Nick Gillespie | July 26, 2006
BusinessWeek has a great and moving piece discussing the implications the implications of increasingly refined and effective means of screening embryos. The article is penned by "one of the dwindling number of women who receive a prenatal diagnosis of Down syndrome and choose not to terminate our pregnancies."
I would not want scientists to stop delving into the mysteries and wonders of the human genome. I am glad that I knew my son had Down syndrome before he was born. If one of these scientists found a "cure" for my son's Down syndrome, I almost certainly would give it to him. But I will admit that I would pause beforehand. I would think hard about this real-life conversation between a teenager with Down syndrome and her mother. The daughter asked her mother whether she would still have Down syndrome when the two were together in heaven someday. The mother, taken by surprise, responded that she thought probably not. To which her daughter responded, "But how will you know who I am, then?" And I would also think hard about whether the world would really be a better place without my son's soft, gentle, deep, almond-shaped eyes.
Whole thing here. It's easy to say that, at some point, it will be possible to cure many diseases in utero, but it's also true that what counts as "normal" and "abnormal" will change over time, so parents will always have choices to make, even or especially in an age of "designer children." In any case, it was striking to read an article that is not archly ideological but rich in human experience.
Hat tip: John Derbyshire over at The Corner.
Reason's forum on human enhancement touched on many related issues. That's online here.
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That was the most moving article I've read in a long time. I say
that as a woman who had amnio for both pregnancies with the
definite intention of having an abortion if the tests had found
Down's. (Both tests were fine, and I am now the mother of two --
well, genetically anyway -- perfectly normal boys.) I have to say,
though, that because I'm a coward doesn't mean anyone else should
be. It certainly doesn't mean that anyone should be slinging around
names like "genetic outlaw." She had a baby; she didn't commit a
crime.
The one anti-abortion argument I respect a lot says that we are
using pregnancy termination as an easy fix for a problem we need to
address more carefully -- that of curing the disability or finding
a place for the disabled in society. I have no idea how to even
begin on that task, but the discussion this article is going to
spark should help.
in the '60s I used to help my mother run a nursery during church services. One of the kids had Downs Syndrome and forty years later I still have this vivid image of him aimlessly swinging a plastic jack-o-lantern. I wish I remembered his name; he was a sweet kid.
"The daughter asked her mother whether she would still have
Down syndrome when the two were together in heaven someday. The
mother, taken by surprise, responded that she thought probably not.
To which her daughter responded, "But how will you know who I am,
then?" And I would also think hard about whether the world would
really be a better place without my son's soft, gentle, deep,
almond-shaped eyes."
What the everliving fuck is wrong with these people?!
Your kid suffers from a disease, and you think this makes him some
kind of Precious Moment�?
mediageek,
Your kid suffers from a disease, and you think this makes him
some kind of Precious Moment�?
Our histories, including our illnesses. make us who we are. My
right eye was gouged out by birthing tongs during my delivery which
left me without stereoscopic vision. It has shaped my life in many
ways. For example, as a child I had great difficulty playing any
sport that involved a ball flying through the air because I cannot
accurately judge distance. This made me last picked for teams and
generated the typical emotional distress.
However, if I could go back in time and prevent the injury I would
not do so. For better or worse, the eye helped make me who I am
today. Without it I most likely would have been an athlete like all
my age-peer relatives instead of spending so much of my youth
reading. My personality might have been much different.
Likewise, Schiltz's daughter understands that her genetic defect
made her the person she is. Without it, another personality would
exist.
mediageek,
[i]What the everliving fuck is wrong with these people?!
Your kid suffers from a disease, and you think this makes him some
kind of Precious Moment�?
Comment by: mediageek at July 26, 2006 02:00 PM[/i]
That's part of why she wrote the article, because so many people
nowadays think it's absolutley horrifying that you would allow a
child to live with such a "disease" or to treat it as something
other than an abomination.
I have two reasons why I'm against the whole eugenically-minded
attitude of "why allow someone to live with that kind of disability
and aren't you abusing your child allowing them to live that way"
because first my cousin is mentally retarded, and I would not want
to disappear just because she makes other people feel
uncomfortable. No, she cannot be a full-member of society and that
is unfortunate, but there are things that make her a unique
individual that seperates her from "normies", such as that her lack
of intellegence does make her innocent and therefore a very sweet
and happy person.
I guess that makes her a "Precious Moment" or something, but I can
say that her life does have a value other than being another
working body that the government can tax.
And second, when we start with that kind of attitude, then what
about that good ole' slipper slope. With my Ankylosing Spondylitis,
I have a HUGE personal stake in making sure "cripples" like myself
and others aren't "reducted".
I think your reaction is normal in that why would someone find
somehting crippling to be a cause of happiness, but is this woman
causing her child abuse? My answer is no, since she cannot cure her
child of Down's, I cannot see why it's wrong to make lemonade out
of lemons...
Sorry, I gotta run, I'll check back in later...
It's possible that in the intermediate future they will develop
the ability to cure a genetic disease like Down's Syndrome, and
this woman would have serious qualms about curing her offspring* to
the point of denying him treatment?
Nothing is wrong with that?
Note, I didn't RTFA.
*As a fetus or after it's born. Makes no difference.
Why do you think you'd be less of a person with two eyes. At the very least wouldn't you, all tings being equal, expect that you would be Shann + 1 eye?
I'm with you mediageek, this is ridiculous!
Schiltz's daughter understands that her genetic defect made her
the person she is.
Yes, and it makes her a person who struggles to think and act
normally on a daily basis! I wonder about your psychology, Shann,
that you wouldn't fix a serious flaw in your vision because you're
afraid you "may" have turned out to be someone else.
This all just sounds like a bunch of "you must suffer to grow"
nonsense.
Without it I most likely would have been an athlete
I don't have any limitations and have a lot of athletic ability; I
still read, because at heart I am a nerd. To think that a deformity
was so instrumental in your personal development is giving
weaknesses too much credit.
This is like saying that you don't want your kid to get glasses because you think it is cute when he squints.
I think at least some are missing the point about where the
ability to test for genetic abnormalities, diseases or syndromes
will take us as a society...that how we deal with them will only
get more complicated...not less and the "answers" (such as they
are) will get harder, perhaps (at least for some..if not many),
rather than easier.
Those answers will also force us to further consider how, why and
what we value.
