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KamaAina

(78,249 posts)
Wed Jan 28, 2015, 05:19 PM Jan 2015

How Did We Get Into This Mess? Down Syndrome is "Hell on Earth."

http://www.thismess.net/2015/01/down-syndrome-is-hell-on-earth.html

Austen Heinz is the typical silicon valley disruptor superstar. Edgy. Controversial. Disruptive.

In Austen Heinz’s vision of the future, customers tinker with the genetic codes of plants and animals and even design new creatures on a computer. Then his startup, Cambrian Genomics, prints that DNA quickly, accurately and cheaply....

Heinz and other scientists have years of technical hurdles to clear before they can create living, breathing humans from a plate of printed DNA. Such an act is not possible right now. But he doesn’t hide his enthusiasm about the possibility.

Is he essentially enabling eugenics? He rejects that term, which to him means government interference with reproductive rights. He insists that it differs from his approach, which he describes as allowing individuals to eliminate future suffering in a more humane way than abortion, “which is pretty barbaric.” “A decent percentage of people have really nasty mutations that cause really bad, horrible things,” like Down syndrome and cystic fibrosis, he said. “These are basically like hell on Earth, and I think it’s smart to be able to avoid those things.


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How Did We Get Into This Mess? Down Syndrome is "Hell on Earth." (Original Post) KamaAina Jan 2015 OP
I agree with you d_r Jan 2015 #1
I'm counting on it. KamaAina Jan 2015 #2
That is just plain creepy. HappyMe Jan 2015 #3
Right. Because it would be so creepy to eliminate Cystic Fibrosis, pnwmom Jan 2015 #24
This message was self-deleted by its author NuclearDem Jan 2015 #4
That's what concerns many of us. KamaAina Jan 2015 #5
Gene therapy and genetic engineering aren't eugenics. NuclearDem Jan 2015 #65
"unborn human being"?! KamaAina Jan 2015 #73
What on earth? Hell no I'm not anti-choice. NuclearDem Jan 2015 #74
Gene therapy is a hell of a lot different than this genetic engineering. KamaAina Jan 2015 #76
Oh for crying out loud, it was a poor choice of words. NuclearDem Jan 2015 #79
Clearly we can trust someone who thinks Down syndrome is a mutation jeff47 Jan 2015 #6
Down syndrome isn't a mutation? Egnever Jan 2015 #7
It's an extra 21st chromosome KamaAina Jan 2015 #8
Fair enough Egnever Jan 2015 #10
It IS a mutation though.... Adrahil Jan 2015 #13
The extra chromosome is the result of an "abnormal cell division." pnwmom Jan 2015 #28
It's an extra copy of chromosome 21. jeff47 Jan 2015 #9
Good catch! KamaAina Jan 2015 #11
Gattaca, here we come, apparently Spider Jerusalem Jan 2015 #12
+Gazillion JustAnotherGen Jan 2015 #51
It is eugenics Terra Alta Jan 2015 #14
But have you raised someone with mental Ilsa Jan 2015 #16
Many self-advocates view the R-word as akin to the N-word. KamaAina Jan 2015 #25
thank you. Terra Alta Jan 2015 #30
Some of my Socialist and Communist comrades had to educate me about using 'Paul-tard' for KingCharlemagne Jan 2015 #83
I have never considered the "R" word as a slur, Ilsa Jan 2015 #54
Up until a few years ago d_r Jan 2015 #62
You'll have to trust me on this, but MR is still being Ilsa Jan 2015 #70
oh I do not doubt that d_r Jan 2015 #78
It's not "colleagues" for me. I'm the parent. nt Ilsa Jan 2015 #80
In this case, it's being directed by those who ARE special populations. KamaAina Jan 2015 #75
If you take away the "R" word that Ilsa used and substituted the words you suggested madinmaryland Jan 2015 #68
The question was directed at Terra Alta KamaAina Jan 2015 #91
I have a genetic disorder myself Terra Alta Jan 2015 #26
Dear New Parents of a Baby With Down Syndrome, I Feel Compelled to Tell You This KamaAina Jan 2015 #31
thank you for sharing that. Terra Alta Jan 2015 #35
Ha! Here in California, "thank you for sharing that" is used ironically KamaAina Jan 2015 #37
lol, didn't realize that. Terra Alta Jan 2015 #38
Do you support a woman's right to choose an abortion? pnwmom Jan 2015 #34
I am unequivocally pro-choice, getting to choose whatever Ilsa Jan 2015 #53
I didn't see any reference to the scientist saying that anyone Ilsa Jan 2015 #52
Thank you for your painful honesty in your posts here. pnwmom Jan 2015 #60
most people don't know how hard it is unless they Ilsa Jan 2015 #69
Ilsa, thank you for the reality check. pnwmom Jan 2015 #32
I think knowing if there's an issue, then having the opportunity for Ilsa Jan 2015 #55
