Prenatal tests stir host of ethical issues..(the way they will end choice)

[SoCalDem]

a must-read...


http://www.kansascity.com/mld/kansascity/news/nation/10242152.htm

Posted on Mon, Nov. 22, 2004

Prenatal tests stir host of ethical issues

By MATT STEARNS The Star's Washington correspondent


WASHINGTON –– You're pregnant and take a test to determine whether your baby will have Down syndrome. What do you do if the test is positive? You're pregnant, longing for a boy. What do you do if tests show it's a girl? In the first case, many parents choose to end their pregnancies, overwhelmed by the prospective financial and emotional cost of raising a child with the condition. In the latter case, few parents in this country would admit to ending a pregnancy based on gender. But one study indicates 1 percent would consider it.

snip.....

At a Senate hearing last week, several witnesses predicted a dark future in which children essentially could be designed, with children who don't measure up simply not allowed to be born and private corporations profiting from the desires of well-to-do parents. “The new eugenics is a little different from the old, postnatal eugenics, but it's just as threatening,” testified Andrew Kimbrell, executive director of the International Center for Technology Assessment, a Washington research institute. “People don't want happy children; they want children they're happy with.” A New England Regional Genetics Group study showed 6 percent of prospective parents would consider an abortion if the fetus had a proclivity for Alzheimer's disease while 11 percent would do so if a test showed the child would have a proclivity for obesity.

snip......

According to one study cited by Senate staffers, about 70 percent of Down-syndrome fetuses have been aborted since 1989. The staffers said the trend was rising: In 1989, about 57 percent were aborted. By 2001, that had risen to 75 percent. “I want to start from a basic standpoint that every child is beautiful and unique,” Brownback said in an interview. “A Down-syndrome child is beautiful and unique. And we try as a society not to discriminate against a Down-syndrome child once they're here, to mainstream them in classrooms, in jobs. Why do we discriminate in utero, which is taking place? Plus, now it's not just Downs, now you're going into literally hundreds of different tests.”

People with Down syndrome teach the rest of society “compassion, heroism, humility, courage and self-sacrifice,” Brownback said, making them an important part of a diverse culture.Brownback questioned whether ending a pregnancy based on a disability is any more ethically sound than ending one based on the child's sex.Brownback said he was unsure what role lawmakers should have but said he might introduce legislation on the topic in the next session of Congress. Sen. Frank Lautenberg of New Jersey, the panel's ranking Democrat, accused Brownback of hijacking the subcommittee to “advance an anti-choice agenda.”


snip....

Sensenbrenner, the wife of U.S. Rep. James Sensenbrenner, a Wisconsin Republican, asked, “As a society, do we really want to live in a world where children must pass genetic tests in order to be born?”

To reach Matt Stearns, call 1-[phone] or send e-mail to [e-mail].


--------------------------------------------------------------------------------

First glance

• Prenatal testing is giving parents more information about the genetic makeup of their children.

• Some wonder whether society should limit the actions parents can take based on the results of such tests. Others think those decisions should be left to

families, not the government.

• A Senate hearing, called last week by Sen. Sam Brownback of Kansas, examined that issue

[DBoon]

1. I wonder if the increasing termination of Downs syndrome pregnancies

might have anything at all to do with the increasing cost of medical care and other support, and the constant cuts in government programs to support disabled children?

[murielm99]

4. No shit.

See my post below.

BTW, my friend who did not abort, lives in Canada. They had all their medical stuff paid for. If she had lived here, they would probably have been bankrupted.

[gaia_gardener]

37. I think that is entirely likely

we have family members that have a girl with down's. She's the same age as our oldest child and they are going bankrupt caring for her. She has already had one heart surgery (common with down's) and will likely have to have more.

He has been lucky to get a job as a firefighter and so now they have decent insurance, but they expect to max out every year just for basic things. If anything happens that isn't basic, it will out of pocket.

She has been able to attend school since she was 3 (allowing her mother time to attend to her other child), but she will never progress to the point of a "normal" child.

We love her and wouldn't give her up, but it is so hard to watch the struggle her family goes through.

[murielm99]

2. And this is new in what way?

I had my kids in my thirties.

My son, who is the light of my life, had a couple of correctable birth defects. He had two surgeries before he was two years old.

So, when I was pregnant with my third, I had the genetic testing. I was 35 then, and had a history. We wanted to know what to expect with kid number three.

She was fine. She was great, actually.

Why should someone take that right to know away from me?

Would I have aborted if she had had serious problems? Possibly. Why should anyone take that right away from me, either?

One of my friends had a kid around the same time I had my youngest. Her daughter was born with all her internal organs in a sac, outside her body. She also had a heart defect. They found out about her problems from a routine ultrasound, and did further tests. They did not abort. But they had a right to make that decision themselves, and to know what to expect.

Did I mention how long ago this was? My son is 23 and my daughter will be 21 next month. There is nothing new about this.

[alarimer]

36. I agree with you

It is not a decision for the government to make. People have a right to know these things and a right to make the decisions based on that information and on what they believe is right for them.