A close friend of mine just gave birth to her 3rd child. He is
Downs. She opted not to have genetic testing or a Level 2 sonogram
despite being in her late 30s (Downs is heavily associated with
mothers of advanced maternal age - 35+).
She is Catholic and - though she has not said - I think she
probably did not want to be tempted to do anything against her
faith or that she might have regretted regardless of her
faith.
Needless to say, it has my wife and I considering our own desires
for more children and how we would handle being in the same
situation.
Just an anecdote:
I knew a guy with Down's Syndrome when I was a boy. He was one of
the nicest and funniest human beings I've ever known. His
impressions of Nixon and Carter were downright hilarious. (This was
the late 70s.) He was a happy guy. I think the world was a better
place while he was in it.
"I don't have any limitations and have a lot of athletic
ability; I still read, because at heart I am a nerd. To think that
a deformity was so instrumental in your personal development is
giving weaknesses too much credit."
I had a great friend, Richard John Roisum (he died in 1988) that
only had one eye and like Shann, loved sports. Nevertheless, he
wouldn't participate in them because of concerns of losing the good
eye too.
So instead, he became the sports editor of his high school paper.
His writing style was fantastic and he won him some state level
journalism awards.
Had he been able to play baseball, football, etc., there is no way
he'd have had the time to learn to write as well as he did.
Richard John Roisum, RIP
Gee! Maybe we could whack every kid in the back of the head with a hammer and turn them into sweet, lovable, little half-wits!
I don't have a problem with a parent that chooses not to abort a
DS child. I'd be less happy if there were a cure and the parent
chose to withhold it. And what about a parent that chooses to
deliberately have a DS child? Although some of these situations
make me squirm, I think leaving the decision in the parents hands
is the only conscionable alternative. I do however place limits on
parental rights, I don't think we should allow parents to abuse
their children. Deciding when something rises to the level of
'abuse' and when it's permissible to interfere with parental
autonomy, is perhaps the most difficult question in libertarian
philosophy.
This reminds me of deaf people that think deaf children should not
be treated. I've heard similar grousing from the midg.. I mean
dwar� I mean Little People (sounds even more demeaning if you ask
me, but what do I know)
mediageek,
Reading the article might help.
The portion you quoted contained two distinct elements.
The first between a mother and her daughter with Down syndrome.
They were discussing heaven, something I personally don't believe
in. However, enough people do, and appear to benefit in this life
from their belief (and who knows, maybe they'll benefit greatly in
an afterlife), that I wouldn't say that there's something wrong
with them for believing in heaven. Such belief does introduce
questions like whether the child will have Down syndrome and have
the facial characteristics of someone who does.
What is wrong with that?
The second was the author's own voice that she would indeed cure
her son if given a chance, but that in some ways she knows he would
be a different person and she already knows and loves the person he
is. She did not go out of her way to create a child with Down
syndrome; she chose not to terminate the eight cell embryo that was
likely to be born as a child with Down syndrome. I would have, but
that makes our choices different; it doesn't make her choice
wrong.
JC,
You're misreading what she's written. She is not saying she
wouldn't cure her son; she's saying exactly the opposite.
Additionally, when she's mentioning her son's "soft, gentle,
deep, almond-shaped eyes", she's not talking about the world
losing a particular facial characteristic, but about the world
losing a particular person.
Ayn_Randian,
"I don't have any limitations" that you see.
madpad,
I hope the ability to test genetics won't take us anywhere "as
a society", because what people do with the knowledge should
be an individual choice. Some will defer to their religions,
everyone will bring his own experience and thoughts.
It's one thing to say "yeah, I'd have the kid anyway and love
him/her", and it's another ball of wax entirely to glurge about the
wonder of debility and how it just works out to make peoples' lives
better...
My step-father wanted - really, really wanted - to become
a pilot when he was younger. He couldn't, because of his poor
eyesight. When he told me about this, he didn't see it as some
sublime, hidden blessing, but as a regret.
Due to congenital heart problems I had, my mother spent most of the
first year of my life taking me to doctors and not knowing whether
I'd live to be a one-year-old. A lot of fear and worry there, but
no warm and fuzzy closure beyond, "they got a break, and the baby
lived".
All us mutants must naturally cluster or something, but I've had a
lot of friends from childhood on with some congenital disability or
disease, whether phsyical or mental, minor or serious. I've
never known a single one who told me
"Gee, I'm glad I have this problem and wasn't born without
it."
mediageek and Ayn Randian bring to mind the "deaf culture movement" (or whatever it's called) whereby some deaf folks get all in a tizzy over parents seeking to get their deaf kids cochlear implants.
mediageek
If you could screen embryos and were able to weed out those that
would grow up to become assholes, would you have made it?
I'm only half kidding
mediageek
If you could screen embryos and were able to weed out those that
would grow up to become assholes, would you have made it?
I'm only half kidding
Comment by: anon2 at July 26, 2006 03:51 PM
Anon2,
Spot on. I was going to say something like that, but a lot longer
and crappier. Thanks :)
IMAO, more problems are generated by the children of poor/badly
educated parents than the relativly small number of chidlren with
birth defects. Those families who are poor for several generations
will probably stay poor and so cost society through being arrested
and needing the care of by the state, costing $$$$$$$$.
If that is assumed, then we'll have come back full circle to the
eugenicist movement, exhorting the poor to stop having kids. And
why stop there when there are so MANY ways to make society better
than fighting the non-ending battle against the poor...
Why, I can just see my friendly next-door utilitarian telling me
how much $$$ will be saved for society if I just "reducted" all
those kids I might have with HLA-B27, because all they are is just
wasting $$$ that could be used to build buildings and invest in
investments and all other great and stirring things!
Lovely.
"This all just sounds like a bunch of "you must suffer to grow"
nonsense."
wait, are you serious?
i don't think the tone of his post was "we must all suffer for our
art" or whatever, but simply that because of the accidents and
incidents of his life, he became the person he is today. and he's
content that things happened as they are. is that difficult to
grasp?
if you can't travel back in time (assuming you don't kill your mom
by accident or something) then you gotta live with what's happened.
and sometimes, shitty things make us who we are, for worse and
sometimes for better.
It's funny....and very, very, sad...
