Eliminating Down syndrome population: A good thing?
March 12th, 2009
Would it be a good thing if new, more accurate blood tests could help bring about the elimination of all people with Down syndrome from the population? In answer to that question, bioethicist Art Caplan of the University of Pennsylvania tells Good Day Philadelphia on Fox 29 News he’s not sure. A partial transcript:
Caplan: A lot of people would say look, Down syndrome — it’s a disability but the child doesn’t suffer. Down syndrome children are normally pretty happy, loving, caring. And on the other hand, people are gonna say wait a minute. I should have the right to get a test, and if I do or don’t want to have a child with a disability, that’s up to me.
… I think what we’re going to have to insist upon is good counseling. if you just take the test and someone says oh, you have a child who’s going to be disabled, you’re not hearing, you know, Down’s kids may be something that you can live with, they are great to have in the family.
So I think it’s important to have somebody counsel you in the test. And what I’m worried about is that we don’t mandate counseling to go with testing, just to give the full picture …
Host John Anderson: Now there some out there who say okay, let’s do the test because if this works, we can get the Down syndrome population down to practically nothing. And we’re all for a healthier lifestyle. But is that realistic — to think that we would eliminate this type of population?
Caplan: I’m not sure it’s realistic. I’m not sure it’s good.
See video here.
Comments, readers? What’s your take?
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April 5th, 2009 at 5:48 pm
I’m not a talking about the value of someone of someone with a disability. I think Hitler was an asshole ( now there is someone who should have been nuked ) and connecting Bernie Madoff’s wrong doing with the harmlessness of some with a disability is hardly relevant.
I’m saying has anyone thought, beyond outrage and the love for your loved ones, what we’re all going to do with over 7 times the population of, for instance, people with DS if that is how it plays in the next
40+ years ? That’s the question. My only ‘answer ‘ is to have less babies, which would make everything better for everyone anyways. Any thoughts ?
April 3rd, 2009 at 1:30 pm
Bloop,
So we shouldn’t eliminate the entire population – just most of it?
April 3rd, 2009 at 12:40 pm
The question here is: whose life is unworthy of life? That was Adolph Hitler’s take on the issue. How depressing to see the medical community espousing the views of the Nazis.
The hypocrisy of prenatal testing is overwhelming: fetuses with Down’s and spina bifida are considered by the medical profession to be unworthy of life and yet the level of disability is extremely variable and there are disabilities which are far more debilitating, but they cannot be detected in utero.
When those disabilities are diagnosed, if you follow the medical establishment’s thinking, then those persons should be euthanized, too. And if the pressure on parents to prenatally test and terminate pregnancies when the babies have DS or spina bifida continues, I think it is inevitable societal pressure to ‘enforce’ euthanasia for anyone with what others consider a disability is the inevitable road we are on.
The most destructive person I’ve ever known, the unhappiest one, the person who has done the most to make everyone around her unhappy and has never led a ‘useful life’ is my older sister. She has a genius IQ and narcissistic personality disorder.
Maybe she should never have been born. Yet the ‘lack of value’ of her life was only detectable once she was an adult – and her diagnosis cannot be medically proven.
How can you judge the value of someone else’s life before they have even started it?
And just for the record, as a parent who posted previously describes his child’s physical suffering, our daughter is an adult. She broke her ankle once and had a slight heart problem, spent a night in the hospital to be operated on, was home the next day. She has had the chicken pox and 4 or 5 colds in her 20+ years. I should be so lucky.
April 3rd, 2009 at 9:17 am
I’m not trying to be clever — I mean what I presented. Has anyone done the math ( even poorly ) and has any thoughts about it ? Any ’solutions’ I think about are distasteful, although sometimes I think our heroic efforts to save every baby may not be the wisest. Solutions like abort ‘em all, aren’t good, but when you look at the numbers — how could we sustain such a population ?
I don’t know what the answer is. In the natural world disability weeds itself out. We’re far past that now ( on the other hand we’re not, we live on planet, not a mall ) — but we seem to be on a new level of possibility.
We don’t live on a planet of infinite resources and never will. Thinking in terms of ‘the government needs to gives us more money’ is just childish and short sited.
I don’t know what the answer is, but I’ve never heard anyone speak about it either.
April 3rd, 2009 at 2:54 am
Bloop,
I wonder what would happen if, in addition to counting individuals with Down syndrome who would survive and how they would affect our society, we think about the effect of just one Bernie Madoff.
April 2nd, 2009 at 9:11 pm
Bloop,
What exactly are you saying?
April 2nd, 2009 at 2:14 pm
Not saying that children with DS should be hunted down and nuked, but on the flip side has anyone put a thought to what would happen every child with DS made it ?
I found the the number of 5429 cases each year ( and that high 90% abortion number too ) So what would we do with, say over one person with DS life time an increase in the population of 5429 per year.
So Bobby has DS and he’s 5. Say he lives to 70 ( as people with DS live much longer these days )
When he’s 5 the population in the US is 350,000 people with DS.
When he’s 10 that will be 54290 + the survivors of the 350,000 = 404,290
When he’s 20 that will be 542900 + the survivors of the 404290 = 947,190
When he’s 50 that will be 1628700 + the survivors of the 404290 = 2575,890
Of course there is mortality, and I’m sure my figures don’t hold up at all to those who do population statistics, but it does make me wonder. People with with DS are to be loved and respected, but their genetics are no gift, and in any other population of mammels, they wouldn’t be an issue.
I don’t have an answer, but it has to be thought about.
March 16th, 2009 at 3:57 pm
I have 5 daughters. My fourth child was born with Down Syndrome. had some notion before she was born that there was something unusual but I refused all invasive testing because I did not want it to affect my stress level which would negatively impact my daughter. I did however accept the blood test which came back normal and did not indicate Down Syndrome.