[LeighAnn]

39. What gets me is the way the government forces it

If you're over 35 and on medicaid, you are forced to submit to the amniocentesis. They force you to take a 1 in 100 chance that you're going to abort your baby, just so that you'll be able to know whether or not you'll want to abort it.

[elizsan]

44. Not true

I'm a physician. That isn't true that women are forced to have an amnio. It is not legal to force a patient to undergo any testing or procedure. Period. That is not to say that under the second Bush administration this might not change. Who knows, they might start to force sterilization on Medicaid women, as they did many years ago on mentally handicapped women. It wouldn't surprise me in the least.

[area51]

51. Welcome.

Welcome to DU, elizsan.

[DemBones DemBones]

69. Nonetheless, some physicians try to force patients to have

amniocentesis.

I know a couple who decided they didn't want to take the risks of amniocentesis. Her other pregnancies had been normal and the only risk factor was her age. They knew they would not choose to abort if they learned there was a problem. When they explained this to the OB-GYN, he informed them he would no longer be her physician.

[SoCalDem]

71. Usually when women are "older" they are referred to a "high-risk" OB/GYN

The ones I have known (I was high risk for the last two) can be quite overbearing. Perhaps it's because they DO take care of the type of patient who is likely to have "train-wreck" pregnancies. My own OB/GYN wanted me to abort my 3rd child because I became pregnant only 4 months after my 2nd (oops).. I refused, and all he had me do was to sign a statement noting that he advised me to terminate, and that against his advice, I declined..Of course, I ended up having my second abruption, and nearly died again, but we would have never sued him..

It took me about 10 tries to even GET him as my doctor, becase so many would not take me as a patient :(.. (That was our LAST child...it was just too risky to try for that ever-elusive girl:(.)

[phylny]

63. I, too, had testing years ago.

I wasn't going to have the test for neural tube deficits, but the doctor advised me that it would help the baby if we HAD found possible spina bifida because we could then do further testing, and deliver her by ceserean to minimize the damage to her spine.

We went ahead and had testing, and she was at an elevated risk for Down Syndrome.

We went to a genetic counselor and had many discussions with our doctor. We decided to continue with the pregnancy, but I always had that nagging thought, "If she has Down Syndrome, what the heck will this do to my other children? How can I possibly do my best for all three?" I work in special education, and I *know* what it means to care for and educate a child with Down Syndrome.

When she was born, she was perfectly healthy. But I'm glad I had those tests so that I could make a decision with my husband and doctor, without the government interfering with my family.

[The empressof all]

3. They don't get it.

"People with Down syndrome teach the rest of society “compassion, heroism, humility, courage and self-sacrifice,” Brownback said, making them an important part of a diverse culture.Brownback questioned whether ending a pregnancy based on a disability is any more ethically sound than ending one based on the child's sex."


And is the Republican Congress willing to increase funding for the appropriate care of these children and adults. Will they pay their caregivers a living wage? Will they have adequate housing, job training, and for that matter Jobs to go to if they are able to work?

This kind of self-righteousness drives me crazy.

I totally in support of bringing these pregnancies forward if the mother chooses to do so. But then lets support these families and kids with the appropriate life time services. I would think it would be extremely difficult to choose to bring these pregnancies to term when you know that the child will suffer at the hand of our government.

[Demeter]

18. Considering that Comparable Worth (Paying Women Like Men)

is a dead issue, selecting for sex is not so selfish or stupid, either. What is stupid is insisting that other people kowtow to your refined sensibilities and authoritarian "shoulds".

[kslib]

73. *Sigh* Brownback

is my representative. (ugh) I've written him many many times over the years to express my views on women's right to choose. He always replies with the same general message: "As the father of two adopted children, I cannot support the murder of innocent life." blah, blah, blah. I'm very happy that he was able to give what I am sure is a loving home to two children, but what does that have to do with a woman's right to choose?

[DrZeeLit]

5. So, does S. Brownback want to fund health care for children?

I always smile when I read something like

'People with Down syndrome teach the rest of society “compassion, heroism, humility, courage and self-sacrifice,” Brownback said, making them an important part of a diverse culture.'

I want to know if the Senator has a Down syndrome child? How does he know? Is he struggling to put food on the table for a family without a living wage? without health care insurance?

A woman has a genetic test usually if she's older or facing a difficult pregnancy. This is her right and terminating said pregnancy is her right.

Perhaps the Senator wants to romanticize life with a Down syndrome child -- especially a woman in her 40's realizing that this child will be with her for life, that she will have to take care, lose a job/career, pay for child care -- forever. Not all peasants have the wherewithal or stamina to go on with that scenario, especially if the family has other children, older parents to help, or special circumstances.

I know, it sounds heartless, and I have never had to consider this. But I often wonder what I would do. Having choices is always hard, but it's really none of this Senator's business, unless he wants to fund health care, insurance, and child care facilities. Does he? Let's see where the budget cuts take him, shall we?

[SoCalDem]

8. With repubes, it's all about GETTING kids born

and then tossing them aside once they are "here".. I do not recall seeing people marching around weeping because they are desperate to adopt handicapped children .....

Perhaps the right-to-lifers should shift their focus to adoption for all those kids who are here, and might need families..