Mankind has struggled against a multitude of diseases and
congenital handicaps (both mental and physical)since hominids
evolved self-awareness. I find it ironic (and pathetic) that just
as we are developing the science to eliminate or alleviate these
ailments, some people feel the need to cling on to their condition
as if it were a lifestyle choice while so-called bioethicists
lecture us on who we should be happy with misery because "who are
we to play God?" (e.g. Remember the article a couple of years ago
about the "Deaf Culture" and their obstinate opposition to ear
implants?) Granted, as a able-bodied mentally functional (with a
few admitted emotional problems)adult, I could never appreciate the
experiences that those who aren't, but I can't imagine
wanting to be handicapped for sentimental or ideological
reasons.
Over the years, I've had a lot of contact with mentally handicapped
people. (No joke.) Whether it's autism (that is, if autism is a
functional condition rather than a developmental one) or Downs
syndrome, I would not wish that condition upon my worst enemy. I
can not contemplate not being capable of using function "normally"
in society with full use of my mental faculties. I feel for those
people. I knew an autistic child at my grade school who spent most
of the day screaming and carrying, unable to interact with people
at no real level. In fifth grade, I knew mentally retarded children
who were trying to grasp the alphabet while I was reading A
Wrinkle In Time. If it were in my power to do so, I would take
away their ailments so that can understand and learn as "normal"
humans do. Maybe that makes me arrogant and a "eugenicist" in the
eyes of some "bioethicists," but I would argue that it is not
ethical to rob human beings of their true potential. The freak
happenstances of biology should not be an impediment.
"She is Catholic and - though she has not said - I think she
probably did not want to be tempted to do anything against her
faith or that she might have regretted regardless of her
faith."
Nice how she transfers the costs of her faith and/or fears to
another.
"*As a fetus or after it's born. Makes no difference."
The real question is whether Mediageek would take the cure for his
problems if it were offered. They are glaring to most of us, but he
probably doesn't see them that way. He may consider his current
state of being (the result of his genetic make-up developing along
his personal historical path) as part and parcel to who he is. He
might think that he doesn't need to be fixed to deserve or
respect.
But then has trouble understanding complex topics and the
perspectives of others.
At least he has some company.
"I don't have any limitations"
That's funny.
madpad, I don't understand...do I remind of the "deaf culture"
folks or the ones who think they are idiots for denying their
children a chance to correct a defect?
'Cause I think they are idiots.
"*As a fetus or after it's born. Makes no difference."
The real question is whether Mediageek would take the cure for his
problems if it were offered. They are glaring to most of us, but he
probably doesn't see them that way. He may consider his current
state of being (the result of his genetic make-up developing along
his personal historical path) as part and parcel to who he is. He
might think that he doesn't need to be fixed to deserve our
respect.
But then has trouble understanding complex topics and the
perspectives of others.
At least he has some company.
"I don't have any limitations"
That's funny.
I don't think the writer means to advocate against curing disabilities. She tries to make the point that we're not really thinking about what we're doing. This is a more subtle point than the usual Leon Kass position that somehow misery is essential to humanity. One of the commenters pointed out that frequently genes that are catastrophic when you have two of 'em are beneficial with one, sickle - cell being the signal example. I thought of bipolar disorder and severe depression, which appear over and over in the families of creative geniuses. My uncle (by marriage, not a blood relation) was bipolar and committed suicide. His condition caused his family untold misery, but it seems also to have given them truly astonishing creativity and talent, including, oddly, talent for investing in the stock market. Would they have been better off without that particular genetic sword of Damocles? I don't know and wouldn't dream of speculating what they think. I do believe, however, that this is a subject worthy of a better discussion than we've given it.
.5b - I agree with your father. I wanted more than anything to
be a pilot but couldn't because of my eyes. If I could have changed
that, I would have donated a frickin' kidney or something.
I do agree with the sentiment that it's ok not to abort and to
raise the child if there is no cure for the problem. I wouldn't
choose that, I would rather abort, but that's me, and that may be a
selfish attitude on my part. But if you could cure it, and didn't,
that would bother me. Although again, that's my personal opinion.
I'm not sure I have the right to force someone to agree with
me...
Karen, just to clarify, are you seriously asking whether your
uncle would have been better off without a mental illness that let
to him committing suicide?
At a guess, I think we've got his vote.
Akira,
"but I would argue that it is not ethical to rob human beings of
their true potential. The freak happenstances of biology should not
be an impediment."
While I sympathize with your position, I think the element you are
missing is the difficulty involved in defining what that true
potential is, or which parameters of ability matter and which
don't.
There is an underlying assumption here that Down's Syndrome= misery
for child & family. It is a false assumption. Same goes for the
Deaf culture debate. (FYI, I have worked in the field for over 15
years with all types of disability)
The fact of the matter is, is that all of us have serious
differences in the way we approach the world. Some matter, some
don't, some cause us misery, some cause us success or happiness. It
is truly difficult to tease apart which factors are which making
the question asked by the article one worth considering carefully.
I have met children with profound disabilities that are a true
asset to the world, and not because of the contrast they provide to
the more conventially talented among us, or because of the
challenge they presented to our humanity, but because they were
great people. Part of who they were, however, may have been
inextricably bound up in the "disability" that others so easily
used to encapsulate who they were.
It ain't a black and white issue. Not by a long shot.
Karen, I'd say there's a difference between eradicating brain eccentricities, like those of a creative genius who happens to be mad, versus eradicating out-and-out flaws. There's plenty of room for debate about whether it's good or bad to have a perspective that lets you create great art but makes it impossible for you to have friends, but who would seriously and sanely argue that having abnormally low Down's-syndrome-style intelligence is a good thing?
Eric, sorry for the confusion, and no, absolutely it would have been the best thing possible for my uncle to be cured, for him and his family. My point is that there is some correlation between having the gene for the disease that killed my uncle and having unusual creative gifts. My one hesitation about genetic cures is that we might be eliminating something really valuable along with the bad traits. That having been said, I can't see any problem with cures that don't affect the germ line.
There's a book, "Choosing Naia" by Mitchell Zuckoff, that came out a few years ago--a non-fiction account of a couple who chooses to have a child who's been diagnosed with Down's in utero. It wasn't a religious decision, and they're both pro-choice. Very moving (not schmaltzy) description of a tough decision. BTW, I've met Naia, who's now 6 years old--she's a pleasant little girl whose parents and siblings love her very much. All children change your life profoundly; 'normal' kids can easily have issues down the road that are much tougher than Naia's. And yes, I'm ardently pro-choice--that's pro-CHOICE not pro-abortion.