Do you also oppose amniocentesis followed by abortion or selective abortion? pnwmom Jan 2015 #23
As far as the abortion issue goes, KamaAina Jan 2015 #27
Women get information from their doctors, who can give them reliable information REP Jan 2015 #42
About those heart defects KamaAina Jan 2015 #44
That isn't the mentality that this whole thread is about. pnwmom Jan 2015 #46
I would hardly describe these as "medical procedures". KamaAina Jan 2015 #47
Then what are they and what exactly is your problem with them? pnwmom Jan 2015 #48
Both these measures seek to eliminate disability KamaAina Jan 2015 #77
Individual people should get to decide which of their defective genes they pass pnwmom Jan 2015 #88
That is a terribly broad assumption to make about Ilsa Jan 2015 #57
I am 100% pro-choice. Terra Alta Jan 2015 #33
Then why don't you support women having the same control over their pregnancy pnwmom Jan 2015 #36
90% of women, when they get a DS diagnosis, abort. AngryAmish Jan 2015 #41
might act out? laundry_queen Jan 2015 #63
Thank you for having open eyes and understanding that Ilsa Jan 2015 #71
Republicans and the rich are 'hell on Earth'. If we're going to genetically engineer, let's start KingCharlemagne Jan 2015 #82
I do sincerely hope you're kidding. NuclearDem Jan 2015 #84
Not kidding about Republicans and the rich being "hell on Earth" (both literally KingCharlemagne Jan 2015 #86
As a parent of a child with a chronic developmental Ilsa Jan 2015 #15
It seems to me that the real nightmare is hifiguy Jan 2015 #17
Thank you! People are passing judgment on this scientist's Ilsa Jan 2015 #18
There are at least two autistic people in this thread who disagree with you (n/t) Spider Jerusalem Jan 2015 #20
And one who agrees with her. Me. nt hifiguy Jan 2015 #39
I'm sorry that you think your existence is a mistake (n/t) Spider Jerusalem Jan 2015 #40
I don't but if I weren't here hifiguy Jan 2015 #43
The discussion isn't just about Down syndrome but eugenics in general, though. Spider Jerusalem Jan 2015 #45
But wouldn't anyone on this thread ecstatic Jan 2015 #67
And you have the ability to disagree with me because Ilsa Jan 2015 #58
Thank you. You said it much better than I could have. If I had the Nay Jan 2015 #22
He's stretching his résumé pretty thin. GeorgeGist Jan 2015 #19
If those techniques can eliminate diseases like Cystic fibrosis, I'm all for them. pnwmom Jan 2015 #21
Or Tay-Sachs, Sickle-cell, MS, etc. nt Ilsa Jan 2015 #59
Same here abelenkpe Jan 2015 #87
These rich brats should be the last to represent the human race genetically. Sociopathy is genetic. Dont call me Shirley Jan 2015 #29
married to a speech path who worked in a sheltered workshop she had full genetic testing dembotoz Jan 2015 #49
Message auto-removed Name removed Jan 2015 #50
What if there could have been that DS person or AS person, but without the impairment? raging moderate Jan 2015 #56
Temple Grandin (her you know) says that if science came up with a blue pill KamaAina Jan 2015 #89
I've been lucky enough to have a few people with DS in my life KMOD Jan 2015 #61
ugh! The road to hell paved with good intentions comes to mind loyalsister Jan 2015 #64
I know some artists with Down. Recursion Jan 2015 #66
Do you have a child with Down Syndrome? Just curious what precipitated this post. madinmaryland Jan 2015 #72
No, I do not. KamaAina Jan 2015 #90
I remember a Twilight Zone from years ago KamaAina Jan 2015 #81
Eugenics is inevitable LittleBlue Jan 2015 #85

d_r

(6,907 posts)
1. I agree with you
Wed Jan 28, 2015, 05:23 PM
Jan 2015

but I am afraid you will hear from liberals and progressives who view individuals with Down syndrome as less worthy.

pnwmom

(108,980 posts)
24. Right. Because it would be so creepy to eliminate Cystic Fibrosis,
Wed Jan 28, 2015, 07:24 PM
Jan 2015

Tay Sachs, and a host of other miserable diseases.

Response to KamaAina (Original post)

 

NuclearDem

(16,184 posts)
65. Gene therapy and genetic engineering aren't eugenics.
Wed Jan 28, 2015, 10:34 PM
Jan 2015

Forcibly sterilizing people with DS or CF, forbidding them from reproducing, or exterminating them is eugenics.

Treating a born or unborn human being with Tay-Sachs, CF, Down's, or Parkinson's through genetic modification is our best chance to eliminate this debilitating conditions.

People with these conditions are no less human than the rest of us, but they deserve a chance to live without Down's, CF or Parkinson's.

 

KamaAina

(78,249 posts)
73. "unborn human being"?!
Thu Jan 29, 2015, 12:10 AM
Jan 2015

Are you anti-choice?