[DrZeeLit]

24. Agree -- RTL, to be one, hold the banner, means == offer to adopt!

Let's see if the romanticism attached to Down syndrome runs to the adoption arena.

[Mad_Dem_X]

66. Exactly! Once the kids are born

the right wingers couldn't care less what happens to them.

[KamaAina]

48. Conservative Idiot: Sam Brownback

I guess I'll put him in next week, for the next Top Ten the week after. He's certainly earned it:

And we try as a society not to discriminate against a Down-syndrome child once they're here, to mainstream them in classrooms, in jobs.

So, Sam, you're telling me you did NOT vote to confirm repuke judges like Jeffrey Sutton who OPPOSE civil rights for people with disabilities? Moran.

[moggie]

72. A modest proposal

People with Down Syndrome (and other disabilities) are often admirable, of course, but if they "teach the rest of society compassion, heroism, humility, courage and self-sacrifice", perhaps we should look for ways to bring more of them into the world? That would be a good thing, right?

"I'm sorry, Mrs Brownback, but the tests indicate that your baby is perfectly normal. Could I suggest drinking heavily? Babies born with fetal alcohol spectrum disorders can teach the rest of society compassion, heroism..."

Choice: They Just Don't Get It:grr:

[leftchick]

6. 'Left-Leaning' International Center for Technology Assessment.?

a quick google brought up this from the repuke effort in 2001 to ban cloning. wtf is the New America foundation? It sounds very fundie-like.
http://www.newamerica.net/index.cfm?pg=article&DocID=400

~snip~

This is especially true given that Greenwood still has every intention of offering his pro-therapeutic, anti-reproductive cloning legislation and fighting the Weldon bill in committee and on the floor. If the 1998 debate is a preview, the biotech lobby will try to repeat its success by casting the Weldon bill as a threat to everything from in-vitro fertilization to stem-cell research to reproductive rights. But "this is not about abortion rights," says Andrew Kimbrell, co-organizer of the upcoming Progressive Caucus briefing and executive director of the left-leaning International Center for Technology Assessment. "If anything, cloning is anti-choice. Once we do it, we may not be able to control who does it to us."

[Blue_Tires]

7. "Aryan supermen are our heroes"

that path is being paved out now

[BurgherHoldtheLies]

9. They always use high-functioning Down's Syndrome as cover...

As a medical professional with 7 generations of physicians in my family, I find this hidden agenda by the right wing to hold up high-functioning down's syndrome children unethical and appalling. Down's is not always the high-functioning poster child they like to cite, but instead is a large, often devastating spectrum of abnormalities. There are also many more genetic disorders that have a guaranteed fatality rate/incompatible with life or extreme conditions such as anencephaly/microencephaly with no quality of life whatsoever.

As a woman with children I can make an informed decision on whether or not I want to carry a severely damaged child to term. No lawmaker will tell me otherwise.

[kslib]

74. Is it true..

that a lot of these babies are born with incompatible with life complications, and that "heroic measures"/surgeries must be performed just to keep them alive? I know a pediatrician who performs surgeries on these newborns, and talks about often being very burdened with the knowledge that these kids will probably never have a very good quality of life, and that without this medical technology mother nature would have ended it for these "poor souls." I'm not really sure how I feel about that because I don't have much personal experience with severe developmental disabilities (although I have worked with them), and I know that when it is your family or a close friend's family, it becomes a very passionate issue. Any thoughts from a medical perspective?

[SoCalDem]

75. Yes.. there is a specific set of heart anomalies and often

ear problems that require surgery. Downs kiuds used to not have the surgery offered, and lots of them would die before their teens. In the 70's(I think) , doctors started doing surgery on Downs babies, and they can now have a normal lifespan.

[BurgherHoldtheLies]

76. Beyond Downs Syndrome

There are some horrific, incompatable with life conditions that can now be detected via prenatal tests. There are also several genetic conditions, like Tay Sachs Disease, which can be diagnosed early but have no treatment or cure ..if born, the baby is guaranteed a prognosis of slow, degenerative death over a few years.

Bottom line: it is not the government's business to dictate what families should do under such traumatic circumstances. I believe that quality of life cannot be dismissed in order to supply quantity of life.

[UpInArms]

10. these morons just don't understand much of anything, do they?

spina bifida

GRAPHIC PHOTOS

?ab

and I can't find anything about the cost in the US, but here's a UK article

Disabled people’s costs of living in UK: ‘More than you would think’

http://www.ifglobal.org/newsroom.asp?lang=1&main=11⊂=1&art=20041029152327

A study, released on 20 October 2004, exposes the extra costs of living that drive disabled people deeper into poverty

Disabled people who rely on state benefits or work for the national minimum wage have weekly incomes that are far below the amount they need for an acceptable quality of life.

For those who solely depend on benefits, the deficit between the payments they receive and the minimum sum required is £200 a week or more, according to research for the Joseph Rowntree Foundation.

The study calculates the costs of essential items, including personal assistance, which people with different levels of disability would need to lead their lives on level terms with non-disabled people. These examples of ‘budget standards’ were drawn up by disabled people in Birmingham, Derby and Nottingham with researchers from the Centre for Research in Social Policy, supported by Disability Alliance.