There's a book, "Choosing Naia" by Mitchell Zuckoff, that came out a few years ago--a non-fiction account of a couple who chooses to have a child who's been diagnosed with Down's in utero. It wasn't a religious decision, and they're both pro-choice. Very moving (not schmaltzy) description of a tough decision. BTW, I've met Naia, who's now 6 years old--she's a pleasant little girl whose parents and siblings love her very much. All children change your life profoundly; 'normal' kids can easily have issues down the road that are much tougher than Naia's. And yes, I'm ardently pro-choice--that's pro-CHOICE not pro-abortion.
If a treatment for Down's syndrome, that enables children with
that condition to live normal lives, ever becomes available, I'd be
all for it. Without question, it is better to be "normal" than to
be retarded.
Unfortunately, we do not currently have that option. The question
now is, is it better to be dead -- the result of the usual
"treatment" after detection in the womb -- than to be retarded?
Jennifer,
A lot of things are good or bad in comparison rather than as
absolutes. Take intelligence, for example. There are enough people
who have much higher intelligence than I, that were they all to be
in one place and I were added to the mix, I'd have abnormally-with
respect to the group-low intelligence. It wouldn't bother me, nor
would it bother, I suspect, my parents.
I have yet to read a single article or comment that suggests anyone
is arguing that having abnormally low Down syndrome intelligence is
a good thing. What is being discussed is whether it's a
sufficiently bad thing that the person shouldn't be born at all. So
the comparison isn't Down syndrome intelligence versus normal
intelligence, but Down syndrome intelligence versus
non-existence.
Preimplementation genetic haplotyping wasn't available when my wife
and I went through in-vitro (five times, two successful). If it had
been and we were told that some of the eight cell embryos had DNA
that was going to cause Down syndrome, I'd have recommended that
they be destroyed. We were given the option of amniocentesis, but
neither of us would have elected to abort a second trimester fetus,
so we chose not to have the test done.
The author elected to have her eight cell embryo haplotyped, found
out that he would have Down syndrome and elected to implant the
embryo anyway. Down syndrome is sufficiently well understood that
the author probably has good reason to believe that her child will
have a high quality of life. Undoubtedly it will be a different
life than a non-Down syndrome child will have, but differences
aren't inherently wrong.
Now, maybe if I were the smartest person in the world, I'd see
things differently and think that anyone who was less smart than I
shouldn't have been born. Except that's not what you're
saying. You've asked "who would seriously and sanely argue that
having abnormally low Down's-syndrome-style intelligence is a good
thing?" and the answer is "nobody, so far."
Eric, sorry for the confusion, and no, absolutely it would
have been the best thing possible for my uncle to be cured, for him
and his family. My point is that there is some correlation between
having the gene for the disease that killed my uncle and having
unusual creative gifts. My one hesitation about genetic cures is
that we might be eliminating something really valuable along with
the bad traits.
Fair enough, Karen, and thanks for the clarification. I think you
have a reasonable concern, but I'd rather we worry separately about
preserving or restoring valuable genes than considering that
concern a reason not to address harmful genes.
"If you could screen embryos and were able to weed out those
that would grow up to become assholes, would you have made
it?"
If it meant I never had to put up with statements like the
above?
Hue betcha.
"If you could screen embryos and were able to weed out those
that would grow up to become assholes, would you have made
it?"
If it meant I never had to put up with statements like the
above?
Hue betcha."
That's what it would mean, but not for the reason you imply.
A fellow weed-ee
I think Schiltz is concerned that "you can choose to abort
genetically damaged fetus" rapidly seems to evolve to a cultural
"you should abort" and then perhaps on to a legal "you must abort."
Also, she worries that as people with genetic damage grow rarer,
people will begin to view those that remain as monsters.
Nothing she advocates suggest that she opposes curing any diseases.
I think she worries about how we respond unconsciencously to the
changes technology makes possible. Instead we should think
carefully how we respond such that "can" doesn't turn into
"must."
By the way, Shann above is me. My name got truncated for some
reason.
"He may consider his current state of being (the result of
his genetic make-up developing along his personal historical path)
as part and parcel to who he is. He might think that he doesn't
need to be fixed to deserve our respect."
"But then has trouble understanding complex topics and the
perspectives of others. "
Oooh, look at you, with your multisyllabic attempts to
call me stupid whilst appearing sympathetic at the same time.
I have to wonder if you're half as much of an insufferably
condescending pseudo-intellectual prig in real life.
"I have to wonder if you're half as much of an insufferably
condescending pseudo-intellectual prig in real life."
Yep. At least half, maybe more.
"That's what it would mean, but not for the reason you
imply."
I'm fully aware of what the original poster was implying.
So far I haven't seen any responses concerning the costs to society (taxpayers) to support the disadvantaged. As long as I'm paying for their support in any way, I'd say that we should also have some say in that. I'm all for parents having the choice of terminating a potential bad out-come fetus or for bring the kid to full term, but I also think the same parents if they chose to bring the kid to term should bear the costs of supporting it.
"Yep. At least half, maybe more."
Christ, no wonder you're so afraid of getting shot.
Mediageek,
"He might think that he doesn't need to be fixed to deserve our
respect."
By the way. In case you missed it, the comment was really aimed at
your lack of respect for others, not your intellect. A parody of
your position, as it were.
"Christ, no wonder you're so afraid of getting shot."
Says, the man who needs a gun under this shirt to feel safe in the
world.
LoL ;~)
"A parody of your position, as it were."
For future reference, try not to forcibly sodomize the meaning of
the word "parody," mmmkay?
Mediageek:
For future reference:
Websters--
Parody: a feeble or ridiculous imitation.
So what about the issue at hand? Have anything to add to the
discussion aside from your original disdain for the article you
didn't read?
Would you honestly give a fuck if I did, or are you just being a patronizing asshole?
Anon2
"What is being discussed is whether it's a sufficiently bad thing
that the person shouldn't be born at all."
Actually, there is also the issue of whether a condition that is
essential to how a person is defined should be cured even if that
makes them into, essentially, a different person. It is the
"Flowers for Algernon" question... from where does the person's
worth eminate? Is it a superficial, measurable trait (like Down's)
or is it more latent and difficult extract from the complex that
makes a person who they are.
"Would you honestly give a fuck if I did, or are you just being
a patronizing asshole?"