And Parkinson's? Please show me a link that shows that anyone under, say, age 30 has ever had Parkinson's.

 

NuclearDem

(16,184 posts)
74. What on earth? Hell no I'm not anti-choice.
Thu Jan 29, 2015, 12:13 AM
Jan 2015

As for Parkinson's, I cited it as an example of conditions being successfully treated with gene therapy.

 

KamaAina

(78,249 posts)
76. Gene therapy is a hell of a lot different than this genetic engineering.
Thu Jan 29, 2015, 12:24 AM
Jan 2015

And "unborn human being" is something I'd expect to hear from Santorectum, not a DUer!

 

NuclearDem

(16,184 posts)
79. Oh for crying out loud, it was a poor choice of words.
Thu Jan 29, 2015, 12:35 AM
Jan 2015

As an aside, do some reading on germline gene therapy and tell me how that's not genetic engineering.

jeff47

(26,549 posts)
6. Clearly we can trust someone who thinks Down syndrome is a mutation
Wed Jan 28, 2015, 06:08 PM
Jan 2015

to give a thoughtful and well-considered opinion on what genetic manipulation can do.

 

KamaAina

(78,249 posts)
8. It's an extra 21st chromosome
Wed Jan 28, 2015, 06:19 PM
Jan 2015

technically "trisomy-21". A mutation involves an alteration of one or more of the genes that chromosomes carry.

pnwmom

(108,980 posts)
28. The extra chromosome is the result of an "abnormal cell division."
Wed Jan 28, 2015, 07:28 PM
Jan 2015

In layman's terms, a "mutation."

http://www.mayoclinic.org/diseases-conditions/down-syndrome/basics/causes/con-20020948

Down syndrome results when abnormal cell division involving chromosome 21 occurs. These cell division abnormalities result in extra genetic material from chromosome 21, which is responsible for the characteristic features and developmental problems of Down syndrome.

SNIP

Most of the time, Down syndrome isn't inherited. It's caused by a mistake in cell division during the development of the egg, sperm or embryo.

jeff47

(26,549 posts)
9. It's an extra copy of chromosome 21.
Wed Jan 28, 2015, 06:19 PM
Jan 2015

Having an extra copy of a chromosome is called trisomy.

An extra X or Y doesn't seem to do much beyond limit fertility.
An extra 21 causes Down syndrome.
An extra of every other chromosome results in a miscarriage or a baby that dies within a year.

 

Spider Jerusalem

(21,786 posts)
12. Gattaca, here we come, apparently
Wed Jan 28, 2015, 06:19 PM
Jan 2015

as a high-functioning autistic I find this sort of talk of eugenics to be deeply unpleasant. (And yes, what he's talking about is in fact eugenics; it's exactly the sort of selective breeding for the "good of the race" that people like Francis Galton had in mind.)

Terra Alta

(5,158 posts)
14. It is eugenics
Wed Jan 28, 2015, 06:28 PM
Jan 2015

and is wrong, IMO.

I've met several people with Down Syndrome, they are all very loving people who are not "hell on Earth", the Earth is a much better place because of these kind individuals.

Ilsa

(61,695 posts)
16. But have you raised someone with mental
Wed Jan 28, 2015, 06:50 PM
Jan 2015

Retardation issues? Behavior issues related to their MR? It isn't an easy life. And there are people with DS that are frustrated by their own limited abilities.

Would you deny curing other maladies that prevent people from being able to defend themselves, or doing activities of daily living without assistance, to name a few?

 

KamaAina

(78,249 posts)
25. Many self-advocates view the R-word as akin to the N-word.
Wed Jan 28, 2015, 07:25 PM
Jan 2015

The preferred terminology is "intellectual disability" or "cognitive disability".

http://www.r-word.org/

Terra Alta

(5,158 posts)
30. thank you.
Wed Jan 28, 2015, 07:30 PM
Jan 2015

I abhor the r-word and never use it. Maybe it was a common medical term at one time but it has been turned into a slur against the mentally disabled.

 

KingCharlemagne

(7,908 posts)
83. Some of my Socialist and Communist comrades had to educate me about using 'Paul-tard' for
Thu Jan 29, 2015, 12:56 AM
Jan 2015

followers of Ron and Rand Paul a few years ago. I now use the more appropriate "Paul-bot," so as to avoid slurring the cognitively disabled or tarnish them by comparison with the odious Paul Klan.

Definitely agree that Dems should no longer be using the 'R-word' even to insult the fascists.

Ilsa

(61,695 posts)
54. I have never considered the "R" word as a slur,
Wed Jan 28, 2015, 09:47 PM
Jan 2015

just a medical/psych term. "MR" is still used by teams (speech therapists, etc) in special needs/special education classes, without judgment.

I hate the idea that our terminology gets to be directed by those who ridicule special populations. How long will it be before those two phrases are no longer PC?

d_r

(6,907 posts)
62. Up until a few years ago
Wed Jan 28, 2015, 10:28 PM
Jan 2015

you would be correct.