The research found that disabled people experienced extra costs in most areas of everyday life. These range from major expenditure on essential equipment to routine additional bills for food, clothing, fuel, transport and leisure activities

Generally speaking, people with the greatest needs had the highest costs. However, transport costs were greatest for those with fluctuating needs, and communication and leisure costs were highest among deaf people. Personal assistance includes the cost of interpreters for deaf people and trainers for visually impaired people, as well as personal and home care services.

...more...

[Danmel]

11. Spina Bifida

Spina Bifida and Down's are bad examples because there is a great deal of variability in the extent of the deficits the child may suffer-although very few Down's children can go on to lead independent lives. one of my daughter's best friends ha Spina Bifida- she is almost 14. She has some paralysis- she uses crutches and has some continence issues- but she is a capable, bright, and very likable child. Her life is certainly worth living. The pictures you show look ghastly, but surgical correction, especially if a diagnosis is made in utero and early intervention can take place, can really help a lot.

Fortunately, cases of spina bifida and other neural tube defects have declined dramatically with the fortification of foods with folic acid.

There are many conditions that pose more serious questions: I know personally a few women who had fetuses with chromosonal abnormalities that were inconsistent with life- would our August senator Brownback really want to make these women carry dead babies to term? And if so, why?

[UpInArms]

12. you missed my point, Danmel,

I didn't say that these babies should not be born, but without testing and proper knowledge (some of this can be corrected through diet while still pregnant), this is what will be delivered into the world of people without a clue, without preparation, without having the proper medical team or treatments lined up.

To try to remove the testing will only make certain that lives are ruined.

[SoCalDem]

13. He would, because he could..

The dirty secret though is that in the privacy of their own homes, lots of repubes ARE decidiing to terminate "problem pregnancies".. We just don;t find out about them, because they are "appendectomies", or "female troubles",or "trips abroad", or any number of other things.

When you have achieved a certain strata of society, you have "options" that ordinary people do not have.

[elehhhhna]

14. What if Down Syndrome is the pinnacle of Karmic reincarnation?

Part of the syndrome tends to be a loving, affectionate personality, and innocence is bliss...think about it.

[elehhhhna]

15. The Insurance Companies will never allow pre-natal testing to stop!

They push the HELL out of it--do you know what a d.s or spina-bifida baby COSTS healthcare wise? I had to fire an OB over this. He INSISTED on testing, period (I had NO risk factors.) They push it for economic reasons.

[SoCalDem]

19. and for malpractice too..

Lots of doctors order every test they can think of, so that later they do not have to explain why they did NOT..

[VegasWolf]

42. I agree, the malpractice liability is the greatest reason for most

testing. I have friends that complain that they
are afraid sometimes of not writing scrips for OxyContin
and other pain medicines because of the threat of a malpractice
claim from a patient complaining of needless pain.

[Ilsa]

27. So, what will we do if everyone evolves to this state of being?

How will the species survive if moderate to severe retardation is part of the schema?

[LizW]

34. Then people who hold a belief in Karmic reincarnation

probably wouldn't abort. But they should still have the right to do so. Religious beliefs should not influence what the state requires or allows.

[gaia_gardener]

38. I've heard that

but so far our experience with our cousin (she's 6) has been increased incidences of rage and violent outbursts. I'm sure she has her loving moments (all children do) and I'm sure I see more of the rage and outbursts because I'm only around at holidays (which are very stressful times), but her mother talks about how scared she is to have this new baby and how she worries that the older girl will hurt the baby.

[phylny]

64. Sorry to generalize, but part of syndrome is also often

obstinate and stubborn.

I HATE generalizations, but I'm a speech-language pathologist and I know. TRUST me, I know. Loving, funny, affectionate, too, but boy oh boy....

:pals:

[DemBones DemBones]

70. Excellent points. Down syndrome varies in severity

according to whether it is caused by a trisomy of chromosome 21 (there are three copies of chromosome 21 when there should be only two) or by a translocation, in which bits of one chromosome actually break off during meiosis and stick to another chromosome (not an autologue.)

Early mental stimulation/ education can make a significant difference in the development of a child with Down syndrome.

[Ilsa]

26. We had one born at our hospital recently.

The neonatal nurse noticed how dusky the baby was only a few hours after birth. She called the pedi who diagnosed a major transposition of arteries involving the heart and lungs, etc. It was his grim duty to tell the parents that the baby wouldn't survive much longer, even with surgery. I don't know how much grief it would have saved the parents, but I would have liked to have known well ahead of time so I could end the pregnancy earlier.

And yes, sometimes the testing allows doctors to intervene earlier to correct problems.

[Demeter]

16. As A Mother of a Disabled Young Adult

I have to say that given the knowledge, I would have spared all of us, including the child, the unending pain. My child is disabled enough to never be able to function without constant skilled support, and able enough to be totally aware and unhappy about it. There are no compensations, there are just poor methods of compensating. It would have been better for all if this soul could have had another chance at a better reincarnation, rather than being trapped in a half-life.

And THAT is why the Fundies are so bent out of shape over Evolution: Survival of the Fittest hurts! And they have more than a sneaking suspicion that they and theirs are unfit (unless big Daddy Bush bends Reality for them!)