Sure I would. You were the first one to claim that this is a
non-issue, but admitted to not reading the article. Since you've
read the thread, I am guessing you might have thought of the issue
a bit since. Did your position change?
I assume that the knee-jerk reaction wasn't your final take on the
issue (although, thinking about your previous posts... I seem to
remember being called a liar when discussing my personal experience
on a topic...maybe your knee-jerk reactions are all you've got. You
could prove me wrong, quite easily).
See, there you go.
You *almost* reel me in, and then throw out some backhanded comment
that just gives me the desire to sling insults at you rather than
actually consider that you might have a point.
I wonder how far all this will go.
I think that people with IQs less than 120 are a waste of
resources. Will there be people with power in the future that think
the same? Will they use their power to eliminate all those
dummies?
Disability is a relative concept.
"See, there you go.
You *almost* reel me in, and then throw out some backhanded comment
that just gives me the desire to sling insults at you rather than
actually consider that you might have a point."
Okay. Here's one with no "backhanded comment."
Has your position changed on the topic at hand after further
consideration?
You know, I really don't see why the discussion of the above issues has to be as complicated (nuanced?) or as confused as it is on this thread. I think it's actually very simple; just answer this question: Would any of you like to trade places with the child? Would YOU like to have Down Syndrome? No? Then how dare you suggest that it is okay for someone else to have it? How dare you suggest that it is okay for someone to inflict that sort of life on someone else?
Eric,
I have nothing to take up with Shannon Love, because I understand
where he's coming from. Apparently he's happy where he is today,
despite not having sight in two eyes. He doesn't know what he'd be
like today were he to have had stereoscopic vision. He's taking a
known-good position and holding it.
When I was nineteen, I
did something stupid. (It wasn't the first time, nor is it
likely to be the last.) The net result is that I have three kids,
two of which (twins) were conceived from donor eggs. I love my wife
greatly and I really wish that we had been able to have used her
eggs for all three of our kids.
However, realistically, had I not been so pig-headed as a kid, even
if you assume the rest of my life would have remained the same and
the only difference is that our three children would now have the
same biological parents, I don't know that I'd choose to push a
button that would pop me into such an alternate reality, because I
love the three kids I have. They're "known good." The hypothetical
kids might be, in some sense better, or might be worse, but I don't
lose any sleep over it and I'm actually quite happy with our
situation.
Shannon Love appears to be happy with his life. Yay. I wish you the
best with yours.
"How dare you suggest that it is okay for someone to inflict
that sort of life on someone else?"
The question is, does the person feel like their life has been
inflicted on them? I somehow doubt it.
"How dare you suggest that it is okay for someone to inflict
that sort of life on someone else?"
The question is, does the person feel like their life has been
inflicted on them? I somehow doubt it.
Comment by: MainstreamMan at July 26, 2006 07:29 PM
No, the question is the one that I asked. Why don't you answer
it?
jw -
So what about an answer? No, I wouldn't trade places with someone
with Down's syndrome nor would I trade places with someone making
half my salary with no prospects for increasing their income in the
future.
Then how dare you suggest that it is okay for someone else to
have it? How dare you suggest that it is okay for someone to
inflict that sort of life on someone else?
Are you the final arbiter of ok people? What do with do with non-ok
people?
And exactly who said it was ok to "inflict" this on someone
else?
From what I understand about the disease, which is admittedly very
little, it's not like the parents where carrying around vials of
military grade DS disease with the hopes of "inflicting" their next
child with it.
jw,
So your assertion is that nobody who you wouldn't trade places with
should be born? You may be sincere in thinking that your question
is insightful, but it's merely inciteful. However, if it helps
answer your question, I wouldn't like to trade places with you.
jw,
Would YOU like to have Down Syndrome?
If the only other option is being snuffed out in the womb, then
yeah.
Heck, I wouldn't want to live in Iraq either, so I guess that justifies us killing all those civilians. After all, if you wouldn't trade places with an Iraqi, that means you're a hypocrite if you don't want them dead.
"So your assertion is that nobody who you wouldn't trade places
with should be born? You may be sincere in thinking that your
question is insightful, but it's merely inciteful. However, if it
helps answer your question, I wouldn't like to trade places with
you."
Comment by: anon2 at July 26, 2006 08:05 PM
Well, if it isn't good enough for you, why is it good enough for
someone else? Apparently my question is "insightful" enough that
three of you so far have attempted to dodge it.
So you wouldn't like to trade places with me? You're insinuating
that I'm retarded or somehow mentally defective? Oh, that's cute.
Damn! That's so clever I almost didn't catch it,...half-wit that I
am. You might not want to be me, but at least I don't have to fuck
a test tube in order to make babies. What do you fuck the rest of
the time - your hand?
You want "inciteful", you can have inciteful.
jw,
Would YOU like to have Down Syndrome?
If the only other option is being snuffed out in the womb, then
yeah.
Comment by: crimethink at July 26, 2006 09:03 PM
Well at least you have the honesty to deal with the question - I'll
give you that much. But my point is this - you may have the right
to answer that question for yourself, but do you have the right to
answer it for someone else? Isn't the real issue the fact that NONE
of us have a say as to whether we are born or what kind of life we
are born into? Don't prospective parents have an obligation to
their children to consider such quetions? Is it moral to have a
child that will be severely handicapped or that will have to live a
life of privation and misery - just because one wants to be a
mother (or father), or because one wanted to get laid that Saturday
night? I don't think so.
Dude,
You might not want to be me, but at least I don't have to fuck
a test tube in order to make babies. What do you fuck the rest of
the time - your hand?,
that was unmitigated bullshit.
I work in a freakin' hospital, and of all the things that can go
wrong with people, Down's is not the one to get angry about,
especially considering that there are millions of normal children
out there who are savagely beaten and sometimes killed by their
parents.
And just what can be done about Down's? Since you act as if this
lady purposely made her child with Down's, that you must have some
brilliant scheme that will cure all those children...right?
But considering the intellectual worth of your last response, I can
safely assume that this wonderful cure probably won't be coming
from you.
Oh well, I guess I'll just have to wait for another one of your
retarded responses.
Oh! I'm sorry, did I hit a nerve? My bad...
The question is, does the person feel like their life has been
inflicted on them? I somehow doubt it.
Comment by: MainstreamMan at July 26, 2006 07:29 PM
So if the person isn't bright enough to know that he got the short,
dirty end of the stick, then it's okay? Hey, if I can cheat you out
of part of your money every month without you catching on, would
that be okay?
