The human genome and the new eugenics
October 24, 2003 11:27 AM Subscribe
"We are becoming the masters of our own DNA. But does that give us the right to decide that my children should never have been born?" John Sundman is a science fiction novelist and the father of two children with severe medical conditions. In this two-part article he shares his experiences and thoughts on bioethics, the Human Genome Project and whether genetics research is paving the way for a resurgent eugenics movement.
Is there a moral difference between, assuming that both are possible, failing to fix a child's broken leg and failing to fix prenatally a child's medical condition? I don't think there is. It's just that science is slowly coming to allow us to the latter and I think it's great.
Of course, with any new improvement you will have the debates and the worst-case scenarios thrown around and those too are important, but people get carried away.
posted by xmutex at 12:56 PM on October 24, 2003
Of course, with any new improvement you will have the debates and the worst-case scenarios thrown around and those too are important, but people get carried away.
posted by xmutex at 12:56 PM on October 24, 2003
Speaking biologically, certain perceivable weaknesses could be considered strengths later. An example of this is Sickle Cell Disease and Malaria.
Philosophically, some people find joy out of the hand is dealt.
posted by azileretsis at 12:58 PM on October 24, 2003
Philosophically, some people find joy out of the hand is dealt.
posted by azileretsis at 12:58 PM on October 24, 2003
But does that give us the right to decide that my children should never have been born?"
That is an extremely fallacious argument. It is one thing to decide in advance that someone shouldn't be born (by using birth control, refraining from sex, in vitro selection, or many other methods), and quite another to decide post hoc that an existing person, such as this guy's kids, shouldn't have been born. We are not physically capable of turning all of our gametes into children, nor is there any moral imperative to do so.
Philosophically, some people find joy out of the hand is dealt.
Some people learn to cope. That's not to say they wouldn't have found as much or quite likely more joy if they'd been born healthy.
posted by rushmc at 1:16 PM on October 24, 2003
That is an extremely fallacious argument. It is one thing to decide in advance that someone shouldn't be born (by using birth control, refraining from sex, in vitro selection, or many other methods), and quite another to decide post hoc that an existing person, such as this guy's kids, shouldn't have been born. We are not physically capable of turning all of our gametes into children, nor is there any moral imperative to do so.
Philosophically, some people find joy out of the hand is dealt.
Some people learn to cope. That's not to say they wouldn't have found as much or quite likely more joy if they'd been born healthy.
posted by rushmc at 1:16 PM on October 24, 2003
What I've never understood is the kind of logic expressed by the first two sentences of the post (the quotation in yellow). The current availability of technology and procedures that could be used for parents to avoid the heartache of exceptionally difficult child-rearing bears no relation whatsoever to, and implies no moral imperative regarding, the birth of similarly disadvantaged children now living. In other words, just because people may choose to take advantage of genetic screening techniques today, and may use the information gathered to make decisions about carrying their fetuses to term, the outcome of any decision for a given set of information is not determinate, morally or otherwise.
A couple could very well decide to:
(a) not avail themselves of the technology, i.e., not obtain a genetic screening; or
(b) decide to carry a child to term, even knowing that it has x% chance of being disadvantaged in some way
I really only have a problem with the technology if parents are deprived of making their own choice regarding both (a) and (b).
posted by yesster at 1:21 PM on October 24, 2003
A couple could very well decide to:
(a) not avail themselves of the technology, i.e., not obtain a genetic screening; or
(b) decide to carry a child to term, even knowing that it has x% chance of being disadvantaged in some way
I really only have a problem with the technology if parents are deprived of making their own choice regarding both (a) and (b).
posted by yesster at 1:21 PM on October 24, 2003
At some point this all boils down to one simple question: What is the acceptable standard for normalcy?
All right, two questions. "What is the acceptable standard for normalcy?" and "Who gets to decide upon that standard?"
Also, I feel badly for Sundman, but he ought to consider that with two out of three kids having, in his words, "rare, chronic, severe, incurable congenital life-threatening diseases", maybe nature's trying to tell him that the combination of his and his wife's genes isn't the best one to be passing on.
*awaits flames*
posted by mr_crash_davis at 1:21 PM on October 24, 2003
All right, two questions. "What is the acceptable standard for normalcy?" and "Who gets to decide upon that standard?"
Also, I feel badly for Sundman, but he ought to consider that with two out of three kids having, in his words, "rare, chronic, severe, incurable congenital life-threatening diseases", maybe nature's trying to tell him that the combination of his and his wife's genes isn't the best one to be passing on.
*awaits flames*
posted by mr_crash_davis at 1:21 PM on October 24, 2003
There's the matter of normalcy and then there is the matter of a broken system and I think you can separate the issues. We can say clearly, I think, that the human being suffering from some debilitating genetic condition is not a properly functioning system in the biological sense and as such, should (if possible) be fixed.
Now this makes people angry, obviously. But you can assert that we should do what is in our power to prevent such illnesses and afflictions while also refraining from making normative judgments concerning the VALUE of a life of someone who suffers from such afflictions.
I have a minor heart condition and I know full well that if it were easily possibly to have fixed this before I was born I would be all for it.
posted by xmutex at 1:29 PM on October 24, 2003
Now this makes people angry, obviously. But you can assert that we should do what is in our power to prevent such illnesses and afflictions while also refraining from making normative judgments concerning the VALUE of a life of someone who suffers from such afflictions.
I have a minor heart condition and I know full well that if it were easily possibly to have fixed this before I was born I would be all for it.
posted by xmutex at 1:29 PM on October 24, 2003
"Disability" is often in the eye of the (phenotypically-normal) beholder. If you were deaf, or bipolar, or autistic, or a dwarf, you might argue that your disability doesn't always lie in the actual medical facts of your existence, but rather in how you are treated by and in comparison to "normal" people. Yes, you may literally be missing your cochlea or whatever, but the standard for disability is not (just) phenotypic variance, but how that affects your ability to live within society.