[elehhhhna]

17. That's a brilliant statement! Interesting & provocative.

"And THAT is why the Fundies are so bent out of shape over Evolution: Survival of the Fittest hurts! And they have more than a sneaking suspicion that they and theirs are unfit..."

[pop goes the weasel]

33. brave of you to say so

When I made a similar statement a few months back on DU, I got jumped all over by people who thought I was heartless. This despite the fact that I had clearly indicated that the notion that I would have aborted if I had known I was passing on a genetic disorder actually provides a great deal of comfort to my daughter, who has herself made the decision that she will not bear children both for her health's sake and so that she won't pass on this untreatable, degenerative, painful and often frightening genetic condition. We know others who have the same condition who have made the same decision, and some who have chosen differently. None of us criticize the others because we all have had to consider the same issues and the only thing we can agree on for sure is that there is no good answer, so it is best that some choose one way and others yet another. And that this is our business, not the business of the government that helps us not at all.

Hell, we can't even get the local post office to put in a ramp. Nor can my daughter get the full cardiology work-up she needs to find out if she has an aneurysm or floppy ventricles. Brownback can just go Cheney himself.

[SoCalDem]

65. I have a good friend with polycystic kidney disease

and she had a hell of a time finding a doctor who would do a tubal ligation for her when she was just 23. She would have been a great Mom and her sweet husband would have been a great Dad, but because of her condition, they were not even able to adopt.. They gave up after about 8 years.. She is now on a list for a kidney transplant and is on dialysis..but the doctors said she would be an unlikely candidate even if a kidney became available :cry:.. Her decision to NOT have kids was a brave and generous thing to do, and her then-doctor made her feel like shit for doing it. She's 45 now, and is the "longest-living in her family..,(of the ones with PCKD)..several others died from it in their 30's...

[TexasBushwhacker]

43. I have a cousin whose daughter has severe Cerebral Palsy

The daughter, now 23 I believe, is usually happy, but there are times when she gets depressed about how her life is, and how it will continue to be. She can use her left hand well enough to feed herself, but that's it. She will never be able to walk, to bathe herself, to go to the bathroom by herself, etc. My cousin and her husband are now in their early 50's, and have to plan for who will take care of their daughter when they no longer can. There are times when the daughter has mentioned suicide in front of me, and we're not that close! My cousin and her husband have handled their daughter's disability like real troopers, but in the whole grand scheme of things, I do wonder if the daughter wishes she'd never been born.

[progmom]

49. Demeter - thanks

Thanks for your brave statement.
When we got back results from our ultrasound that indicated markers for DS, I was suddenly faced with the realization that I would have to make a decision about whether to terminate if the results of further testing came back positive. The idea scared and mortified me, and I still don't know what I would have done, but I am glad to hear that I am not a terrible person for having considered it.
We were very lucky - the subsequent tests proved the first to be a false positive.
I'm really sorry you're going through what you're going through.

:hug:

[xpunkisneatx]

20. Interesting...this is what my medical ethics project is on...

Well, actually it is on genetic screening and engineering, but I chose to focus on newborn screening and prenatal diagnosis. In reality, aborting "unfit" babies is not going to have a huge effect on society. Because only each spouse contributes DNA, obtaining an "optimal" child is all within the genes of the parents (meaning: if you dont have good genes, you are not gonna have an "optimal" child). The argument people make is that women will keep aborting babies until they get a "perfect" one...and this is really not feasable. How many women do you think will abort babies because the hair color gene is wrong? Not many. The real worrisome trend is preimplantation genetic screening. This is when you go to a fertility clinic and have your eggs fertilized by IVF. They then take 1 or 2 cells from the 4 cell stage (or 8-10 cell stage...either works) embryo and do karyotype testing and genetic screening and choose the "best" embryos to implant. With the Human Genome project finished, it is going to be alot easier to screen embryos for specific gene markers rather than screen fetuses that are already within the womb. It is easier to get rid of an embryo than it is to abort a child that is already within you. Also, this whole deal with designer babies...ya know, inserting genes into embryos and what not? Well its pretty far fetched. First they still have to find what all the genes in the human genome code for and what other genes they interact with...and most of the traits that parents will want changed in their children are polygenic (meaning more than one gene contributes)...such as appearance and intelligence. It would be very difficult to change all of these genes. Height, weight, eye color, hair color, and sexual preference may be easier to engineer, but it won't be for a while. There is also problems with inserting the genes into the genome...if they are inserted into the wrong place, they could activate (or inactivate) other genes who should be off (or on). They can cause mutations in other genes causing genetic disorders. New artificial chromosome technology is looking to change this, but they have not figured out how to get artificial chromosomes to divide during mitosis.

Phew. that was alot. sorry if I bored anyone.

[SoCalDem]

21. Not boring at all.. Sounds like an interesting topic

It's too bad that our government is so shortsighted when it comes to science..

I am glad to see that some people are still excelling at it :thumbsup:

[xpunkisneatx]

25. Glad you liked it...

I am quite enjoying doing this project...its not as bad as I thought it would be. And BTW...since i am also doing stuff on newborn screening, here is something interesting...