The question is, does the person feel like their life has
been inflicted on them? I somehow doubt it.
Comment by: MainstreamMan at July 26, 2006 07:29 PM
So if the person isn't bright enough to know that he got the short,
dirty end of the stick, then it's okay? Hey, if I can cheat you out
of part of your money every month without you catching on, would
that be okay?
Comment by: jw at July 26, 2006 09:56 PM
You know what would've been even cooler, if you told that stupid
woman to ABORT THAT ABOMINATION NOW!!!
If the abortion occured, no more kid with Down's. The kid doesn't
even freakin' exist! Why are you even trying to pretend that the
all the lady had to do was just get an abortion and then the kid
would be perfectly fine...the kid would not even EXIST!!
But, I guess that would assuage your conscience, retards really
just aren't fit for living, I mean, they didn't even know that
their existance automatically condemns their mothers as EVIL for
allowing them to live and whatnot...
Yes, that is a strawman, and no you don't deserve a better
response...
The statement from this lady that incited so much venom from
some us reads, again:
And I would also think hard about whether the
world would really be a better place without my son's soft, gentle,
deep, almond-shaped eyes.
If you have to CONSIDER that the world, especially for your child,
might be a better place had there been a cure, or one were
developed, for someone with a tragically low IQ, well, then there
needs to be a cure for people like you as well.
Must restrain self...don't want to get thrown off of
H&R....
Short answer: the world would be a better place if your child did
not have Downs. That may sound elitist, but suck it up; it's the
truth and everyone knows it.
Dude,
You might not want to be me, but at least I don't have to fuck a
test tube in order to make babies. What do you fuck the rest of the
time - your hand?,
that was unmitigated bullshit.
Comment by: Frank_A at July 26, 2006 09:53 PM
Considering the bullshit remark that it was in answer to, no, I
don't think it was. If you or he can't take it, you shouldn't start
it to begin with,"Frankie".
As to what can be done about Down's? Real simple, Frank: if a woman
knows that she will give birth to a child with Down's, then she
should abort the pregnancy (providing she didn't wait until the end
of the 2nd trimester.) Or, if that offends her precious religious
sensibilties, maybe she shouldn't get pregnant at all, if there's a
likely chance of Down's. So she wants to be a mommy. So what? Alot
of people want alot of things.
Yes, there're many misfortunes that can and are visited on children
in this world, and Down's certainly isn't the worst birth defect to
have. But speaking as someone who has a thirty-something year old
cousin with it, I can tell you that it's no picnic either.
I don't care about abortion in this current debate; it's
irrelevant except to those who brought it up. What I care about is
that this woman said she would "pause beforehand" before giving her
child a cure for her DS. That, coupled with the fact this halfwit
cites her kids freakin' eyes as the reason is what makes
my blood rise.
Disclaimer: I don't have a lot of sympathy for people, for
emotional or religious reason, who deny their kids healthcare.
Hence my disdain for Jehovah's Witnesses, Christian Scientists,
Seventh-Day Adventists, the Amish and the flippin' idiot quoted in
the article.
Yes, there're many misfortunes that can and are visited on
children in this world, and Down's certainly isn't the worst birth
defect to have. But speaking as someone who has a thirty-something
year old cousin with it, I can tell you that it's no picnic
either.
Yeah, I got someone in my family who's mentally handicapped too,
but I'm not going to look down at my aunt and uncle because of
their "recklessness" in having my cousin...
And it's not like someone with Down's automatically doesn't have
sentience.
You can ask them directly, do you want to live?
Those who are intellegnt enough will most likely say yes.
Ask them, do you like life?
Those who are intellegnt enough will most likely say yes.
Why should/would I want to erase the existance of someone who wants
to live and loves life, and not only that, brings happiness and joy
to my family because of their existence in spite of the fact that
they do have a disability?
Not to mention, Down's mainly does not cause suffering for that
individual, so why is it so wrong for them to live?
The only people who feel bad who might feel bad are the caretakers
who have to spend the extra time and effort for their
children.
This just smacks of ye' olden days of Manicheism where it was
considered better for a child not to be born in this material world
full of sin and evil when they could live as pure spirits in the
ether...
And another thing, who gets to decide if someone isn't fit for
life?
Since my AnkSpond could be interpreted as "costing society" since
extra money is being spent for my medications and will likely be
spent when I need back surgery in the future, am I not a "problem"
for society? Wouldn't it have been better "investment" for my
parents to reduct me for another pairing of sperm and egg? Frankly,
things that smack of eugenics scare the crap out of me because my
"disability" might be considered somehting that needs to be "cured"
of, including the limitation of my reproductive rights.
Furthermore, what about people who have brain trauma and lose most
of their intellegnce? Are they automatically now considered just a
bag of meat that's better to be thrown away or at least be put in a
dark corner so no has to deal with them?
Some people may feel better off dead with a loss of intellegence,
but remember that people with Down's never even had that baseline
to begin with. Many cannot even imagine a different world with more
intellegence, just like a person who has lost the part of their
brain for sight or smell lose even the ability to recall what
anything looks or smells like...
I'm the father of a 3-year-old girl with Down syndrome. In our
case, we knew through prenatal testing that we were at higher risk.
We had a meeting with a "genetic counselor" who summed up the
various test results and risk factors, and estimated about a 6%
chance that our child would have Down syndrome. We were given the
option of more invasive testing to give us a definite answer, and
we chose against it. Terminating the pregnancy wasn't a legal
option by that time; but I don't think we would have chosen
differently if we'd been given the chance earlier. So the real
diagnosis didn't come until after delivery.
If we had the opportunity to reverse some of the effects of the
Down syndrome in my daughter, I wouldn't hesitate. I don't think
her Down syndrome defines who she is; I'd give anything for the
chance to see who she could be without it. On the other hand, I can
imagine some possibilities that might make it a harder choice. What
if the "cure" required painful procedures or therapies, with only a
chance of improvement? Suppose we could start over on a normal
development, at the price of losing everything she's gained up
until now? It would be painful to make that decision when she's
three; maybe impossible when she's ten. The simple fact is, she may
eventually be the happiest and most well-adjusted of any of us,
just as she is. She certainly has a much different future ahead
than her sister does, but I think her chances of a happy and
fulfilled life are as good or greater.
