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Old 05-09-2007, 10:50 AM   #1
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DNA and Down's

okay, i don't want this to be a typical abortion thread. let's stay away from "is it a person/you're a murderer" and procedures and morality and all that. let's keep it as focused as we can on the issue of birth defects -- is Down's a birth defect? is it comparable to, say, Tay Sachs or harlequin ichthyosis? -- and the choices people are faced with, and whether or not legality is the way to amend a problem, if you agree that there is a problem.

okay. deep breath.

[q]Prenatal Test Puts Down Syndrome in Hard Focus

By AMY HARMON
DETROIT — Sarah Itoh, a self-described “almost-eleven-and-a-half,” betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.

She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.

“I am so lucky I get to do so many things,” she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.”

Sarah’s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.

Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.

About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.

Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.

They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call” network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.

The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.

“We want people who make this decision to know our kids,” said Lucy Talbot, the president of a support group here who prevailed on the hospital to give Sarah and two teenage friends an audience. “We want them to talk to us.”

The focus on the unborn is new for most parent advocates, who have traditionally directed their energy toward support for the born. But after broader testing was recommended in January, the subject began to hijack agendas at local support group meetings.

A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain.

“The impact of these changes on the Down syndrome community is going to be huge,” said Dani Archer, a mother in Omaha who has set aside other Down syndrome volunteer work to strategize about how to reach prospective parents.

The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49. As adults, some hold jobs, but many have difficulty living independently.

“There are many couples who do not want to have a baby with Down syndrome,” said Deborah A. Driscoll, chief of the obstetrics department at the University of Pennsylvania and a lead author of the new recommendation from the obstetricians’ group. “They don’t have the resources, don’t have the emotional stamina, don’t have the family support. We are recommending this testing be offered so that parents have a choice.”[/q]
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Old 05-09-2007, 11:16 AM   #2
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Why would it not be a birth defect? I don't think something has to be fatal in order to be a birth defect. I know a guy who has his heart on the wrong side of his chest and one arm shorter than the other. He manages just fine, and we still call this a birth defect because it happened in utero.
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Old 05-09-2007, 01:29 PM   #3
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Of course it's a birth defect, as well as a genetic defect and disorder. As unfortunate as it is, I believe it's up to the individual person whether or not they would like to "amend the problem."
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Old 05-09-2007, 02:13 PM   #4
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I should have a lot to say about this given that I have twin Down's neices that I am in love with, and I am and always will be pro-choice, but I just don't know how to talk about it. Not today, anyway.
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Old 05-09-2007, 02:13 PM   #5
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do we then start to veer towards eugenics?

it seems morally responsible to abort (to my mind) on the basis of some birth defects -- say, harlequin icthyosis -- but is it irresponsible to abort on milder birth defects?

further on down the line, what if DNA allows us to know which babies are going to be smart or not? gay, or not? do we restrict abortion rights on the basis of some birth defects but not others? what might those be? how do we draw up ethical boundaries?
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Old 05-09-2007, 04:34 PM   #6
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So what if we do? I would have no objection to selecting in favour of beneficial traits for my offspring and maximising their potential and I think people should have as much respect for the new master race of augments as they do for others.
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Old 05-09-2007, 04:51 PM   #7
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Quote:
Originally posted by A_Wanderer
So what if we do? I would have no objection to selecting in favour of beneficial traits for my offspring and maximising their potential and I think people should have as much respect for the new master race of augments as they do for others.


does society benefit by the existence of Down's?

likewise, if, say, we were to find that elusive "gay gene," and if, say, a majority of parents decided to abort on it's existence, what would be the cultural consequences? who would design your denim?
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Old 05-09-2007, 05:41 PM   #8
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This is interesting. I nornallly don't do abortion threads. Abortiton threads on FYM are kusually a drag. I'm pro-choice. It's tough to accuse anyone of being ?pro-Downs Syndrome".
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Old 05-09-2007, 06:06 PM   #9
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Most people probably have plenty of traits that are a disadvantage in the modern world that if given the chance would want to elminiate. Elimination of the Mendelian diseases is underway right now and will only continue.

Of course when we get to altering traits in cognitive function it gets really messy since these attributes arise from a confluence of different factors; does turning a supposed genius switch on have negative concequences for other functions - look to cases of savantism for a very narrow window into the possibilities. Which comes first a proper theory of the mind or the ability to distort it? And could the second case yield the first.

But then again the mammalian brain can handle new traits, it has a degree of plasticity (see the great experiment where they gave mice colour vision receptors and the brains developed to match it); perhaps it may not be out of the question.

