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Will Down Syndrome Disappear?

Will Down Syndrome Disappear?

Currently, when expecting parents learn that their fetus has Down Syndrome, 85 – 90% choose to terminate the pregnancy.  Today’s Time magazine reports about a new blood test that, by analyzing an expecting mother’s DNA, can detect Down Syndrome in 98% of cases. And, it is suggested, if people know their fetus has Down Syndrome, they will decide not to have that child—and then there will be fewer and fewer individuals with Down Syndrome.

Down Syndrome (also trisomy 21) is a developmental disorder that causes lifelong mental retardation, developmental delays and other problems. Currently, pregnancy mothers are screened to see if their child might have Down Syndrome through amniocentesis or chorionic villus sampling (CVS); amniocentesis carries a 0.5 to 1.0% of miscarriage. Pregnant women can also be tested using ultrasound nuchal translucency screenings, which measure the amount of fluid at the back of a fetus’ neck; this test offers ‘odds that a woman is carrying an affected fetus.’ 

The new blood test, developed by researchers in Hong Kong, is said to be more accurate, but is currently too expensive to be widely used:

To figure out whether the DNA blood test works, the researchers — led by Dennis Lo at The Chinese University of Hong Kong — used DNA technology to analyze blood from 753 pregnant women in Hong Kong, Great Britain and the Netherlands who were considered at high risk of having a baby with Down syndrome. Testing revealed that 86 women were carrying an affected fetus. Other blood tests available to detect the condition carry the risk of false positive results, which results in anxiety and unnecessary further testing, but the DNA-based blood test is highly accurate, according to results of the research, which was published this week on the website of the British Medical Journal.

Regarding the ethical implications of such a prenatal test, Time magazine quotes Brian Skotko, a doctor in the Down syndrome program at Children’s Hospital Boston who also chairs the clinical advisory board for the National Down Syndrome Society:

“This test brings a lot of anticipation and welcome benefit, but it ushers in a whole host of provocative questions,” 

…….“Will babies with Down syndrome slowly disappear, then babies with trisomy 18 and trisomy 13?…..As a clinician, I raise it as an open question. It’s a question of which forms of life are valuable.”

As the mother of a son with disabilities (autism), I can say that life raising a child with neurological challenges has been, well, quite challenging. I have had to learn a great deal to best take care of Charlie and while it has meant that things are not as I thought they might be, my husband, Jim Fisher, and I know that we cannot imagine life without him. We know that our lives are good, are better, because of him.

Prenatal genetic testing presents us with ethical issues that we’re not at all equipped to face. Are we going to start making judgments about some humans being ‘worth more’ or ‘more valuable’ than others, rather than acknowledging and accepting the full range and beauty of human diversity and difference?

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90 comments

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9:12AM PDT on May 21, 2012

My daughter has 13q minus syndrome. While the years have been very trying, exhausting etc. I blame most of it on the doctors and teachers I have had to deal with. My daughter was born back when abortion was illegal, but I am sympathetic with the people who choose that option. Some people are not financially able, or otherwise able to have handicapped children and just having them to ignore a lot of their needs or giving them up to an institution is not a great alternative. We have been lucky in that I was able to stay home and take care of her. My husband supported our money and health care needs. Thus I was able to sit with her for hours every day in order to teach her to eat. I could not have done that and held down a job.

2:22PM PDT on Aug 16, 2011

As a person who has cared for citizens with Down syndrome, I have taken care of people whose family just tossed them out because they have not the time or the inclination to care for them. I have also seen aging parents who took care of their kids all their lives and are worried about how they would fare when they could no longer do so. The states involved help with the most minimum assistance they can. In CT, they over regulate each moment of their lives. In southern states like Texas(thanks to Mr Perry), they treat them worse than any other state I have seen.
No, they will not rule the world. But Down syndrome and other anomalies will not disappear.
Neither will mentally ill and at the bottom of the living standard people. Especially if we are disallowed birth control and pregnancy education to our young adults in school. Or abortion for those people when denied those resources.
This country is being handed over to the churches here. We will soon lose our reproductive rights, our Women's rights and probably even be eating Soylent Green if the republicans and the extreme right wing churches are allowed their way.

8:13AM PDT on Aug 15, 2011

If I have a child with Down Syndrome or any disability, I would not get rid of him/her because not every child is perfect and I believe that for some reason that God gave me that child(ren) for a particular reason.

8:13AM PDT on Aug 14, 2011

so, if we had people with down's syndrom and retardation rule the world, it will be utopia? a woman with down's syndrom in office, the'll be no debt? other nations will see our greatness and go "awwwwwwwwwwwwwwwwwwwwwwwww", and they won't have wars?

i guess I don't know many with this condition. But lower functioning people can't and shouldn't rule the world.

sorry, but I'll be a troll bully and say "no, bad idea. they can't do this, a woman teaching first grade reading means nothing , in contrast to governing a nation.

all crime and corruption will be gone? I guess a president alone dosen't balance the budget.

what if our allies are in trouble?

or "it dosen't matter, hurpaderp! all our polititions have low IQ's and are heartless monsters"

why not have a 16 year old old genius in office?

12:59PM PDT on Jul 5, 2011

That a person with Down syndrome could rule the earth and bring peace is one of those Catholic
fantasies about angels and innocence. On the other hand it is a metaphor in place of what the hoary philosophers said about the first deadly sin of pride, Hubris. The question is raised as to whether we can control our own destiny without messing with others'. The teaching is that the least of these is at the right hand of God. Being an inveterate skeptic I read much of Dawkins but only today I find out about intemperate and nasty comments on personal subjects he made at a meeting of Atheists. Would I never have been born than to keep on hearing about the scandals of people putting on the face of greatness but practice banality.

12:30PM PDT on Jul 5, 2011

Why on earth would you think we must have a woman with Down Syndrome to achieve peace on earth? Since all of these people have some degree of physical damage, and since good health is a key component of "electability"....how do you think she could ever be sent to high political office?

I'm glad your granddaughter is functioning but there are undoubtedly more DS people who cannot. And I'll say it again...NOBODY has the right to criticize ANYONE who decides to termindate a DS pregnancy! Just mind your own business.

11:26AM PDT on Jul 5, 2011

Wouldn't the world be a nicer place if the president of the US was a female down syndrome person. Peace on Earth, at last. I have such a granddaughter and she is pure delight. What a treat. Challenges yes but that's life. I've already lost two daughters so I hang on to everything I've got. What the hell is this notion of perfection? Do you think you are perfect? Nobody is.

7:39AM PST on Feb 22, 2011

If one has a child with ANY disability, it is something, that as a parent, you must deal with -- that child is your child, and a human being. But to say that, if given the knowledge of whether to carry to term, a disabled child, I think most people (I, certainly) would choose to abort the damaged fetus. Life is hard enough without purposefully injecting another problem into one's life.

I have known several Down's children and adults, and their personalities are sweet and delightful, but ... it also makes life hard, not only for the parents, but also for the other siblings. So much time and attention and resources go to that one child, that the others are slighted. If one has no choice, much can be learned through selflessly giving, but I wouldn't purposefully birth a Down's child, if I knew in the first trimester.

12:35AM PST on Jan 23, 2011

I would never abort for downs, autism, etc. If it was a congenital heart problem that I knew I'd lose my baby within 6 months of birth, maybe... I guess it's up to each set of parents, but I can't imagine aborting your own baby because (s)he is not perfect. To me, my 10 year old son is perfect just the way he is, I wouldn't change a thing. We have our issues, but that's okay.

11:16PM PST on Jan 22, 2011

noted

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