I see a few flaws in the line of thinking of this bill. There has been too much energy put into prenatal diagnosis. If a child has leukemia, sickle cell, diabetes or any other of the myriad of illnesses that are possible for a child to develop, no sane person would say “Aw shucks! we should have gotten rid of them at birth!”
No, but every caring, intelligent person would say, “Let’s help this child and put as much energy as possibly into a cure!” I believe Down Syndrome is one of the only things in the medical field that is looked at with this strange mindset.
I don’t mean to insult parents of children with DS by comparing it to illnesses, but trisomy 21 does medically affect children and adults.
What we as a people need to do is begin to care for one another and stop looking at each other as burdens. If we put as much energy into finding treatment for DS as we do for other medical conditions we may soon be closer to an effective treatment for the effects of the 21st chromosome.
Be careful with selective breeding! As the list of acceptable traits grows smaller it becomes easier and easier to fall from the worthy to the worthless.
God’s existence does not depend on our belief in Him
His laws do not depend on our whims and desires
May He keep us always practicing what is pleasing to Him.
March 14th, 2009 at 10:21 am
Richard, I think you’ve said it best and thank you for making the point simply and directly. Of course, there would be moral outrage if a prenatal test was encouraged for parents to tell if their typical child will face health problems so that abortion could be chosen. (At least, I would hope there would be moral outrage.)
As a mother of a child with Down syndrome, I am outraged that it is now becoming morally and socially acceptable for those with a prenatal positive for Down syndrome to be aborted. Eugenics seems to be becoming a morally acceptable practice. Designing a master race seems eerily like something some others wanted not that very long ago.
March 13th, 2009 at 10:15 pm
My child also had 4 surgeries, was told he would never play baseball, and has been hospitalized multiple times, twice in the past year. Now he is has a 3.5 GPA, will graduate from college this May, played baseball for 5 years, and is a black belt in karate.
Yes, he is a typical child, but gosh darn I wish there was a test to tell me how many health issues he would have so I could have chose to save him from all this pain. Sounds pretty ridiculous, doesn’t it?
Down syndrome happens so often did it occur to anyone that maybe it’s supposed to happen? When we chose to have another child we had one who happened to have DS. Big deal.
And, just to be clear; there is a waiting list to adopt children with Down Syndrome.
March 13th, 2009 at 3:22 pm
I contacted Dr. Caplan directly after seeing the video clip via this website. He was unaware that S1810, the Prenatally and Postnatally Diagnosed Conditions Awareness Act (originally called the Kennedy-Brownback bill) was signed into law by President Bush in October ‘08
For anyone not aware of what this bill does — it mandates counseling parents on receipt of a prenatal diagnosis or up to one year after birth with up to date, accurate information on their child’s disability.
Last time I checked it was unfunded, thus not in play yet at all; but hopefully it will be soon. Before we judge parents either way on their own “choice,” let’s get together and contact our Reps in Congress to move on funding this bill. People will still make their “choice” but will soon have information that gives them a sense of the abilities and qualities people with disabilities bring to the world, rather than just a bleak and grossly outdated picture.
I also asked Dr. Caplan to use stronger language to point out that eliminating an entire group of people for any reason is morally and ethically wrong, and will not send our civilization forward in any way.
To say “I’m not sure it’s good” is just not strong enough an assertion of ethics. It is definitely not good and we must support and educate parents when faced with news regarding their precious child.
And by the way, the bill was supported by both sides of the aisle. This is one area “pro-life” and “pro-choice” can agree on.
Editor’s note: You can find more information here:
– Congress approves Kennedy-Brownback disability diagnosis bill
– It’s official: President signs disability diagnosis bill
– Down syndrome advocates lobby on Capitol Hill
March 13th, 2009 at 12:42 pm
I like Caplan’s comment “I’m not sure it’s good.” Let’s talk more about appreciating the diversity that exists around us, rather than trying to eliminate portions of it. I would like to interpret Caplan’s statement as support that all people have relevancy and right to life and that eliminating one type of people is to lose some of the richness and depth of the world around us.
March 13th, 2009 at 12:03 pm
John, I strongly disagree with you. My daughter does not suffer from having Down syndrome, but she has also not had the same health complications your daughter has had. There are families who do and want to adopt children with Down syndrome.
I also agree that counseling is critical when families are given a diagnosis and can have a huge impact on families.
March 13th, 2009 at 8:59 am
The assertion that people with Down Syndrome don’t suffer is ridiculous. My daughter has had four surgeries, spent the better part of her first year in the hospital, and continues to have digestion issues due to her low tone. She wakes up several times during the night screaming from having spit up through her nose because she has persistent and severe reflux.
People have the right to make their own choices and I agree with Caplan that counseling should be mandated because I don’t think people understand what life is like for people with Down Syndrome nor the possibilities that they have. Every one one of them should have to watch a video about Karen Gaffney and then make the choice.
And to Dianne, have you ever stopped to consider that the reason “God” gave them the child was so that they would make the choice to terminate it thus affecting the course of their lives in a different direction? Probably not. And adoption isn’t really a viable alternative. The adoption system is struggling to find placement for the children they already have.
March 12th, 2009 at 1:45 pm
Children with Down Syndrome (DS) deserve to live. Who has the right to commit murder just because the baby is different or going to be more work? People who would abort a baby just because they have a disability are cruel and vain and are more about THEM.
Maybe god gave them this child for a reason. Who are you to decide whether or not this child lives? God goodness sake, at the very least after the birth if you don’t think you can deal with the baby, then have it adopted … but don’t kill it or you are a murderer.