We certainly aren't sorry she's here, and I doubt very much she'll
be sorry she's here either, when she's in a position to consider
it. One couldn't by any measure argue that she's "suffering" from
her condition. There may be plenty of good reasons to consider
terminating a Down syndrome pregnancy, but "because it's kinder to
the child" isn't one of them, in my opinion.
I don't care about abortion in this current debate; it's
irrelevant except to those who brought it up. What I care about is
that this woman said she would "pause beforehand" before giving her
child a cure for her DS. That, coupled with the fact this halfwit
cites her kids freakin' eyes as the reason is what makes my blood
rise.
Disclaimer: I don't have a lot of sympathy for people, for
emotional or religious reason, who deny their kids
healthcare.
But she didn't even deny her kid healthcare because there isn't one
in the first place!
And you missed the whole part of
If one of these scientists found a "cure" for my son's Down
syndrome, I almost certainly would give it to him. Doesn't
this line make any difference or are you assuming she really just
wanted a Down's baby?
As for abortion, did you even try reading the article? This whole
article's purpose to defend herself from people who made claimed
she was a bad person for not getting an abortion! It's not like we
got that part of the discussion out of thin air...
Also, why is having some feelings of hesitation morally analagous
to forbidding getting your children blood products, like Jehova's
Witnesses?
Also, why is having some feelings of hesitation morally
analagous to forbidding getting your children blood products, like
Jehova's Witnesses?
Comment by: Frank_A at July 26, 2006 11:52 PM
Ok, let me rephrase that.
Why should it be morally analagous?
People can hesitate in making all sorts of good decisions or ones
that prevent them from doing harm/bad.
Are we to scold them for having a loss of confidence/backbone/etc.
?
I have heard too many stories of how a soldier can turn from a
Super-Marine-GIJoe training in the USA and then turn into a pile of
cowardice in their first experience of actual combat and then later
came up and did their job and did it well. Am I suppsed to call
them a coward even though they did their job?
I think that would be very unfair...
Look, the reason it's morally analagous is because this woman
said she would have to think about it! What's to think?!
To the parent "KaeZoo"...I can't understand what it would be like,
and I am glad that you're at least willing to say that you would
treat your child's deficiencies if given the opportunity. The only
quibble I have is when you wrote What if the "cure" required
painful procedures or therapies, with only a chance of
improvement?
That wasn't really the definition that I or most other people think
of as a "cure". But I can see your point; perhaps we should not
think of "Cure" here in the penicillin-for-gonorrhea sense and
think of it as radiation-for-cancer sense. However, when I wrote
what I wrote, I was on the penicillin definition; a simple pill or
injection.
I worked with numerous Down Syndrome people a number of years
ago. I didn't like a few of them very much - couldn't see myself as
friends if we didn't have to work together. With others, I keep in
touch to this day as they were wonderful, fun loving, funny people.
If I had the power to cure them of their syndrome would I do it? In
a heart beat. Would I snuff them out in the womb? Absolutely not. I
answer this way to both questions as I don't believe who these
people are can be reduced down to their syndrome. It is a part of
them, that does influence who they are, but does not totally
determine it either. In some cases, they would just be more
productive, witty, and fun loving than they already are. And the
asshole Down's people would still be assholes...I'm guessing
anyway.
I don't know how they would answer to the first question but my
guess is probably they would want to be normal as well. For the
second question, I am certain none of them would choose to have
their lives snuffed out simply because they don't have the same
potential as the rest of us.
I don't know how they would answer to the first question but
my guess is probably they would want to be normal as
well
Very good point.
The best thing would be to ask them if they WANT to be cured.
I don't know what age Ms. Schiltz child is, but if she truly does
love her child than if the child wants to change, she should allow
it to happen...
"So if the person isn't bright enough to know that he got the
short, dirty end of the stick, then it's okay? Hey, if I can cheat
you out of part of your money every month without you catching on,
would that be okay?"
And what if the person isn't bright enough to understand that Down
Syndrome is not equivilent to severe mental retardation? The range
of problems and disabilities varies from individual to individual.
The person with Down Syndrome is an individual with a personality
and awareness, intelligence, opinions, desires, an emotional and
sexual life.
As for your insightful question.
No. But I wouldn't want to trade places with anyone else either
since I am happy with who I am. That is the crux of the debate in
case you missed it. "Curing" down syndrome would not be like taking
away a few health problems. You would be talking about
fundamentally changing who that person is, and that may or may not
be the best course. It is certainly worth a pause to consider the
implications. I bet you'd be surprised to find that most people
living with Down Syndrome are pretty happy with who they are most
of the time (just like everyone else in that respect). As KaeZoo
nicely pointed out (thanks for the willingness to share in this
hostile environment, by the way) it is a misconception to believe
that children with Down Syndrome are suffering from their
condition.
Just as you don't suffering from your condition, I would guess. The
issue is as nuanced as this thread indicates, despite your
unwillingness to grant people with Down Syndrome and those who love
them moral room to contemplate the difficult questions. I hope you
never have to face them yourself.
Mainstream Man:
"Just as you don't suffering from your condition, I would
guess"
Isn't this basicly the same insult that you tossed at Media Geek
way up thread? MUST you recycle your obtuse little barbs - is that
really the best that you can do?
"And what if the person isn't bright enough to understand that Down
Syndrome is not equivilent to severe mental retardation?"
Which person are you refering to there? Myself? Is that supposed to
be another of your "intellectually brilliant" efforts at witticism?
Or are "geniuses" such as yourself so advanced above the rest of us
that you don't even know when you are being insulting? Just part of
the burden of having to deal with all your mental inferiors,
huh?
Either that, or perhaps you have a bit of a "condition" of your own
(how's that superiority complex and projection issues problem
working out for you these days? Do you think the Doctor will
release you anytime soon? What is his prognosis regarding your
reality-avoidance phobia?)
You know, most of the people (including myself) who read
Hit&Run and who post comments here are plenty bright - and
bright enough that most don't feel a need to prove it. If they were
not, they would not be interested in the topics discussed here. For
you to think or imply, as you obviously do, that your foggy,
er..."nuanced"... mind is somehow superior to any one of them would
be laughable under even the best of circumstances. As things are,
it is merely a misfortune for you,...and an embarrassment for the
rest of us to witness.