The logical conclusion of this issue--*why* have a baby you know will not be 100% "perfect"?--is one I myself am going to have to deal with in the years to come. I have a minor red blood cell disorder (spherocytosis) which impacts my life not a jot, except for the part about having to have my spleen removed when I was a kid, which is the standard treatment for it. Also, getting flu vaccines and pneumonia vaccines and the like, since I'm now (post-spleen) more susceptible. Nobody else in my family has the disorder, though it's fairly common, nearly as much so as Type I diabetes. Looks like I'm a mutant like the X-Men.
The rub here, like so many other "disability" issues, is not in my actual health or quality of life or lifespan--all perfectly fine, thank you--but in how that is perceived and responded to by "nomal" people. In this case, my mom. Had prenatal testing been developed for spherocytosis before I was born in '79, I suspect I would have been aborted. She's said to me on occasion that had she known I had the disorder when I was little--I wasn't diagnosed until I was about six or seven--she would have thought twice about having my younger siblings, lest they have it too.
This, for a disorder (not even rising to the level of disease) that even today probably doesn't have a prenatal test available for it, because no one cares if your kid has funny-shaped blood cells, since the treatment is simple and barely affects his/her life. Yet I'm being strongly urged by my relatives that when the time comes for me to have kids (I'm getting married a week from tomorrow) that instead of doing the bumb-and-grind, I should go to a genetic counselor and ask about tests and seek out genetic screening and in-vitro fertilization, because why should I pass this on to my kids? Why should I "force" them to have this disorder? (It's a 50/50 chance they'd have it too.)
The implication is that 1) if you *can* do something about not passing it on to your kids, but don't, you're a cruel parent, because 2) a life with spherocytosis apparently isn't worth living. And there's the presumption that 3) a genetically hand-picked baby made with IVF will of course, be absolutely perfect and superior in all respects. If there's this much societal pressure to abort (or never create in the first place) over a fairly innocuous red blood cell disorder, how much more so for women whose unborn child might have achondroplasia dwarfism? Or Down's Syndrome?
We're not talking about "fixing" my future fetuses, or whatever euphimism people like to employ, we're talking abortions. Or discarding the ones that don't measure up, pre-implanatation, and dumping the "inferior" embryos. Being pro-choice, I don't believe that an embryo or even an early-term fetus is equivalent to full-on human life, but I have absolute sympathy with pro-lifers who correctly point out the slipperly slope from "that fetus doesn't deserve to exist because of medical condition X" to "that person...". *Especially* when the people choosing that route think they're doing it for the (now-dead) child's own good, since they think the kid's quality of life wouldn't have been 100% up to par, maybe just 95%.
In any case, I have the strong urge, when the time comes, to just go get knocked-up the traditional way. But the knowledge that my parents will likely take the news that they would be grandparents not with elation but with disgust and trepidation is going to be mighty annoying.
posted by Asparagirl at 1:33 PM on October 24, 2003
The logical conclusion of this issue--*why* have a baby you know will not be 100% "perfect"?--is one I myself am going to have to deal with in the years to come. I have a minor red blood cell disorder (spherocytosis) which impacts my life not a jot, except for the part about having to have my spleen removed when I was a kid, which is the standard treatment for it. Also, getting flu vaccines and pneumonia vaccines and the like, since I'm now (post-spleen) more susceptible. Nobody else in my family has the disorder, though it's fairly common, nearly as much so as Type I diabetes. Looks like I'm a mutant like the X-Men.
The rub here, like so many other "disability" issues, is not in my actual health or quality of life or lifespan--all perfectly fine, thank you--but in how that is perceived and responded to by "nomal" people. In this case, my mom. Had prenatal testing been developed for spherocytosis before I was born in '79, I suspect I would have been aborted. She's said to me on occasion that had she known I had the disorder when I was little--I wasn't diagnosed until I was about six or seven--she would have thought twice about having my younger siblings, lest they have it too.
This, for a disorder (not even rising to the level of disease) that even today probably doesn't have a prenatal test available for it, because no one cares if your kid has funny-shaped blood cells, since the treatment is simple and barely affects his/her life. Yet I'm being strongly urged by my relatives that when the time comes for me to have kids (I'm getting married a week from tomorrow) that instead of doing the bumb-and-grind, I should go to a genetic counselor and ask about tests and seek out genetic screening and in-vitro fertilization, because why should I pass this on to my kids? Why should I "force" them to have this disorder? (It's a 50/50 chance they'd have it too.)
The implication is that 1) if you *can* do something about not passing it on to your kids, but don't, you're a cruel parent, because 2) a life with spherocytosis apparently isn't worth living. And there's the presumption that 3) a genetically hand-picked baby made with IVF will of course, be absolutely perfect and superior in all respects. If there's this much societal pressure to abort (or never create in the first place) over a fairly innocuous red blood cell disorder, how much more so for women whose unborn child might have achondroplasia dwarfism? Or Down's Syndrome?
We're not talking about "fixing" my future fetuses, or whatever euphimism people like to employ, we're talking abortions. Or discarding the ones that don't measure up, pre-implanatation, and dumping the "inferior" embryos. Being pro-choice, I don't believe that an embryo or even an early-term fetus is equivalent to full-on human life, but I have absolute sympathy with pro-lifers who correctly point out the slipperly slope from "that fetus doesn't deserve to exist because of medical condition X" to "that person...". *Especially* when the people choosing that route think they're doing it for the (now-dead) child's own good, since they think the kid's quality of life wouldn't have been 100% up to par, maybe just 95%.
In any case, I have the strong urge, when the time comes, to just go get knocked-up the traditional way. But the knowledge that my parents will likely take the news that they would be grandparents not with elation but with disgust and trepidation is going to be mighty annoying.
posted by Asparagirl at 1:33 PM on October 24, 2003
with two out of three kids having, in his words, "rare, chronic, severe, incurable congenital life-threatening diseases", maybe nature's trying to tell him that the combination of his and his wife's genes isn't the best one to be passing on.
As I understand it, their genes had nothing to do with Jakob's condition, that was the toxoplasmosis parasite.