Rosa's law was passed by congress in 2010.

Since then the Department of ED and other federal agencies have changed their use of terms.

It is no longer used in special needs / special education classes by individuals who are familiar with current terminology.

Ilsa

(61,695 posts)
70. You'll have to trust me on this, but MR is still being
Wed Jan 28, 2015, 11:33 PM
Jan 2015

Used. But like I said, just as a term, not a slur, and for some people it conveys a more specific definition of an IQ of around 70.

d_r

(6,907 posts)
78. oh I do not doubt that
Thu Jan 29, 2015, 12:33 AM
Jan 2015

there are people who still use it, but it really is time that they stop. It is not consistent with current educational policy, federal law, dsm-5 diagnosis, or WHO for that matter.

Also, a definition of an IQ of around 70 is no longer the sole criteria for diagnosis. So the use of the former definition is no longer correct.

Your colleagues might benefit if you would pass this along to them. http://www.dsm5.org/documents/intellectual%20disability%20fact%20sheet.pdf

 

KamaAina

(78,249 posts)
75. In this case, it's being directed by those who ARE special populations.
Thu Jan 29, 2015, 12:18 AM
Jan 2015

A few years ago, I went to a conference in DC. When I went into the auditorium for the keynote (by Martin Luther King III!!), all the seats were covered with flyers urging the then-AAMR (American Assn. of you-know-what) to change its name.

As we settled in, a chant arose. "Change the name! Change the name! Change the name!"

And shortly thereafter, they did. It is now the American Assn. for Intellectual and Developmental Disabilities.

madinmaryland

(64,933 posts)
68. If you take away the "R" word that Ilsa used and substituted the words you suggested
Wed Jan 28, 2015, 10:59 PM
Jan 2015

can you answer Ilsa's question?

TIA.

Terra Alta

(5,158 posts)
26. I have a genetic disorder myself
Wed Jan 28, 2015, 07:26 PM
Jan 2015

neurofibromatosis type 1, I also have a seizure disorder and mental health issues related to my NF. I might have a mild form of autism myself although I've never officially been diagnosed. Would I say my life is easy? I'll admit is isn't all of the time. I'm on medication that makes my life very manageable, I'm able to drive, work full-time, manage my money wisely, and do things without the assistance of others. I would like the same for others, but this is not the way to do it, IMO.

I'm not opposed to a cure, I'm opposed to people thinking people with Down Syndrome, autism, or any type of developmental disability is somehow inferior to those without mental developmental disorders.

 

KamaAina

(78,249 posts)
31. Dear New Parents of a Baby With Down Syndrome, I Feel Compelled to Tell You This
Wed Jan 28, 2015, 07:33 PM
Jan 2015

This just turned up in my FB feed. What exquisite timing!

http://themighty.com/2015/01/dear-new-parents-of-a-baby-with-down-syndrome-i-feel-compelled-to-tell-you-this/

If you’ve found this place, you may have just discovered that your baby has Down syndrome. You’re likely standing at a fork in the road. Whether your baby has been born yet or not, you’ll need to make choices now, in action or thought, that will change you forever....

What’s done is done. Down syndrome has entered your life and that will never change, no matter what happens down the road. For that, I consider us connected. No matter what the future holds, what twists and turns your life follows, we will always have that in common. You are not alone.

My baby was in my arms when I discovered his Down syndrome. In a flash, all I thought I ever knew fell away. I didn’t know how to continue. No one had written me a script. No one had told me what lay ahead. I thought I stood at the edge of a vast, terrifying wilderness with nothing. I was so wrong.

Instead, it felt more like shedding a skin. I shed old ideas, thoughts, assumptions that I’d accepted as truth, only to emerge a truer, clearer self. Shedding that skin was intense and painful for me yet so necessary to reveal the next person I would become. I had no script because I wasn’t meant to have one. I was writing it as I went along, and each time I shed a new skin, I add to my narrative. I’ve only been at this for a short time so far; I have a lot of work ahead of me, that I know.
 

KamaAina

(78,249 posts)
37. Ha! Here in California, "thank you for sharing that" is used ironically
Wed Jan 28, 2015, 07:43 PM
Jan 2015

much like "Well, bless your li'l ole heart!" down South.

Example: Someone who just came back to work is discussing her stomach flu symptoms in the lunchroom. "Thank you for sharing that!"

pnwmom

(108,980 posts)
34. Do you support a woman's right to choose an abortion?
Wed Jan 28, 2015, 07:36 PM
Jan 2015

If so, then why wouldn't you support her right to control her pregnancy from the outset?

Ilsa

(61,695 posts)
53. I am unequivocally pro-choice, getting to choose whatever
Wed Jan 28, 2015, 09:39 PM
Jan 2015

Route suits herself best, including medical intervention or no intervention for the pregnancy.

