have kids with the same thing'
That's sort of the nub of what I was trying to get at. There is nothing wrong with being deaf or whatever, but it is hard to argue that it is not a disadvantage in society or that it can affect quality of life. I don't understand why people would deliberately want their child(ren) to have quality of life issues.
posted by feckless fecal fear mongering at 6:10 AM on February 26, 2014
That's sort of the nub of what I was trying to get at. There is nothing wrong with being deaf or whatever, but it is hard to argue that it is not a disadvantage in society or that it can affect quality of life. I don't understand why people would deliberately want their child(ren) to have quality of life issues.
posted by feckless fecal fear mongering at 6:10 AM on February 26, 2014
There is nothing wrong with being deaf or whatever, but it is hard to argue that it is not a disadvantage in society or that it can affect quality of life. I don't understand why people would deliberately want their child(ren) to have quality of life issues.
That's pretty subjective, "quality of life." I imagine Deaf parents think that the quality of their own lives is pretty good, certainly good enough to be worth living, and feel comfortable with the idea of their children having lives of similar "quality"?
In my own case, I wouldn't want to bring into the world a child with PKU if they couldn't be treated, but given the good outcomes associated with treatment (the treatment is a modified diet and an unecessarily expensive medication, in our case) the "quality" of our older daughter's life seems pretty good, and so we judged that if she had a younger sibling, that child's life would also likely be worth living.
The treatment for diabetes is also a modified diet and a fairly expensive medication. So that has some impact on quality of life, and it does run in families... As do some cancers. Asthma. Heart disease. Even depression and alchoholism and other mental health issues. I mean, if you think about it, not very many people are completely free from "genetic" diseases, since so many diseases have genetic components.
Not only that, but the children of the poor typically have lower "quality of life" on many metrics (including health) -- should poor people not have children?
Of course, many do decide they are too poor to have kids, and I know people who have decided not to have kids because of the health issues that run in their family. But that's got to be for individual people to decide based on their individual judgements of what the quality of their potential children's lives is likely to be.
Otherwise, really, nobody should ever have kids, or maybe nobody but the very rich, because who doesn't have problems which affect the quality of their lives in some way?
In any case, my original comment was in response to these comments in the thread:
If parents have "debilitating genetic diseases" and still want children, why can't they adopt?
In the wrong hands, I foresee a slew of unintended bad consequences and untold misery.
And this comment in the "half of them" link:
Making humans better, smarter, stronger has long been the goal of eugenicists. Hayes warns: "Germline enhancement has also been seriously proposed as a means of creating people with such novel cognitive, psychological, and behavioral traits that they would constitute a new, 'post-human' species, incapable of interbreeding with 'normal' humans."
The implication being that if you have a genetic problem (or pre-disposition?) you just shouldn't have kids, since it is not for mankind to tinker in correcting our own genes.
I wanted to make it clear that "just don't have kids" if you're a person whose kids are likely to have problems of any sort, is actually the solution favored by real eugenicists, historically, and is itself a form of gene tinkering.
posted by OnceUponATime at 9:20 AM on February 26, 2014 [2 favorites]
That's pretty subjective, "quality of life." I imagine Deaf parents think that the quality of their own lives is pretty good, certainly good enough to be worth living, and feel comfortable with the idea of their children having lives of similar "quality"?
In my own case, I wouldn't want to bring into the world a child with PKU if they couldn't be treated, but given the good outcomes associated with treatment (the treatment is a modified diet and an unecessarily expensive medication, in our case) the "quality" of our older daughter's life seems pretty good, and so we judged that if she had a younger sibling, that child's life would also likely be worth living.
The treatment for diabetes is also a modified diet and a fairly expensive medication. So that has some impact on quality of life, and it does run in families... As do some cancers. Asthma. Heart disease. Even depression and alchoholism and other mental health issues. I mean, if you think about it, not very many people are completely free from "genetic" diseases, since so many diseases have genetic components.
Not only that, but the children of the poor typically have lower "quality of life" on many metrics (including health) -- should poor people not have children?
Of course, many do decide they are too poor to have kids, and I know people who have decided not to have kids because of the health issues that run in their family. But that's got to be for individual people to decide based on their individual judgements of what the quality of their potential children's lives is likely to be.
Otherwise, really, nobody should ever have kids, or maybe nobody but the very rich, because who doesn't have problems which affect the quality of their lives in some way?
In any case, my original comment was in response to these comments in the thread:
If parents have "debilitating genetic diseases" and still want children, why can't they adopt?
In the wrong hands, I foresee a slew of unintended bad consequences and untold misery.
And this comment in the "half of them" link:
Making humans better, smarter, stronger has long been the goal of eugenicists. Hayes warns: "Germline enhancement has also been seriously proposed as a means of creating people with such novel cognitive, psychological, and behavioral traits that they would constitute a new, 'post-human' species, incapable of interbreeding with 'normal' humans."
The implication being that if you have a genetic problem (or pre-disposition?) you just shouldn't have kids, since it is not for mankind to tinker in correcting our own genes.
I wanted to make it clear that "just don't have kids" if you're a person whose kids are likely to have problems of any sort, is actually the solution favored by real eugenicists, historically, and is itself a form of gene tinkering.
posted by OnceUponATime at 9:20 AM on February 26, 2014 [2 favorites]
Thanks for finding that follow up on the children born, homunculus.
Dr. Cohen’s work led to the birth of 17 babies, all initially healthy. One pregnancy that was begun with a cytoplasm transfer ended in miscarriage, however, while another was aborted. In both cases, the fetus would have had Turner syndrome, a genetic abnormality of the sex chromosome.
Wow, that's a high statistic of Turner syndrome...
posted by dabitch at 1:02 PM on February 27, 2014
Dr. Cohen’s work led to the birth of 17 babies, all initially healthy. One pregnancy that was begun with a cytoplasm transfer ended in miscarriage, however, while another was aborted. In both cases, the fetus would have had Turner syndrome, a genetic abnormality of the sex chromosome.
Wow, that's a high statistic of Turner syndrome...
posted by dabitch at 1:02 PM on February 27, 2014
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posted by Chocolate Pickle at 10:29 AM on February 24, 2014 [3 favorites]