Worst states to be born:
Arizona, Arkansas, Colorado, Connecticut, DC, Florida, Georgia, Kansas, Kentucky, Louisiana, Michigan, New Hampshire, New Mexico, Oklahoma, Rhode Island, Texas, Virginia, Washington, West Virginia, and Wyoming

These states test for less than 10 out of the 44 genetic disorders that can be tested for. Of those, Kansas, Kentucky, Oklahoma, and West Virginia only do the 4 required tests and nothing more.

Best states to be born:
Alaska, Hawaii, Idaho, Illinois, Indiana, Iowa, Maryland, Minnesota, Mississippi, Nevada, and North Dakota.

These states test for at least 30 out of the 44 disorders. Iowa tests for 43 out of 44 disorders. Notice the populations of these states...much less than say Texas or Florida...is money dictating who can be saved from an inborn genetic disease? I think so...

I got my info here...http://genes-r-us.uthscsa.edu/nbsdisorders.pdf

[Ilsa]

28. Interesting...

A friend told me about one of her friends that has a house full of Downs kids. She kept trying and kept getting the same result.

My son isn't quite 8 yet, but I worry all the time about his future with PDD-NOS. The system does little to help. It is only nice people that have made the difference. I fear for my son after I'm gone.

There is absolutely no way we could have been prepared for this difficulty in our lives. I'm taking an antidepressant now. My husband probably needs one.

That woman's testimony about the disabled being teachers has such bullshit conclusions. The problem, of course, that most people don't listen and learn the lesson. I can't help but wonder when Rush PillBoy is going to make fun of them. Oh, that's right, he already has, by commenting about them standing in lines for a free meal. I have no doubt that some of those people are disabled.

[Ilsa]

22. The families in CA that could lose their respite care

due to budget cuts should testify about what a relief it is to be able to get away to DC to talk to stupid Congresscritters.

As the mother of a disabled child, I can tell you that the school systems supposedly support mainstreaming, but we've already run into problems in the fuggin first grade!!! There isn't enough speech therapy and other therapies available for our child, so we pay part ourselves, and part is paid by insurance. Eventually, the insurance will max out.

Until we are willing to pay non-disabled women and minorities the pay as men get for equitable work, then this was nothing but a dog and pony show.

BTW, some women get the prenatal testing to determine if they should give birth in a better hospital. Not all hospitals are quipped to handle high risk births.

Fascists. They ar emaking it really easy for me to hate them.

[SoCalDem]

23. I have a friend who has a severely autistic 16 year old son

She has aged so much caring for him, and I have seen his younger brother "retreat".. The oldest son (of two) is the handicapped one, and my friend can barely control him. He is a strong kid, and must be restrained in his stroller to keep him from grabbing people as they pass. He's not toilet trained, cannot speak, and is very agitated all the time.

It's strained their marriage, and you can see the sadness in the younger brother's eyes :cry:

[Ilsa]

30. Our marriage isn't strained, but my husband and I

do't have the energy for as much intimacy. My son is physically strong as well, and I predict his strength will outstrip mine in about three years.

The only good I see out of the govt's psych testing and drugging of school kids is that it might actually allow some families to get the drugs they need for their kids, but can't afford right now. Maybe the 16 YO needs a new drug.

[SoCalDem]

31. This family spends almost every waking hour taking care of

or researching or begging for help... They have no extended family near them, and have pretty much done it all themselves.. I don't know what meds he takes, but I do know that they have unturned no stones in trying to get him the help he needs..

[Malva Zebrina]

29. I have seen many Down's syndrome children who are not beautiful

but I did see many who indeed were unique. I saw many left in the State hospital, for the state to care for and one even left in front of the door in his wheechair, abandoned there by a mother who had reached her limit and was quite psychologicaly affected.

Just providing another view to the puff piece in the intro.

It should be left to families to decide and not the state.

[They_LIHOP]

32. Bush and Co. Won't END ABORTION...

That is fundie-bait BS. I don't think they'll do anything but pussyfoot around the issue.

The truth is that these cats are closet eugenics fans. Their actual goals are antithical to those of the pro-life movement. Don't forget theirs is a Fascist movement. Fascists are ALWAYS trying to create 'master races' of 'superior human beings'.

THere is simply no way Roe v. Wade will be overturned w/bushco in power. Aside from the aforementioned fascist tendencies, banning abortion is just going to create more 'minority' (read: DEMOCRAT) babies/future voters. They DO NOT want any part of banning abortion.

Trust me on this...

[samtob]

35. I agree Roe V Wade is not in danger

of being overturned for first trimester abortions.

Now, second and third trimester abortions, they are definately a target and will be in danger.

[TexasBushwhacker]

47. Do you think they're just throwing the pro-lifers a bone?

The vast majority of abortions take place during the first 12 weeks (88% according to Planned Parenthood). Only 1.5% occur after 20 weeks. Of course, birth defects are often not discovered until the second trimester, complications that threaten the mother's health may not occur until the second or third trimesters, and abortions can be delayed for financial and other reasons.