Ilsa

(61,695 posts)
52. I didn't see any reference to the scientist saying that anyone
Wed Jan 28, 2015, 09:37 PM
Jan 2015

is inferior or unworthy. It looked to me like he was somewhat ineloquent, but wanting a better life for everyone.

I'm glad you've been able to persevere in spite of your chronic problems. But I'm saddened to know that another good person has to try twice as hard or more to endure an already difficult life. Because life is hard for most people, I think, and requires a lot of courage. My son will always be dependent on others for even day-to-day survival.

pnwmom

(108,980 posts)
60. Thank you for your painful honesty in your posts here.
Wed Jan 28, 2015, 10:26 PM
Jan 2015

It's nice to idealize the situation of parents with Downs Syndrome children, but I think few among us would honestly choose to have a DS child if they could have the same child without the disorder.

Ilsa

(61,695 posts)
69. most people don't know how hard it is unless they
Wed Jan 28, 2015, 11:26 PM
Jan 2015

Work within the disability community, such as in teaching, therapy, etc. We are too busy trying to hold it together to present ourselves as a large contingent. Many parents that I know are homebound with their kids because of behavior issues.

pnwmom

(108,980 posts)
32. Ilsa, thank you for the reality check.
Wed Jan 28, 2015, 07:35 PM
Jan 2015

Funny that the same people who would never deny a woman her "right to choose" think it so awful that someone would develop a technique that would avoid genetic defects and reduce the need for future abortions.

Or maybe it's not. Maybe they'd rather women have abortions than have healthier embryos in the first place.

Ilsa

(61,695 posts)
55. I think knowing if there's an issue, then having the opportunity for
Wed Jan 28, 2015, 09:51 PM
Jan 2015

Correcting a medical problem, or not, or having an abortion, or not, is the goal women should strive for. Many will rightfully choose to do nothing other than have the pregnancy continue as is. Many will rightfully choose gene or other therapy or abort. They are all right if they are allowed to make the decision they can live with.

pnwmom

(108,980 posts)
23. Do you also oppose amniocentesis followed by abortion or selective abortion?
Wed Jan 28, 2015, 07:20 PM
Jan 2015

Do you support a woman's right to choose, or not?

P.S.

It's not eugenics. It's not discouraging reproduction; it's encouraging reproduction among people who would otherwise be worried about defects in their genome.

Dictionary.com

Eugenics: the study of or belief in the possibility of improving the qualities of the human species or a human population, especially by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics)

 

KamaAina

(78,249 posts)
27. As far as the abortion issue goes,
Wed Jan 28, 2015, 07:27 PM
Jan 2015

I believe the problem lies with women getting inadequate counseling after getting the amnio results. They should be getting information about Down's or whatever condition is involved from someone who has it, not from some doctor who likely agrees with this guy about "hell on Earth".

REP

(21,691 posts)
42. Women get information from their doctors, who can give them reliable information
Wed Jan 28, 2015, 07:58 PM
Jan 2015

Down's Syndrome is associated with a 500% higher risk of a type of leukemia; congenital heart defects; Alzheimer's Disease; gastronomical problems and congenital defects; ear and eye problems; etc. There is no way to predict the level of cognitive of impairment, which ranges from profound to moderate, or if the child will outlive the parents - or live a mere weeks.

Having real information about these serious matters is important.

 

KamaAina

(78,249 posts)
44. About those heart defects
Wed Jan 28, 2015, 08:11 PM
Jan 2015

Did you know? Some transplant centers refuse to accept patients with Down's, citing some BS about how "they can't follow the complicated aftercare regimen".

That is the kind of mentality this whole thread is about, and it seems to be rampant within the medical profession.

pnwmom

(108,980 posts)
46. That isn't the mentality that this whole thread is about.
Wed Jan 28, 2015, 08:21 PM
Jan 2015

You think it's wrong to try to eliminate certain conditions caused by genetic defects by using medical procedures at the outset of a pregnancy -- but you're okay with abortions after an amniocentesis reveals the same genetic conditions.

This doesn't make a lot of sense to me.

 

KamaAina

(78,249 posts)
47. I would hardly describe these as "medical procedures".
Wed Jan 28, 2015, 08:23 PM
Jan 2015

Unless, of course, you believe that life begins at conception, which I sincerely doubt.

pnwmom

(108,980 posts)
48. Then what are they and what exactly is your problem with them?
Wed Jan 28, 2015, 09:03 PM
Jan 2015

Why is taking these measures before combining sperm and egg worse than having a selective abortion after amniocentesis?

I knew a couple who had a daughter with Cystic Fibrosis, who managed to live -- and suffer -- till the age of 30. They never had a second child because the first was a full-time job. Any other child would either have Cystic Fibrosis, too -- or would have to take second place to a sick child who needed so much attention.

I'm sure the relatives in that family would have been happy to have access to a procedure that would ensure that they could have children without fear that they would end up in the same position.