Of course all of this is moot for me as an individual since I was born before this hypothetical technology is in force; im game for cognition enhancing drugs and transhumanist electronic implants.
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Old 05-09-2007, 06:28 PM   #10
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Quote:
Originally posted by A_Wanderer
Most people probably have plenty of traits that are a disadvantage in the modern world that if given the chance would want to elminiate. Elimination of the Mendelian diseases is underway right now and will only continue.


but most people don't want to kill themselves in order to get rid of the trait. and if pressed, while most gay people acknowledge that it would be easier to be straight, i'm more than willing to bet that even a majority wouldn't choose to be straight if they could.

of course, being gay is hardly comparable to having Down's, let alone a ghastly disease like harlequin ichthyosis. what i'm trying to get at is whether or not the advancement of DNA testing throws a different light on one's decision whether or not to abort.

it could be argued that someone who would abort a Down's baby shouldn't give birth to a Down's baby, but somehow i think that while no one would choose a Down's baby, they are ultimately glad they have that child -- assuming, of course, the pregnancy was desired to begin with -- regardless of the Down's.

is this something we can legislate?
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Old 05-09-2007, 06:37 PM   #11
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But we aren't talking about killing people; it is selecting an embryo with the desired set of traits or engineering one that has them; taking out the odds that the kid will have some severe disadvantage, and if ever we reached a stage where the potential could be increased then that should be on the table too.

If we are pro-choice because a person isn't in the right situation for a kid or they don't want one then that includes because there is a strong chance that it will be gay (even though it doesn't seem to be strictly genetic).

It's an issue of reproductive freedom. The tough question would be is it right to select for a child with a severe disease (not happening in practically every case but there are things like deaf parent wanting deaf kids).
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Old 05-09-2007, 06:57 PM   #12
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I don't want to "engineer" my child, but if there was a severe birth defect to be found I sure would go into some deep thinking, together with my wife, whether we would want the child.

With Down's Syndrome, or Autism or such, quite possible.
Something more serious, rather to definately not.

But I really don't want to make up my mind, yet, and quite frankly, I can't.

For the rest it's my normal stance: The parents should decide. I would never judge them, doesn't matter how they decide.
It's not my business.
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Old 05-09-2007, 07:05 PM   #13
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I'm kind of a black and white person who understands that most things are gray, if that makes sense. The way I see it, you are either pro-life or pr0-choice. I don't think I could personally abort my baby for ANY reason, but I am still pro-choice because I'd rather take the risk of the "all" than the "nothing". For me, the big part of being pro-choice is recognizing that abortion is a choice that should only be made between the couple and their doctors. Therefore, I can't really say with any conviction that I think X-disease should be aborted but Y-disease should not. I'm pro-choice because I understand that for me there is no gray area, but I have no right to make that assumption on others. I'm pro-choice because I value the right that I can choose to be black and white. What other people decide is hardly any of my business.
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Old 05-09-2007, 10:18 PM   #14
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Quote:
Originally posted by A_Wanderer
So what if we do? I would have no objection to selecting in favour of beneficial traits for my offspring and maximising their potential and I think people should have as much respect for the new master race of augments as they do for others.
I understand the theoretical perspective behind your views, but I wonder if you understand the practicality and reality behind your own views? I think what you are talking about is possibly nothing but a waste of time and money. Selection of traits which are beneficial in terms of intelligence and so forth cannot make a bettern child or race. Let's narrow this down to intelligence alone. We all know intelligence doesn't really lead to as much as we're made to believe. Smart people can end up unemployed, or end up lazy and therefore unwilling to utilise their advantage, they can end up incredibly stupid and lacking forward thinking on other areas, they can end up working in a sandwich shop. They can be absolute arseholes, killers, violent, drug addicts, sex offenders, hairdressers, artists, teachers, orthopaedic surgeons, truck drivers, anything. What are your visions for a child of higher intelligence? Your visions of greatness have a small window of likelihood of eventuating, you do realise this, don't you? You do also realise that as a parent, you know full well once they are born that what they are born with really doesn't matter.

I'd suggest you direct your energies to AI and creating a robot. You've got a much better chance of moulding/programming it into what you envision than you do a human being.
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Old 05-09-2007, 10:54 PM   #15
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Am I the only one who interrogate my mother "Why didn't you abort me?"

I think parents are the most selfish people. The child was born, only because the parents want the fun of sex, or because THEY want a baby. Did they ever ask the baby, do you want to come with us, to live in this world? Even if your parents are poor, and you will not be as clever as other kid, not good looking, short, got betrayed by your friends all the time, sick all the time because your body is weak; will be poor for all of your life; you will fall in love but no one love you back....(do I need go on?)

Do we even have a chance to say no?

Yes, the paretns would say: Well, you know we love you no matter what you are.

Hello? Are you going to take care of me for the rest of my life? Can you give me whatever I want? Please don't make promises that you can't deliver.

Abortion? Yes. If you can't be the BEST parent in the world, please do not have children. If you really want a baby, adopt homeless kid, please.
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