[kitkatrose]

40. Wooooo boy,

WASHINGTON –– You're pregnant and take a test to determine whether your baby will have Down syndrome. What do you do if the test is positive? You're pregnant, longing for a boy. What do you do if tests show it's a girl? In the first case, many parents choose to end their pregnancies, overwhelmed by the prospective financial and emotional cost of raising a child with the condition. In the latter case, few parents in this country would admit to ending a pregnancy based on gender. But one study indicates 1 percent would consider it.


Someone's been watching too much Gattica. :eyes:

So that's one percent out of how many people who plan to/are able to have kids?????

[Igel]

54. I'm surprised

nobody's mentioned China or India in this thread.

There's a reasonably large deficit of females in the under-20-year-old population. Instead of the usual 101 boys for each 100 girls (or thereabouts), in some areas it's more like 113 (or more) boys for each 100 girls. Gonna have fairly large social repercussions in a decade or two. India's pretty much banned IDing the fetus' sex.

[kitkatrose]

67. That was just dumb. (not you, the female deficit)

India and China have had a history of dumping/killing female children, before prenatal tests were available. They just left them to die after they were born, once their sex was discovered. That one's rooted more in the view of women as less than men rather than some inherent evil in prenatal testing.

But really, what were they thinking? If you only have boys, who's gonna have the next generation of children (this is presupposing ethnic purity)? Men can't reproduce by themselves and once menopause hits, they can't get any from the previous generation of women. Such ignorance...

[Karenina]

41. These are NOT "ethical" issues

They are PRIVATE family issues to be decided between the parties affected and their health care professionals.

[semillama]

45. warning: tasteless partisan comment

So, can they test for republicanism? Something to consider...

:evilgrin:

[mulethree]

46. future babies

What are the limits?

I have been concerned about evolution loosing its grip on humanity.
Survival of the fittest has weakened. Congenital defects that used to have little or no chance of being passed on, are being passed on.

Medical science is allowing an increasingly defective gene pool.
Machines allow the physically weak to compete.
Safety measures allow the dull and slow to survive.
Glasses allow the nearly blind to compete.
Cosmetic surgery allow the ugly to compete.
Cesarean sections allow the narrow-hipped to procreate.
etc.

Instead of only the strong surviving, its only the weakest that don't.

So a germ-line gene therapy that corrects this could be good. And until then, why not genetic filtering?


But with no limits, why not screen everything and go for designer babies. Not very practical with in-utero tests, so in-vitro is the way to go.

Fertility drugs to produce many ovum. In-vitro fertilization, and then a full set of screening tests. If we've got a 30% implantation success rate then we just keep screening till we've got the 3 best gene combinations out of the lot.

We'll improved on evolution. Within the limits of our screening and gene-correction technologies.

But no more JFK's, or Beethoven's or Steven Hawkings's

But at some point, the 'perfectly normal' can no longer compete? The rich kids are all strong, gorgeous, geniuses with perfect reflexes, eyesight, teeth etc.

But is that different from today where they have tutors, prep-school, ivy-league colleges, nose jobs, orthodontists and trust funds?

[kitkatrose]

68. Hey, that's the premise behind Gattica.

:) If you were concieved the natural way (screw and wait), you are inferior to the genetically manipulated and can only get the jobs America likes to give to illegal immigrants. No hope of success.

[davsand]

50. When my daughter was born I horrified the OB.

I was old enough when I had my daughter to have them suggest amnio. I had no qualms about it, simply because I knew damn good and well that I did not want to have a child that had severe birth defects. When I told the Doc exactly that, he about went into meltdown until I explained to him what my thinking was...

I was born with a cleft palate and harelip. My birth defects were correctable, and I am leading a wonderful life--NOW.

However, as a child, I was tormented and teased and every freaking day was another test of my sense of self. My parents suffered with me, and they fought for me as much as possible, but it still hurt them terribly to watch me cry.

My mother was made to feel guilt (as if she had any control over my birth defects), and my father was forced to borrow money to pay for my corrective surgeries. My older brother resented me because of all it took for the family to provide for my needs and the level of attention I required as a baby...

I know damn well what it is to have a child that is "different" and I know first hand how miserable that kid can be no matter how loving the family is.

I would never birth a child to a life of pain and sorrow, and F**k anyone who wants to tell me I should because of some "moral" obligation they think I have. Morality is NOT about bringing pain to anyone--especially some child and some family forced to watch that child suffer.


Laura

[SoCalDem]

52. Our oldest was born before untra-sound and had serious brith defects

He had 29 surgeries at Mayo Clinic before he was 8 yrs old.. I have walked in your parents' shoes.. Because of his birth defect he wore diapers until he was 8.. It hurt like hell to hear mean kids call him "Pamper-Boy".. One day I heard one call him that and I sat him down in our garage and aked him how HE would feel if he had been "cut" from his breastbone to his pubic bone, and then had his whole abdomen opened.. and how he would have felt to spend months at a time in the hospital, tied to the sides of the bed, so incisions were not opened through movement..

The kid went home in tears, when Scott lifted his shirt and showed the kid the patchwork "design" of scars on his tiny body.. Later the Mom called me, all upset..but when I told her what her son had said , she broke down and apologized and had him do so as well..

They ended up best of friends, and Kyle stood up for him when opther kids teased him..