"For it was toxoplasmosis protozoans that ate good portions of my son's brain, eyes, and nervous system when he was a fetus, and that remain lodged inside him 20 years later, waiting for a weakening of his immune system -- like sleeper cells of little suicide bombers waiting for the signal... my wife, Betty Burton, worked with the Massachusetts Legislature to enact what we call "Jakob's Law," which requires hospitals to test umbilical cord blood for toxoplasmosis. Had that law been in place in 1983, our son's infection wouldn't have gone undiagnosed and untreated for the crucial first year of his life."
posted by homunculus at 1:38 PM on October 24, 2003
As I understand it, their genes had nothing to do with Jakob's condition, that was the toxoplasmosis parasite.
"For it was toxoplasmosis protozoans that ate good portions of my son's brain, eyes, and nervous system when he was a fetus, and that remain lodged inside him 20 years later, waiting for a weakening of his immune system -- like sleeper cells of little suicide bombers waiting for the signal... my wife, Betty Burton, worked with the Massachusetts Legislature to enact what we call "Jakob's Law," which requires hospitals to test umbilical cord blood for toxoplasmosis. Had that law been in place in 1983, our son's infection wouldn't have gone undiagnosed and untreated for the crucial first year of his life."
posted by homunculus at 1:38 PM on October 24, 2003
homunculus, that is why I chose to quote Sundman's own words regarding the "rare, chronic, severe, incurable congenital life-threatening diseases". If there's any misunderstanding there it's due to how he chose to describe it.
posted by mr_crash_davis at 1:48 PM on October 24, 2003
posted by mr_crash_davis at 1:48 PM on October 24, 2003
Yeah, and his other daughter is bipolar, which is hardly rare--though the rest of the words still apply.
posted by Asparagirl at 1:51 PM on October 24, 2003
posted by Asparagirl at 1:51 PM on October 24, 2003
I agree, he should have been more clear. He describes the difference and the dilema better later in the article:
For you see, Jakob's case is the easy one for us. We understand how we feel about toxoplasmosis, an invading organism that attacked our precious boy while he was still in the womb. We don't hate the organism for the "end result," of course: Our son is just fine the way he is, thank you very much. The fact that Jakob does not see very well and has poor coordination is about as significant to our relationship as the fact that I can't dunk a basketball or win a chess match against any reasonably proficient player. We hate toxoplasmosis and want it abolished from the earth only because of the pain and trauma it has caused our son, not because it has diminished him.posted by homunculus at 1:54 PM on October 24, 2003
But how are we to feel about Jane's bipolar disorder? That's built into who she is, just as Down Syndrome is built into Pastor Robison's children. We're not going to pray that our daughter be reinvented on the fly. That is a disgusting thought. I would love to see her suffer less, however.
A world without people like Helen Keller, or like Jane and Jakob, would be an impoverished world indeed. May I never live to see it. But what kind of world can I expect to see? Whither are we tending? I have my own reading of the tea leaves, my own decoding of the genome, and I don't like what I see.
BTW, here's an earlier thread about a father whose children have a rare genetic disorder, and who founded a biotech firm in order to find a cure.
posted by homunculus at 2:00 PM on October 24, 2003
posted by homunculus at 2:00 PM on October 24, 2003
First off if you haven't seen Gattaca a 1997 movie, go do so now, it's a brilliant movie that will make you think.
That said, I don't expect to die without some GE and Cyber parts in me unless I do so in the next 10 years. As for my children, I have no moral qualms with giving them the best possible future.
posted by woil at 2:04 PM on October 24, 2003
That said, I don't expect to die without some GE and Cyber parts in me unless I do so in the next 10 years. As for my children, I have no moral qualms with giving them the best possible future.
posted by woil at 2:04 PM on October 24, 2003
I guess I'm a cruel heartless bastard, because I don't see how a world without bipolar disease or Down Syndome or (name your pet genetic disorder) would be "impoverished". As a parent of three "normal" children I thank God or Allah or Vishnu or the roll of the genetic dice (whichever you prefer) that my children are healthy, happy children with the full use of all their faculties and appendages. My dream would be that all parents were as blessed (lucky, choose your own factor) as I have been, and if genetic engineering can ensure that, I'm all for it.
posted by mr_crash_davis at 2:06 PM on October 24, 2003 [1 favorite]
posted by mr_crash_davis at 2:06 PM on October 24, 2003 [1 favorite]
But the issue isn't whether you would seek medical treatment for your kids if they had a disease. It's whether you would abort them if they were found in utero to have a disease. Or a disorder. Or the wrong hair color. Or whatever criteria the parent deems important to the child's quality of life--and, not coincidentally, the parent's.
Gattaca is a great movie, but it would be a lousy world to live in.
posted by Asparagirl at 2:14 PM on October 24, 2003
Gattaca is a great movie, but it would be a lousy world to live in.
posted by Asparagirl at 2:14 PM on October 24, 2003
The "disability rights critique" of genetic testing (page 2 of the article) seems deeply pernicious to me. It seems to largely boil down to "People need to keep having disabled babies, because if they were to stop, that would harm us, the already disabled." Or whatever language you'd prefer instead of disabled.
Which treats those hypothetical kids as means to their own ends instead of as worthwhile ends in themselves, which is wrong.
I dunno about the stuff where you're making a whole pile of embryos and only keeping the ones that pass muster. But handwave a system that selects a sperm and ovum, so avoiding the multiple abortion problem (just assume it works).
In that case, lots of things probably should be selected for to the extent that they can be reliably controlled. If the possibility exists for you to choose whether your child will be smart or not mentally disabled, not retarded, but just sort of dumb, you should avail yourselves of it. Presumably nobody would say, all else equal, "Make my kid kind of dumb; he or she shouldn't get to be smart." Why would it then be moral to fail to select, and thereby subject your child to a positive risk of something that you would not subject him or her to? The only answers I can think of also boil down to treating that child as an end to someone else's means, not as an end in him or herself.
Where it will get ugly and difficult isn't in selecting against and more-or-less abolishing Down's syndrome and Tay-Sachs and cystic fibrosis. The thought experiment is easy -- imagine someone with one of these conditions temporarily altered to lack it. Do you think that they would be likely to choose to be returned to their previous state?