 

KamaAina

(78,249 posts)
77. Both these measures seek to eliminate disability
Thu Jan 29, 2015, 12:31 AM
Jan 2015

which many of us view as a natural part of the human experience.

Who gets to decide what traits get selected out? What next after disability?

pnwmom

(108,980 posts)
88. Individual people should get to decide which of their defective genes they pass
Thu Jan 29, 2015, 01:34 AM
Jan 2015

on to their children or not, if there are safe forms of technology that would allow them to do so -- just as individual women should be able to choose to have an abortion, for whatever reason.

Your questions could as easily be applied to abortions. Who gets to decide who gets one and why? What next after abortions? That is the right-to-lifers viewpoint, and it sounds like yours.

Ilsa

(61,695 posts)
57. That is a terribly broad assumption to make about
Wed Jan 28, 2015, 09:55 PM
Jan 2015

OB doctors. And no one has an abortion the next day. They have time to get additional information from other sources as well as the slew of resources offered by the dr's office.

Terra Alta

(5,158 posts)
33. I am 100% pro-choice.
Wed Jan 28, 2015, 07:35 PM
Jan 2015

I support a woman choosing to terminate her pregnancy for whatever reason. However, many women do find out they have a child with Down Syndrome or another developmental disability and choose to go through with the pregnancy anyway. Most of the time they find these children bring them much joy and happiness. Sure, the child might have moments where they might act out, but what child doesn't? I don't think people with developmental disabilities are inferior to neurotypical people in any way.

pnwmom

(108,980 posts)
36. Then why don't you support women having the same control over their pregnancy
Wed Jan 28, 2015, 07:39 PM
Jan 2015

from the outset, with the tools that are available to them? If , through scientific methods, parents can avoid genetic conditions in a baby that are more than they feel they can handle, why would that be worse than having an abortion once they knew the health status of a fetus?

 

AngryAmish

(25,704 posts)
41. 90% of women, when they get a DS diagnosis, abort.
Wed Jan 28, 2015, 07:51 PM
Jan 2015

Folks are voting with their feet. Or their curettes.

laundry_queen

(8,646 posts)
63. might act out?
Wed Jan 28, 2015, 10:29 PM
Jan 2015

You clearly don't know anyone raising a child with Down syndrome. A close relative of mine has a child with DS, which was a surprise as it wasn't detected with routine screening and she was in her 20's. Her DS child has had multiple intestinal surgeries with countless emergency room visits as well as other health scares, she's disappeared on them many times causing large police searches, she requires 24/7 supervision at age 10. My relative is worried sick that something might happen to her child because she has zero impulse control and gets into everything and is not as capable as her 2 year old brother of learning what not to touch. It's not that my relative doesn't love her child or that she isn't thankful she has her. It's the day-to-day severe difficulties that most people are totally ignorant about. My relative has spent thousands of dollars every year to get her child the best therapies, has little to no help from any government agency, relies on her retired parents far too much and is constantly frazzled and anxious. She dares not think about the future because it breaks her heart. She can only hope her younger child will take on his sister's care when her and her husband are no longer able to.

When my relative had her second child, she underwent amniocentesis knowing that if the results showed another child with DS, she was fully prepared to abort. It's not that she sees her first child as 'less than' or that she doesn't have joy from her. But if she had to choose, she wouldn't have chosen for her child to suffer this genetic defect. It's not just the child who suffers either - it's the entire family.

Same goes for cystic fibrosis. Who wouldn't want to end that horrible disease from occurring in the first place? I'm sure parents of CF kids love their kids, find joy in them and are thankful for them. I also best that most, if they could have prevented giving birth to a child with CF in the first place, would've chosen to do so.

I really think that so many people without special needs children just do not get it. They don't understand the heartache, the stress, the financial cost...everything. They don't get it.

Ilsa

(61,695 posts)
71. Thank you for having open eyes and understanding that
Wed Jan 28, 2015, 11:37 PM
Jan 2015

this thread isn't about eugenics. It's about having information and choices in therapy to make the best decision.

People on this thread are assuming the scientist is a monster for wanting to cure devastating disabilities.

I'm sorry your relative is having such a tough life. I understand her fears.

 

KingCharlemagne

(7,908 posts)
82. Republicans and the rich are 'hell on Earth'. If we're going to genetically engineer, let's start
Thu Jan 29, 2015, 12:49 AM
Jan 2015

by going after anti-social personality disorder (that'll capture 99% of the current Republican cohort and the remaining 1% are on their way to leaving the party to become Independents or Democrats anyway).

 

KingCharlemagne

(7,908 posts)
86. Not kidding about Republicans and the rich being "hell on Earth" (both literally
Thu Jan 29, 2015, 01:24 AM
Jan 2015

and figuratively). Partially kidding about my "if . . . then" clause. But ASPD is genetic and, like color blindness, presents in men 6x as frequently as it does in women. As a genetic condition, ASPD may indeed be 'treatable' at some point in the future.