The ultimate irony is that after the perfectly shitty childhood he had, he turned out to be a very well-adjusted kid, and is a "six-figure" guy now with a wife and a beautiful home, and a great job..

Having no way to predict what was happening in-utero , the choice was out of my hands..but with the technology available these days, I still say it's the woman's choice to make..

Would I have chosen to not continue?? Who knows? He was my first, and I was so eager to be a Mom, I would probably have gambled that the doctors were wrong..or maybe I would have been so scared that I would have chosen to end the pregnancy.. Hindsight is always 20-20..

[davsand]

56. In hindsight you know he turned out OK.

You know now that he did survive the cruelty and he developed the personal fortitude to stay alive. A lot of that is attributable to YOUR strength and YOUR love for him. Take pride in your kid--he thrived because of you.

I was not convinced that I could be that strong or that wise for my unborn child. Unfortunately, I still carry mental scars from my childhood. While they lessen as time passes (funny how much less others' approval matters as I age...) the hurt never does really go away. I really felt that I could not stay sane if I lived thru it again with it being my child suffering rather than myself.

I was lucky--my kid was perfectly normal--and is beautiful in my eyes. She is bright and fun and a very kind soul. I was saved from having to make that choice, and I count my blessings every day when I look at the joy that is my child. Like you, I wanted to be a Mom and I take a great pride in watching my daughter share her gifts with the world.

Oddly enough, if you read in the parenting forum, you know that MY looks are causing a few problems for my daughter at school--other kids are teasing her about how I look. (Hell, I don't think I look that bad--but kids pick up on EVERY little difference.) It never goes away completely, I guess...

Brightest blessings, my friend!

Laura

[SoCalDem]

61. Beauty IS skin-deep.. and some people are BOZOS

My motto.. No time wasted worrying about BOZOS..

and you are right..kids can be the cruelest beings on earth..

The toughest thing we had to do was to NOT pamper or baby our son. The doctors at Mayo Clinic told us from the get-go, that he would have to endure MANY operations, and he would have to be extra-tough, so we had to make a conscious effort to NOT treat him as the fragile, little person he started out to be..

He played soccer, did his share of getting hit and knocked around in games :scared:...rode bikes... raced cars... did all the scary stuff, but when he had his first operation he was less that 3 weeks old and didn't even weigh 5 lbs.. Sometimes he would be in surgery for 8-10 hrs at a stretch.. He spent about 6 birthdays and a few Christmasses in the hospital, but he never complained..

When we looked at how patient he was during those years, and how he put up with so much more than we every could have, the overriding feeling was respect for this tough little person we created..

It was hard to resist coddling, but we're so glad we didn't, because he grew up strong and confident..

[fidgeting wildly]

53. More fundie BS.

The fundies are the ones who push for these tests a lot of the time!

My MIL volunteers for one of those fundie "pregnancy centers" (her term), where they give free pregnancy tests and then bully and frighten their "patients" (almost entirely poor young girls) into having the child by telling them things like "abortion causes cancer."

These places STRONGLY encourage the women to test for the fetus's sex, with the idea that if you know what it is, you'll be less likely to abort it. I have no idea if there's actual data to back that claim up, but that is how they think and operate.

For them to also suggest that these tests ENCOURAGE abortions is them having their cake and eating it too.

[0007]

55. It still comes down to the choice of the mother and her right to

choose. James Sensenbrenner, Sam Brownback's freedom ends where the pregnant woman's nose begin.

[GoddessOfGuinness]

57. A friend of mine's fetus tested positive for Downs

and he was born perfectly healthy. She considered abortion, but ultimately decided to continue the pregnancy.

A second opinion can come in handy in cases like this.

[elehhhhna]

58. False positives and negatives do happen-- I've known of both...

[BamaGirl]

59. These people are idiots.

I had an amnio at about 18 weeks with my third child because of DS indicators. We didn't have insurance, were about $100 over the freaking medicaid limit, and had no idea if there was ever going to be any insurance. We paid over $10,000 for pregnancy care and a c/section. It would have damned near killed me, but abortion is a choice I almost would have had to make. These pro-life people don't care about people at all. They completely piss me off.

[proudbluestater]

60. This is NOT an issue for the government to decide

Let's first worry about:

The massive DEBT
The failing war in Iraq
No health care for 40 million Americans
Jobs leaving the country
Gap between the rich and poor greater than at any time in our history
Stagnant minimum wage which has actually lost value
26% rise in college costs since Bush regime took office
"Christians" insinuating their agenda into the government
Government proposal to require mental health screenings for kids
Stolen elections
Criminals in the Bush family never getting arrested...
Democracy morphing into Fascism
Ignorance of Bush voters re: Saddam/9/11, WMDs

[SoCalDem]

62. AMEN

It has always griped me to no end, how they campaign on the same bloody problems we have had as a country FOREVER, yet they never actually "fix" the problems.. They get elected and immediately start legislating stuff they have NO BUSINESS legislating, and ignoring the very things that we send them there to FIX...

Maybe the public needs to take a different approach.. A "to-do" FIRST list, and only after they do the important stuff, can they go on to "pork" and naming buildings aftre each other:)