Where it will get ugly and difficult are for things that are pretty clearly double-edged swords, like at least the lower grades of bipolar disorder, where you know that you might well have a kid who would have been better off controllably bipolar.
posted by ROU_Xenophobe at 2:16 PM on October 24, 2003
Which treats those hypothetical kids as means to their own ends instead of as worthwhile ends in themselves, which is wrong.
I dunno about the stuff where you're making a whole pile of embryos and only keeping the ones that pass muster. But handwave a system that selects a sperm and ovum, so avoiding the multiple abortion problem (just assume it works).
In that case, lots of things probably should be selected for to the extent that they can be reliably controlled. If the possibility exists for you to choose whether your child will be smart or not mentally disabled, not retarded, but just sort of dumb, you should avail yourselves of it. Presumably nobody would say, all else equal, "Make my kid kind of dumb; he or she shouldn't get to be smart." Why would it then be moral to fail to select, and thereby subject your child to a positive risk of something that you would not subject him or her to? The only answers I can think of also boil down to treating that child as an end to someone else's means, not as an end in him or herself.
Where it will get ugly and difficult isn't in selecting against and more-or-less abolishing Down's syndrome and Tay-Sachs and cystic fibrosis. The thought experiment is easy -- imagine someone with one of these conditions temporarily altered to lack it. Do you think that they would be likely to choose to be returned to their previous state?
Where it will get ugly and difficult are for things that are pretty clearly double-edged swords, like at least the lower grades of bipolar disorder, where you know that you might well have a kid who would have been better off controllably bipolar.
posted by ROU_Xenophobe at 2:16 PM on October 24, 2003
asparagirl: IIRC, they didn't do selection via abortion in Gattaca. ISTR that they scanned both parents' genomes and synthetically assembled an "optimal" kid's genome.
posted by ROU_Xenophobe at 2:18 PM on October 24, 2003
posted by ROU_Xenophobe at 2:18 PM on October 24, 2003
And, COME ON!, I hope we can also recognize that there's a massive, outrageous, incredible difference between a child having some critic genetic disease that threatens their life daily and blonde or red hair.
That's hysteria. That's one of the core problems with the debate, that people like to make insane connections like that. It's the worst sort of straw man argument one could make.
posted by xmutex at 2:22 PM on October 24, 2003
That's hysteria. That's one of the core problems with the debate, that people like to make insane connections like that. It's the worst sort of straw man argument one could make.
posted by xmutex at 2:22 PM on October 24, 2003
I guess I'm a cruel heartless bastard, because I don't see how a world without bipolar disease or Down Syndome or (name your pet genetic disorder) would be "impoverished".
Bipolar disorder seems to confer benefits as well as the obvious drawbacks. Heightened creativity, especially in the bursts of manic and hypomanic activity is the obvious one. There's also at least some evidence that people who are wildly bipolar are getting too much of a good gene, and have lots of relatives who don't suffer from the swings but are highly creative. The relevant book is Jamison's Touched By Fire or similar title, but I haven't looked at it in years.
I'm not aware of countervailing benefits to the person in question for Down's or CF.
posted by ROU_Xenophobe at 2:24 PM on October 24, 2003
Bipolar disorder seems to confer benefits as well as the obvious drawbacks. Heightened creativity, especially in the bursts of manic and hypomanic activity is the obvious one. There's also at least some evidence that people who are wildly bipolar are getting too much of a good gene, and have lots of relatives who don't suffer from the swings but are highly creative. The relevant book is Jamison's Touched By Fire or similar title, but I haven't looked at it in years.
I'm not aware of countervailing benefits to the person in question for Down's or CF.
posted by ROU_Xenophobe at 2:24 PM on October 24, 2003
One copy of the CF gene protects against cholera, but two make a sick kid.
posted by Asparagirl at 2:31 PM on October 24, 2003
posted by Asparagirl at 2:31 PM on October 24, 2003
'I hope we can also recognize that there's a massive, outrageous, incredible difference between a child having some critic genetic disease that threatens their life daily and blonde or red hair."
But the principle behind them is exactly the same. It may seem acceptable for one set of parents to abort a fetus with acondroplasia dwarfism and ridiculous for another set to abort a fetus with blond hair. Neither is a particularly harmful condition. But the prevailing principle of "we're the parents so we get to pick what attributes will make our child's life easier and more worth living" is exactly the same. Legal approval of one would have to imply legal approval of the other.
posted by Asparagirl at 2:37 PM on October 24, 2003
But the principle behind them is exactly the same. It may seem acceptable for one set of parents to abort a fetus with acondroplasia dwarfism and ridiculous for another set to abort a fetus with blond hair. Neither is a particularly harmful condition. But the prevailing principle of "we're the parents so we get to pick what attributes will make our child's life easier and more worth living" is exactly the same. Legal approval of one would have to imply legal approval of the other.
posted by Asparagirl at 2:37 PM on October 24, 2003
Asparagirl: Can you really say that the desire for a child to be free of lethal genetic condition Y is the same as the desire for a child to be red-haired? I think that's an impossible claim. One is clearly a demonstrable concern for the child's health and the other is vanity, or some other bizarre neurosis.
In that vein, I would have no problem with parents aborting a baby who will not live long or will live in crippling pain/constant need of medical attention/etc. To knowingly have such a baby could even, I think, be considered child endangerment, or certainly somewhat cruel. People who would abort based on hair color can rightly and logically be written off as vain and clearly insane.
So it seems that the principle behind the two desires-- hair color vs. health-- are drastically different.
posted by xmutex at 2:58 PM on October 24, 2003
In that vein, I would have no problem with parents aborting a baby who will not live long or will live in crippling pain/constant need of medical attention/etc. To knowingly have such a baby could even, I think, be considered child endangerment, or certainly somewhat cruel. People who would abort based on hair color can rightly and logically be written off as vain and clearly insane.
So it seems that the principle behind the two desires-- hair color vs. health-- are drastically different.
posted by xmutex at 2:58 PM on October 24, 2003
when the people choosing that route think they're doing it for the (now-dead) child's own good
You're making the same logical error I decried above. There is no "now-dead" child. There never was. What is being done is choosing to make children of the best possible (i.e., healthiest) material available. If you were building a new home and had a choice between a pile of good lumber and a bunch of wormy two-by-fours, I don't think you'd hesitate in making your choice, nor would you waste a moment lamenting the now-dead house that you selected against (which was never constructed).