I think Media Geek called it pretty accurately way up-thread when
he refered to you as just a "patonizing asshole". And I think he
probably chose wisely in dismissing your remarks as unworthy of
further consideration. Likewise, I think that I, too, shall dismiss
them in the future. Frankly I've flushed better shit down the
toilette everyday of my life. Pity that you aren't as regular,
isn't it?
You mentioned something about disrespect for others' points of view
up-thread. If you were not so clueless, you might realize that the
same observation could be made concerning yourself. Comment, if you
wish - or if you feel that you must - but you'll elicit no more
response from me.
Oh! One last thing: if you don't want the Reason server to post
your comments twice, thrice, etc.? do not click on "Post" more than
once. I know people in your age group have "instant gratification"
issues, but DO be patient with the little Reason server. Your
frustrated jabbing at the Post button only confuses it. Click it
once and then give it time...it will post. It's just slow
sometimes. You know all about slowness, don't you?
jw.
Wow.
Did you just accuse me of being disrespectful.
Read some of your comments on this thread again.
Something about "If you or he can't take it, you shouldn't start it
to begin with..." seemed to come from one of the posters here...
hmmmm wonder who?
My saying you are not suffering from your condition is only an
insult if you consider your condition insulting (it does make my
statement untrue, but that's a different matter).
I have readily admitted to being a patronizing bastard. I never
claimed, however, to be smarter than anyone here.
How you doing with that self-reflection?
I don't mind attacking those who attack others.
I ain't too worried about your response or lack thereof.
As for insulting the intelligence of the H&R boards, I believe
you were the ones calling the topic a no brainer (then hurling
insults when people challenged your position).
I was defending the intelligence of the discourse.
PS. Love the poop humor. Keep it up...it suits you.
[My saying you are not suffering from your condition is only an
insult if you consider your condition insulting (it does make my
statement untrue, but that's a different matter).]
The true insult here would be that you are taking as a given that
either he or MediaGeek even has a "condition" and that you take for
granted that others will let your premise go unnoticed and
unchallenged. 'Tain't likely, McGee.
"The range of problems and disabilities varies from individual
to individual. The person with Down Syndrome is an individual with
a personality and awareness, intelligence, opinions, desires, an
emotional and sexual life."
Exactly right.
' "Curing" down syndrome would not be like taking away a few health
problems. You would be talking about fundamentally changing who
that person is, and that may or may not be the best course.'
Not sure about this. Is it really that the syndrome is fundamental
to who they are or just that it is influential? I take the latter
view. How influential is up for debate and also depends on the
individual with Downs, the degree of the severity of the
syndrome.
People with Down's, regardless of how high functioning they are, do
tend to be limited in terms of the quality and quantity of work
they can do compared to the quantity and quality of work they could
do if they did not have Down's. This does not mean their value as
people should be reduced down to this factor, any more than the
value of anyone else should be reduced down to the work they can
do, but it does suggest another factor in the decision of whether
someone should intervene to provide a cure in the womb if possible.
Perhaps a more important point is that people with Down's tend to
have shorter lfe spans, and there's a link as well to Alzheimers.
Knowing that, I would think a responsible parent, if they knew they
could provide a cure for Down's in the womb, would make that
decision.
"Perhaps a more important point is that people with Down's tend
to have shorter lfe spans, and there's a link as well to
Alzheimers. Knowing that, I would think a responsible parent, if
they knew they could provide a cure for Down's in the womb, would
make that decision."
Comment by: happenstance at July 28, 2006 01:09 AM
Yes! That IS an important point and one that no one else has
mentioned so far. People with Down's ARE known to have a shorter
average life-span. My cousin, being as old as she is, is at the
upper end of the scale and almost something of an anomaly; but
probably she will only barely outlive her parents.
Quite often they have any number of serious congenital,
physiological conditions. That right there tells me that they often
suffer - physically, if not necessarily mentally If it could be
prevented by some treatment in the womb, then it should be. For
those that argue that this would be "playing God"
I assert that doing nothing would equally be playing God.
Treatment or cure, yes. Abortion, fuck ya. Anyone who thinks that way should probably have been aborted for their own less than perfect selves.
Abortion, fuck ya. Anyone who thinks that way should probably
have been aborted for their own less than perfect selves.
Comment by: grimeyguttersnipe at July 28, 2006 04:49 AM
It's always been my view that the rabid anti-abortion crowd are
themselves one of the finest arguments in support of not only
abortion, but forced sterilization as well. :-)
Smartass,
I'm not against the right to abortion. I'm against the idea that
because someone is less than perfect, has some sort of syndrome,
defect, etc. they *necessarily* should be aborted. I favor
treatment, if available, but it doesn't follow from that that I
should favor abortion if treatment is not available, as none of us
are completely perfect either.
"Not sure about this. Is it really that the syndrome is
fundamental to who they are or just that it is influential? I take
the latter view. How influential is up for debate and also depends
on the individual with Downs, the degree of the severity of the
syndrome."
Influential is probably a better term, and of course it has to do
with the individual, but when you are talking about changing a
genetic trisomy it is hard to predict what fundamental changes to
that persons personality you are going to impact.
"The true insult here would be that you are taking as a given that
either he or MediaGeek even has a "condition" and that you take for
granted that others will let your premise go unnoticed and
unchallenged."
This is actually not an insult, but a point. All of us have a
condition. It is only when you define someone else's condition as
something that makes them defective that you can dismiss the issue
of what it would mean to make a fundamental change to that
condition as trivial.
I took it for granted that Mediageek or jw would challenge the
statement, but still thought it was a point worth making.
"If it could be prevented by some treatment in the womb, then it
should be."
The assertion that a genetic disease should be prevented from
occurring is different than one saying that an existing person by
default needs to be cured of their condition. And it is far
different from saying that they should not have their existence
inflicted on them. The last would be playing god.
[And it is far different from saying that they should not have
their existence inflicted on them. The last would be playing
god.]
If that is playing God, then so be it; make the most of it. Now
slither on out of here, shape-shifter.
Granted, my son. Now, you're closer to the coals than me, would you mind pouring just a little water over them?
I'd be happy to piss on them for you...especially if you've run dry after all these years (I would think you would have!)
I was wondering what that smell was. And I was going to ask you
what *you* were in for but I think I can guess.
Man, isn't there anyone else down here but pissin' in public
libertarians?
"pissin' in public libertarians" .....finest kind!
"Yeah, verily, I sayeth unto thee. He that pisseth on the wall
shall surely be put to death."
(Deuteronomy?)
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