Ilsa

(61,695 posts)
15. As a parent of a child with a chronic developmental
Wed Jan 28, 2015, 06:33 PM
Jan 2015

condition, I hope there are cures, even genetic cures. This doesn't mean I see disabled people as "less than" or unworthy. I think his choice of words was poor. There are some physical conditions that are "hell" because of what the children and parents have to go through to medically/surgically fix them. I'm not certain that DS is one of them, but don't assume parents of DS kids feel lucky because the kids are always sweet, like puppies. These kids have behavior issues like anyone else. Raising a child with MR issues is exhausting, frustrating, challenging, and financially draining.

The problem is that disabling conditions are expensive to treat, it's hard on families, we worry about our children being able to protect themselves, and saving for the future is almost impossible. Medicaid doesn't guarantee they get the best doctors or medicine, and the safety net disappears for them first. Just look at what Congress wants to do now-- cut disability benefits 20%.

If this man's work means my child is in the last generation of children born with autism, I'll be thrilled and envious.

On edit: FYI, some Down Syndrome issues include cardiac abnormalities that can require surgery, etc.

 

hifiguy

(33,688 posts)
17. It seems to me that the real nightmare is
Wed Jan 28, 2015, 07:01 PM
Jan 2015

that the kids will outlive their parents. Then what?

There was a story posted here on DU not long ago (DU search seems to be malfunctioning or I'd post the link) that told the story of a British family and the horrendous difficulties they had with a DS adult child. It's not an issue that can be dismissed, for all the reasons you discuss.

Ilsa

(61,695 posts)
18. Thank you! People are passing judgment on this scientist's
Wed Jan 28, 2015, 07:11 PM
Jan 2015

Mission because he wasn't eloquent enough in his interview.

His research may lead to preventing Tay-Sachs, Sickle-cell anemia, MS, Huntington's, ALS, and many other debilitating Fucking hell on earth diseases and chronic disabilities. Yet some people on DU that met a couple of people with DS think they are morally superior to someone who is actually trying to SOLVE THE PROBLEM.

 

hifiguy

(33,688 posts)
43. I don't but if I weren't here
Wed Jan 28, 2015, 07:59 PM
Jan 2015

I wouldn't even have to consider the question. It would be moot.

Though there's a substantial difference between spectrum disorders and DS. People on the spectrum have a wide range of intellectual abilities ranging from classic Kanner's autism on the low end to people who are very smart but somewhat socially awkward/odd, the Asperger's/HFA crowd. I happen to fall in that latter group. DS not so much.

And, to refer to the discussion above, it is profoundly none of my business to tell any woman facing a pregnancy involving these issues what to do, ever.

 

Spider Jerusalem

(21,786 posts)
45. The discussion isn't just about Down syndrome but eugenics in general, though.
Wed Jan 28, 2015, 08:11 PM
Jan 2015

And with regard to ASDs in particular, recent research:

A major study of autism in families has found that brothers and sisters who have the condition often carry different genetic risk factors that make them prone to the disorder.

Research on 85 families found that siblings with autism had the same genetic risk factors less than one third of the time. In nearly 70% of cases, tests on the siblings revealed little or no overlap in the mutations known to contribute to the condition.

The findings challenge the presumption that the same genetic risk factors are at work when autism runs in families. “We knew that there were many differences in autism, but our recent findings firmly nail that down,” said Stephen Scherer at the University of Toronto.

“This means we should not be looking just for suspected autism-risk genes, as is typically done in diagnostic genetic testing,” Scherer added. Instead, he said a full assessment of a person’s genome was needed if genetic information was ever going to inform their treatment.

http://www.theguardian.com/science/2015/jan/26/autism-cases-same-family-often-carry-different-genetic-risk-study


ecstatic

(32,707 posts)
67. But wouldn't anyone on this thread
Wed Jan 28, 2015, 10:54 PM
Jan 2015

be considered extremely high functioning?

I think... actually I'm sure that this article is referring only to low functioning /"hell on earth" / life destroyed cases.

Ilsa

(61,695 posts)
58. And you have the ability to disagree with me because
Wed Jan 28, 2015, 10:02 PM
Jan 2015

you are high-functioning. Not all autistics have this luxury. Some cannot manage the activities of daily living without assistance.

Yes, if there had been a cure available, I would have sold my last possession to make my child able to function at least to the point where he won't step in front of a moving car. I don't care if someone would condemn me for taking advantage of a genetic intervention.