What you are arguing is that a child/person with X condition is "good enough," because it impacts them in a minor way (as in your case) or because if it is more serious, they are able nonetheless to derive some satisfaction out of their life. And that is a good argument if someone is suggesting shooting you to put you out of your presumed misery (which no one is, of course). But had your mother had the data to select against your particular genetic combination in favor of another, and had she elected to do so, then you would never have existed, and there would be another person who did exist. If you are postulating some guaranteed right to be born, what of them? Do you mourn every single one of your father's sperm (or your mother's eggs) save those miniscule few which resulted in you and your siblings?
Considering the issue after a combination has occurred and an individual has been produced, born, and grown up is not comparable to considering the issue before a person exists. If you aborted a child, you might feel badly for a number of reasons, but you would (could) never mourn the specific individual that might have been produced, because he or she never existed and so you never knew them. If you look at your fifteen year old child and think about a world in which they had never existed because you had aborted their potential before they existed, you can never get away from the reality of their existence, so of course you are going to feel differently about the question.
I hope you are just venting when you threaten to make such important decisions regarding your potential children's health and well being not based on any rational process but simply to spite your family members. That would be an appalling thing to actually do.
posted by rushmc at 3:01 PM on October 24, 2003 [1 favorite]
You're making the same logical error I decried above. There is no "now-dead" child. There never was. What is being done is choosing to make children of the best possible (i.e., healthiest) material available. If you were building a new home and had a choice between a pile of good lumber and a bunch of wormy two-by-fours, I don't think you'd hesitate in making your choice, nor would you waste a moment lamenting the now-dead house that you selected against (which was never constructed).
What you are arguing is that a child/person with X condition is "good enough," because it impacts them in a minor way (as in your case) or because if it is more serious, they are able nonetheless to derive some satisfaction out of their life. And that is a good argument if someone is suggesting shooting you to put you out of your presumed misery (which no one is, of course). But had your mother had the data to select against your particular genetic combination in favor of another, and had she elected to do so, then you would never have existed, and there would be another person who did exist. If you are postulating some guaranteed right to be born, what of them? Do you mourn every single one of your father's sperm (or your mother's eggs) save those miniscule few which resulted in you and your siblings?
Considering the issue after a combination has occurred and an individual has been produced, born, and grown up is not comparable to considering the issue before a person exists. If you aborted a child, you might feel badly for a number of reasons, but you would (could) never mourn the specific individual that might have been produced, because he or she never existed and so you never knew them. If you look at your fifteen year old child and think about a world in which they had never existed because you had aborted their potential before they existed, you can never get away from the reality of their existence, so of course you are going to feel differently about the question.
I hope you are just venting when you threaten to make such important decisions regarding your potential children's health and well being not based on any rational process but simply to spite your family members. That would be an appalling thing to actually do.
posted by rushmc at 3:01 PM on October 24, 2003 [1 favorite]
"Asparagirl: Can you really say that the desire for a child to be free of lethal genetic condition Y is the same as the desire for a child to be red-haired?"
If it's Lethal genetic condition Y, then no, of course not! But the situations the author of the Salon article is talking about (blindness, bipolar disorder) or the one I cited (achondroplasia dwarfism) aren't lethal. I picked dwarfism as an example, because I don't see any real difference in selecting against that than I do in selecting against hair color, since neither carries any real medical problems (well, minor ones in some dwarfism) and can be seen as a purely cosmetic choice. And yes, the genetic test for achrondroplasia exists and presumably a number of those fetuses have been destroyed.
It's those sorts of choices that trouble me. I wouldn't begrudge parents choosing to terminate, say, a hydrocephalic or grossly malformed fetus or one with Tay Sachs. But the article isn't really talking about that, so it's as much a straw man to talk only about children with fatal diseases as it is to talk about blonde babies.
posted by Asparagirl at 3:15 PM on October 24, 2003
If it's Lethal genetic condition Y, then no, of course not! But the situations the author of the Salon article is talking about (blindness, bipolar disorder) or the one I cited (achondroplasia dwarfism) aren't lethal. I picked dwarfism as an example, because I don't see any real difference in selecting against that than I do in selecting against hair color, since neither carries any real medical problems (well, minor ones in some dwarfism) and can be seen as a purely cosmetic choice. And yes, the genetic test for achrondroplasia exists and presumably a number of those fetuses have been destroyed.
It's those sorts of choices that trouble me. I wouldn't begrudge parents choosing to terminate, say, a hydrocephalic or grossly malformed fetus or one with Tay Sachs. But the article isn't really talking about that, so it's as much a straw man to talk only about children with fatal diseases as it is to talk about blonde babies.
posted by Asparagirl at 3:15 PM on October 24, 2003
"You're making the same logical error I decried above. There is no "now-dead" child. There never was."
Many genetic problems only become apparent in the second trimester, so yes, I think a five-month-old fetus aborted for its Down's Syndrome can be said to have existed. But this is one of those pro-choice/pro-life nether regions, and I fall on the side of thinking that although I'm pro-choice, past a certain point in the pregnancy the fetus ain't just a lump of cells. Your mileage may vary.
"Do you mourn every single one of your father's sperm (or your mother's eggs) save those miniscule few which resulted in you and your siblings?"
Of course not. But we're not just pre-choosing eggs and sperm as we would lumber. We're deciding what to do with an already-existing embryo/fetus, and whether it's morally okay to kill it if we learn after it has been created that it has a disorder of some sort. Especially--and see my reply to xmutex--if that disorder isn't of the fatal or lethal sort, but of the vague "quality of life"/cosmetic sort, which is what the Salon article focuses on. And which is, yes, applicable to my case.
And no, I wouldn't have kids without thinking over the genetics issue quite a bit more and talking about it with the hubby-to-be. I'm still not sure what I'll end up doing. I suspect that the whole issue may turn out to be academic since I don't think a pre-natal test for spherocytosis exists yet, even though the genes are long-identified, simply because no one would ever think to abort a fetus because of such a mild issue. Except, of course, that many people, like my parents, did and do, and I find that incredibly disturbing.
And discussing whether a gene should be left in the gene pool because it may have some value against some other disease is interesting, but not really a reason for or against getting rid of "undesirable" fetuses. Spherocystosis, like sickle cell anemia, protects against malaria, but that's of little comfort or relevance when you're living in swamp-free New York.
posted by Asparagirl at 3:35 PM on October 24, 2003
Many genetic problems only become apparent in the second trimester, so yes, I think a five-month-old fetus aborted for its Down's Syndrome can be said to have existed. But this is one of those pro-choice/pro-life nether regions, and I fall on the side of thinking that although I'm pro-choice, past a certain point in the pregnancy the fetus ain't just a lump of cells. Your mileage may vary.
"Do you mourn every single one of your father's sperm (or your mother's eggs) save those miniscule few which resulted in you and your siblings?"
Of course not. But we're not just pre-choosing eggs and sperm as we would lumber. We're deciding what to do with an already-existing embryo/fetus, and whether it's morally okay to kill it if we learn after it has been created that it has a disorder of some sort. Especially--and see my reply to xmutex--if that disorder isn't of the fatal or lethal sort, but of the vague "quality of life"/cosmetic sort, which is what the Salon article focuses on. And which is, yes, applicable to my case.
And no, I wouldn't have kids without thinking over the genetics issue quite a bit more and talking about it with the hubby-to-be. I'm still not sure what I'll end up doing. I suspect that the whole issue may turn out to be academic since I don't think a pre-natal test for spherocytosis exists yet, even though the genes are long-identified, simply because no one would ever think to abort a fetus because of such a mild issue. Except, of course, that many people, like my parents, did and do, and I find that incredibly disturbing.
And discussing whether a gene should be left in the gene pool because it may have some value against some other disease is interesting, but not really a reason for or against getting rid of "undesirable" fetuses. Spherocystosis, like sickle cell anemia, protects against malaria, but that's of little comfort or relevance when you're living in swamp-free New York.
posted by Asparagirl at 3:35 PM on October 24, 2003
a hydrocephalic or grossly malformed fetus
Whoops, I meant to say microcephalic. Apologies to any water-on-the-brain babies who read that!
posted by Asparagirl at 3:37 PM on October 24, 2003
Whoops, I meant to say microcephalic. Apologies to any water-on-the-brain babies who read that!
posted by Asparagirl at 3:37 PM on October 24, 2003
As the child of a parent with a chronic, debilatating, incurable disease with at least a genetic element if not cause, who's witnessed the effects of "rare, chronic, severe, incurable congenital life-threatening diseases," my choice is not to have children.
Not a simple decision by any means, especially when there's no definitive test for either myself or any potential children. But it's one case where I'd rather be safe than very, very sorry.
posted by OneSmartMonkey at 3:40 PM on October 24, 2003
Not a simple decision by any means, especially when there's no definitive test for either myself or any potential children. But it's one case where I'd rather be safe than very, very sorry.
posted by OneSmartMonkey at 3:40 PM on October 24, 2003
It's unclear from your post, OneSmartMonkey...are you saying that even if there were a test that could tell you that your child would be free of the genetic defect, that you would not avail yourself of it?
posted by rushmc at 3:50 PM on October 24, 2003
posted by rushmc at 3:50 PM on October 24, 2003
I guess I'm a cruel heartless bastard, because I don't see how a world without bipolar disease or Down Syndome or (name your pet genetic disorder) would be "impoverished".
there's some argument to be made about how being bipolar can augment creative capacity; see here
lists of famous alleged bipolar musicians/artists/writers
posted by juv3nal at 4:02 PM on October 24, 2003
there's some argument to be made about how being bipolar can augment creative capacity; see here
lists of famous alleged bipolar musicians/artists/writers
posted by juv3nal at 4:02 PM on October 24, 2003
...so impoverished in a cultural sense i think is one way of reading it.
posted by juv3nal at 4:03 PM on October 24, 2003
posted by juv3nal at 4:03 PM on October 24, 2003
Nope, I would avail myself of it by all means. There's no test. So you either play the odds or not.
posted by OneSmartMonkey at 4:04 PM on October 24, 2003
posted by OneSmartMonkey at 4:04 PM on October 24, 2003
Okay, was just checking because I'm sure there are some who would forego a test because they deemed it "unnatural."
posted by rushmc at 4:41 PM on October 24, 2003
posted by rushmc at 4:41 PM on October 24, 2003
I think people are missing a few key points. First, I'm not so certain how I feel about abortion, but since we already allow that, I guess I don't see what would be so entirely wrong with allowing people to abort children with severe abnormalities. However, when this becomes widespread for two i llneeses, two things become apparent.
(1) People with the type of condition become sort of a dying culture. Salon had another article about how cochlear implants were going to effectively wipe out the deaf/lip-reading "culture". If you've grown up around certain conventions, and they are all going to dissappear, that is tragic. More importantly though, will society permit people to even have a choice? How long before people with children with Down Syndrome will have to abort their children, not because theyw ant to, but because programs to support such parents have all been cut? I think this is where the big moral question is. Does society have to support such children through special education programs or is it now the parents responsibiity/choice?
(2) If your eally think this is only going to be applied for diseases you are truly naive. Designer babies are coming soon, within 20-30 years if i had to guesstimate. Microarrays are going to allow much better classification of genes, and its only time before genes are linked to behaviors/attitudes. Its coming, and thats definitely the bigger question.
posted by nads at 4:49 PM on October 24, 2003
(1) People with the type of condition become sort of a dying culture. Salon had another article about how cochlear implants were going to effectively wipe out the deaf/lip-reading "culture". If you've grown up around certain conventions, and they are all going to dissappear, that is tragic. More importantly though, will society permit people to even have a choice? How long before people with children with Down Syndrome will have to abort their children, not because theyw ant to, but because programs to support such parents have all been cut? I think this is where the big moral question is. Does society have to support such children through special education programs or is it now the parents responsibiity/choice?