Nay

(12,051 posts)
22. Thank you. You said it much better than I could have. If I had the
Wed Jan 28, 2015, 07:19 PM
Jan 2015

chance to NOT have my unborn child have DS, would I choose a genetic cure in utero or at conception? You bet yer ass I would. No contest. That doesn't mean I don't think a DS child is not human, for heaven's sake.

pnwmom

(108,980 posts)
21. If those techniques can eliminate diseases like Cystic fibrosis, I'm all for them.
Wed Jan 28, 2015, 07:18 PM
Jan 2015

Even in the case of Downs Syndrome, why would this technique be more immoral than selective abortion of embryos?

dembotoz

(16,807 posts)
49. married to a speech path who worked in a sheltered workshop she had full genetic testing
Wed Jan 28, 2015, 09:14 PM
Jan 2015

for our son....always thought it was because she had grown the know my gene pool.

anyway
had the testing turned up abnormalities she would have aborted on the spot.
and i 100% supported her decision.

Response to KamaAina (Original post)

raging moderate

(4,305 posts)
56. What if there could have been that DS person or AS person, but without the impairment?
Wed Jan 28, 2015, 09:52 PM
Jan 2015

When I was working in the public schools, many years ago, there was this boy with Down's Syndrome. He was friendly, sensitive, and always very helpful with some kids who had severe impairments. This boy was conscientious and hard working. During his entire elementary school career, he had INSISTED on spending a couple of hours every day on what he called his homework. He filled line after line on page after page of lined notebook paper with meaningless connected loops, the exact size of cursive writing. It seemed futile but harmless. Everyone liked him, and nobody wanted to upset him by thwarting his efforts to emulate the work of the unimpaired students around him.
Then, when this boy turned 16, suddenly HE LEARNED HOW TO READ AND WRITE. Not very long words or sentences, but enough to read some signs, enjoy some books, and leave some notes. Imagine the shocked joy of all the adults in his life. Those years of "useless" pre-writing practice had trained his hand to form letters small enough to be functional. Even with that Down's Syndrome impairment, this boy came up with a learning strategy for himself that was BRILLIANT.
I am glad that this boy is in this world, a man now, I suppose. I bet he is doing some very useful work and maintaining some very fine friendships. But I wish, with all my heart, that that chromosome hadn't ripped in him. Imagine what such a person could have accomplished with all of his chromosomes intact.
Maybe these scientists can learn to prevent these little anomalies. Maybe they can figure out how to thwart the factors that cause these harmful mutations.

 

KamaAina

(78,249 posts)
89. Temple Grandin (her you know) says that if science came up with a blue pill
Thu Jan 29, 2015, 01:17 PM
Jan 2015

that would "cure" her autism, she wouldn't take it. She'd be afraid that the abilities that have propelled her to the top of the livestock facility design field would disappear.

 

KMOD

(7,906 posts)
61. I've been lucky enough to have a few people with DS in my life
Wed Jan 28, 2015, 10:26 PM
Jan 2015

Emily Perl Kingsley wrote this beautiful essay in 1987.

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

loyalsister

(13,390 posts)
64. ugh! The road to hell paved with good intentions comes to mind
Wed Jan 28, 2015, 10:34 PM
Jan 2015

"allowing individuals to eliminate future suffering" is a large part of the spirit behind the Buck vs. Bell ruling that ruled that involuntary sterilization was acceptable. It doesn't get much more anti- choice than that.

"We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind." - Oliver Wendell Holmes.

The eugenics movement here and abroad would never have had the kind of impact it had if not for the people who implicitly supported creating a master\superior race in the name of preventing suffering. Anytime the conversation turns to improving the species, history of eugenics and the full agenda behind improving the biological condition of the human species should not be forgotten.

Recursion

(56,582 posts)
66. I know some artists with Down.
Wed Jan 28, 2015, 10:39 PM
Jan 2015

I can't say that A) the world would be a better place without them or B) they would be "better off" if they hadn't been born.

 

KamaAina

(78,249 posts)
90. No, I do not.
Thu Jan 29, 2015, 01:20 PM
Jan 2015

But many of us in the Autistic community (no, that is not an oxymoron ) fear that these eugenics tools will be wielded against us, especially given the rhetoric coming from Autism $peaks.

 

KamaAina

(78,249 posts)
81. I remember a Twilight Zone from years ago
Thu Jan 29, 2015, 12:42 AM
Jan 2015

in which a woman was seeking the perfect sperm donor. She settled on a decorated astronaut.

All was well, until she met the astronaut's brother, Johnny. "This is Johnny. Johnny likes flowers."

Yup, Johnny had an obvious intellectual disability. What is a poor girl to do?

 

LittleBlue

(10,362 posts)
85. Eugenics is inevitable
Thu Jan 29, 2015, 01:19 AM
Jan 2015

No matter what beliefs you hold, it is inevitable that genetically engineered human beings will be a reality. The process will start with the wealthy testing genetic markers in embryos and proceed to something like genetic manipulation aka custom babies.

US parents will act appalled until they realize that little Johnny down the street, genetically engineered, has an advantage over their own child in school. Although I think China will lead the way as they have no moral objection to such a practice.

Part of that process will involve testing for these genetic disorders and eliminating them.

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