(2) If your eally think this is only going to be applied for diseases you are truly naive. Designer babies are coming soon, within 20-30 years if i had to guesstimate. Microarrays are going to allow much better classification of genes, and its only time before genes are linked to behaviors/attitudes. Its coming, and thats definitely the bigger question.
posted by nads at 4:49 PM on October 24, 2003
JS needs to lighten up. Read his book "Acts of the Apostles". He's nuts.
posted by delmoi at 5:09 PM on October 24, 2003
posted by delmoi at 5:09 PM on October 24, 2003
Why do you say that, delmoi?
One thing that bothered me about the article is that JS has decided that the advance of such knowledge is inevitable, mostly because people will push for it because of the therapeutic benefits. It seems more important to discuss the public's apathy.
On whether public support programs will cease. Well, currently there is a Downs test. Have any politicians seriously considered such a measure? And we're not necessarily talking only about abortion here. As nads says, if the procedures are started pre-conception, that is not an issue.
posted by Charmian at 5:37 PM on October 24, 2003
One thing that bothered me about the article is that JS has decided that the advance of such knowledge is inevitable, mostly because people will push for it because of the therapeutic benefits. It seems more important to discuss the public's apathy.
On whether public support programs will cease. Well, currently there is a Downs test. Have any politicians seriously considered such a measure? And we're not necessarily talking only about abortion here. As nads says, if the procedures are started pre-conception, that is not an issue.
posted by Charmian at 5:37 PM on October 24, 2003
JS needs to lighten up. Read his book "Acts of the Apostles". He's nuts.
Why do you say that, delmoi?
Maybe because of what Sundman himself says:
Why do you say that, delmoi?
Maybe because of what Sundman himself says:
Occasionally somebody will timidly approach, as if I had the plague or something, and ask for a flyer. I'll hand them a copy of a review from Slashdot or Kuro5hin or Salon.posted by homunculus at 5:43 PM on October 24, 2003
"You got reviewed in Salon? I thought you were some kind of crackpot."
"Yes, I know," I say. "I am."
Normalcy drift. As children become more 'perfect' the things we currently consider petty and not worth fixing in them become the very things which marginalize them and become cruel disadvantages in the society they grow up in.
I don't worry about this though. There are other, weirder things that I think will happen because of this kind of technology.
posted by wobh at 5:51 PM on October 24, 2003
I don't worry about this though. There are other, weirder things that I think will happen because of this kind of technology.
posted by wobh at 5:51 PM on October 24, 2003
Such as...? Animal/Human hybrids? Clones? What?
posted by Asparagirl at 6:37 PM on October 24, 2003
posted by Asparagirl at 6:37 PM on October 24, 2003
Random thoughts:
1. A cat was cloned not long ago. The clone had different coloration than the, uh, progenitor. Clearly there's more at work than genetics--such as the womb environment--that affect the expression of genes. People might want to choose redheads, but may not get the option.
2. For the past 10+ years, there have been huge sex imbalances in India and China, thanks to the ready availability of ultrasound and abortions. Choosing the traits of one's offspring is already happening.
3. I wonder if a child with toxoplasmosis would have survived its first year, say, 100 years ago. Our current era may be a historical anomaly where we are wealthy and advanced enough to care for the disabled, but not wealthy and advanced enough to prevent disability.
4. OK, so, we've had one Helen Keller. Does society need more to be further uplifted, or can we continue to draw on her inspirational example without seeing her condition inflicted on more people? If Sundman thinks we've overdrawn that reserve, he's a nutbar.
5. Even if we can genetically sculpt all our children to be the very incarnations of Greek gods, there will still be lots of disability for nutbars like Sundman to admire. People get injured. Shit happens.
posted by adamrice at 7:36 PM on October 24, 2003 [1 favorite]
1. A cat was cloned not long ago. The clone had different coloration than the, uh, progenitor. Clearly there's more at work than genetics--such as the womb environment--that affect the expression of genes. People might want to choose redheads, but may not get the option.
2. For the past 10+ years, there have been huge sex imbalances in India and China, thanks to the ready availability of ultrasound and abortions. Choosing the traits of one's offspring is already happening.
3. I wonder if a child with toxoplasmosis would have survived its first year, say, 100 years ago. Our current era may be a historical anomaly where we are wealthy and advanced enough to care for the disabled, but not wealthy and advanced enough to prevent disability.
4. OK, so, we've had one Helen Keller. Does society need more to be further uplifted, or can we continue to draw on her inspirational example without seeing her condition inflicted on more people? If Sundman thinks we've overdrawn that reserve, he's a nutbar.
5. Even if we can genetically sculpt all our children to be the very incarnations of Greek gods, there will still be lots of disability for nutbars like Sundman to admire. People get injured. Shit happens.
posted by adamrice at 7:36 PM on October 24, 2003 [1 favorite]
Asparagirl, one possibility that intrigues me is human descended haplodiploids with eusocial societies like bees or ants. That's a bit far removed from the concern at hand. I do think designer children will go through a hell of a rebellious phase when their teenage years come. That'll be something to look forward too. It might be just creepy too, like the Babyheads in Jonathan Lethem's Gun With Occaisional Music.
posted by wobh at 7:39 PM on October 24, 2003
posted by wobh at 7:39 PM on October 24, 2003
John Sundman responds to critics of his articles "How I Decoded the Human Genome" and "One Vote for the New Eugenics"
posted by homunculus at 8:24 PM on October 24, 2003
posted by homunculus at 8:24 PM on October 24, 2003
Hmm... Up tilll now people were aborting fetuses just because they didn't want them, without the advanced knowledge of a potential condition. If a person or couple do not want a child with quality of life issues or even one with red hair, so be it. There are already far too many unwanted children out there who are frequently neglected and/or abused.
posted by LouReedsSon at 9:44 PM on October 24, 2003
posted by LouReedsSon at 9:44 PM on October 24, 2003
"If you've grown up around certain conventions, and they are all going to dissappear, that is tragic."
Right.
Those children who grew up with slaves doing all the work for them and suddenly, after the Civil War, had to work for themselves...why, that was a tragedy.
WHO'S A'GONNA PICK MY COTTON?
/exaggeration
posted by mr_crash_davis at 9:58 PM on October 24, 2003
Right.
Those children who grew up with slaves doing all the work for them and suddenly, after the Civil War, had to work for themselves...why, that was a tragedy.
WHO'S A'GONNA PICK MY COTTON?
/exaggeration
posted by mr_crash_davis at 9:58 PM on October 24, 2003
Sundman's most reasonable concern, I believe, is over how insurance companies will use these new technologies. Will we have to get screening in order to get insurance? Will people with "preexisting genetic conditions" be ordered to have gene therapy on their fetuses to avoid bills for a severely disabled child?
posted by Charmian at 12:47 AM on October 25, 2003
posted by Charmian at 12:47 AM on October 25, 2003
I'm a bit dissapointed. Here we are, the first species ever to have the opportunity to determine our own genes - truly mind over matter. But everyone (with a few notable exceptions) only see the possible dangers - what about the positive possibilities? Come on people, where's your imagination?
I look at it this way:
I have my genes, I've tried them and tested them thouroughly for half a lifetime. I know what they can and cannot do - so before I hand them over to my children, I'm going to remove a few defects.
A third arm would be neat, too.
posted by spazzm at 1:31 AM on October 25, 2003
I look at it this way:
I have my genes, I've tried them and tested them thouroughly for half a lifetime. I know what they can and cannot do - so before I hand them over to my children, I'm going to remove a few defects.
A third arm would be neat, too.
posted by spazzm at 1:31 AM on October 25, 2003
"How long before people with children with Down Syndrome will have to abort their children, not because theyw ant to, but because programs to support such parents have all been cut?"
I'd say that it's more likely that children with special needs recieve adequate care if there are fewer of those children to compete for the resources allocated to such needs.
But maybe I'm overly naive and in reality retards will be put out in the forest to die once the size of their lobbying organization falls below a certain threshold.
posted by spazzm at 1:36 AM on October 25, 2003
I'd say that it's more likely that children with special needs recieve adequate care if there are fewer of those children to compete for the resources allocated to such needs.
But maybe I'm overly naive and in reality retards will be put out in the forest to die once the size of their lobbying organization falls below a certain threshold.
posted by spazzm at 1:36 AM on October 25, 2003
But kids are already (on average) more "perfect" than they used to be, due to advances in pre-natal and infant care and increased knowledge about nutrition and health. Does telling pregnant women not to drink mean we wish all the fetal-alcohol syndrome babies had never been born?
posted by JoanArkham at 7:13 AM on October 25, 2003 [1 favorite]
posted by JoanArkham at 7:13 AM on October 25, 2003 [1 favorite]
Don't forget us gay and lesbian folk (a la Twilight of the Golds). Kristof has an interesting op-ed on the growing evidence of genetic components to homosexuality today in the NYT: Some welcome these studies because they confirm their own feeling that sexual orientation is more than a whim. Others fret that the implication is that homosexuals are abnormal or defective--and that future genetic screening will eliminate people like them.
posted by amberglow at 9:29 AM on October 25, 2003
posted by amberglow at 9:29 AM on October 25, 2003
Interesting thread. While checking for more info on the net I've found this list of diseases (Disclaimer: I don't work for the company that did the list, neither do I recommend or not recommend asking for their assistance) that may be trasmitted by DNA. According to the markers of the list, DNA tests or particular laboratory tests exists for the diseases that appear in the list. I guess that making a pre-conception check on all the disease listed (if possible) would give the parent the opportunity of making an informed decision before conception ; better then the natural "let's roll dices and see what happens" IMHO.
posted by elpapacito at 5:33 PM on October 25, 2003
posted by elpapacito at 5:33 PM on October 25, 2003
In other news, I took a mitochondrial DNA test today--but for genealogy purposes.
Swabbing the inside of your cheek with a plastic straw for 60 seconds really isn't as much fun as it looks.
posted by Asparagirl at 10:14 PM on October 25, 2003
Swabbing the inside of your cheek with a plastic straw for 60 seconds really isn't as much fun as it looks.
posted by Asparagirl at 10:14 PM on October 25, 2003
how weird aspara--how can it determine your family tree if everyone else hasn't done it?
posted by amberglow at 10:39 PM on October 25, 2003
posted by amberglow at 10:39 PM on October 25, 2003
From the list elpapacito linked to, I'm wondering if the xylophone puppet girl has Angelman Syndrome.
posted by emelenjr at 6:52 AM on October 26, 2003
posted by emelenjr at 6:52 AM on October 26, 2003
amberglow- It's going to be compared to everyone else already in the database, plus I can be kept abreast of any matches that show up in the years to come. People submitting their results to the database can also choose to list where their ancestors came from, so over time, ancestral migration patterns can be mapped. The particular test I did only tests for *female* ancestors' DNA since I have no Y chromosome to test (luckily :-) ).
So no, it probably can't tell me the name of my great-great-great-grandmother or anything like that, but if it tells me that my closest match (within one mutation) is someone from, say, Hungary, a country where I don't know of any relatives, that's pretty neat. But the neatest use for it is for adoptees like the last testimonial on this page, who have no idea about their ancestors' background at all, and found it out through having their DNA compared to the closest matches in the database. I may not get much usable information back from taking the test, but maybe someone else will by using my results!
posted by Asparagirl at 7:11 AM on October 26, 2003
So no, it probably can't tell me the name of my great-great-great-grandmother or anything like that, but if it tells me that my closest match (within one mutation) is someone from, say, Hungary, a country where I don't know of any relatives, that's pretty neat. But the neatest use for it is for adoptees like the last testimonial on this page, who have no idea about their ancestors' background at all, and found it out through having their DNA compared to the closest matches in the database. I may not get much usable information back from taking the test, but maybe someone else will by using my results!
posted by Asparagirl at 7:11 AM on October 26, 2003
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The desire of some deaf parents for a deaf child continues to baffle me.
posted by daveg at 12:22 PM on October 24, 2003