New Stanek poll: Should parents “fix” preborns with Down syndrome if possible?
I have a new poll question up:
Researchers have found a way to “shut off” the extra chromosome leading to Down syndrome. If in the future parents can avert DS, do you think they should?
Our last poll question was:
The fate of at least 3 abortion clinics that are the sole providers in their state hangs in the balance. Will we finally see an abortion-free state in 2013?
A majority of you said yes….
As always, make comments to either the previous or current poll here, not on the Poll Daddy website.
Jul.21, 2013 6:41 pm |
Polls |
Jill Stanek is a nurse turned speaker, columnist and blogger, a national figure in the effort to protect both preborn and postborn innocent human life.
I am eager to see what posters have to say. I am torn, as I find myself very happy to improve quality of life where possible, but I worry that it will actually be damaging to quality of life. I also see the rich and vibrant culture of the disabled as something to be celebrated, not treated as a disease. What would this mean for the disabled as a whole? Not just Downs persons. How would this affect my sister, whose diagnosis is unique to her, but who will never be considered a “fully functional” member of society? How will this affect our opinion of those who cannot accept treatment? How will this affect our opinion of those who refuse treatment? How will this play into the eugenics movement in our world?
I have serious misgivings about this treatment; simultaneously, I wonder if my misgivings are selfish and personal in nature: my desire to have this person who has in some way been disadvantaged to help me to be a better person, to help those who have been advantaged to be better people. Am I just wanting to suppress a group of people, or am I wanting to acknowledge their inherent value?
As I said, I’m really eager to hear what others thing.
If you found out you could keep your child from developing leukemia would you do it? How about diabetes or asthma? Would any parent seriously consider allowing your child to have these things if they could be prevented safely? People with Trisomy 21 have a multitude of health problems and often have a limited life span that included a high risk of early dementia. Why would a parent think this was a good thing to visit on a child?
For disclosure purposes- I am a physician and have dealt with many people with Trisomy 21. I would be glad to offer treatment to this group of patients as I would to any other. There is nothing intrinsically ‘special’ about being disabled. It is a cross to bear and many bear it well. That doesn’t mean we are forbidden to help alleviate that cross. There is plenty of suffering to go around in this world.
I feel about the same way as you, MaryRose. I do understand that Down’s carries a lot of physical problems as well as developmental disabilities though, but I worry about stigma for the disabled people who were born before this treatment, for those who can’t afford it, for those who have religious objections to messing with their children’s genetics…
Plus messing around with genes freaks me out anyway. A little too Gattaca. So when this gets going, what’s stopping people who can afford it from creating a class of humans with “perfect” genetics, and are we going to pretend that there won’t be social inequity towards the “imperfect” that either couldn’t afford the genetic fixes or didn’t get them for some other reason? It just seems really fraught with ethical issues.
YES! God did not create anyone to suffer needlessly. Should we abolish polio vaccine so children can once again suffer and die of that condition???
Jack,
Gattaca keeps playing through my mind, too! “Invalid invalid invalid!” it screams. And I worry about potential negative side effects of tampering with one’s genetic code in any way, not just socially, but physically.
Would expectant parents choose to have a disabled child rather than a ‘normal’ child if the ‘fix’ was safe enough?
You might see a legal-abortion-free state in 2013.
A pro-life bioethicist argues here that it would not be wrong to cure Down syndrome, if it were possible:
http://www.lifesitenews.com/blog/treating-down-syndrome-not-eugenics
But on the other hand, I think many people with Down syndrome would reject such treatment if it were offered (the same way most deaf people would forego corrective surgery). So this does raise many difficult questions.
Like MaryRose and Jack, I’m very torn on this. There’s a lot to work through before I could vote (if I ever can). Can we get a third choice? lol.
Honestly, I would be sad to see this happen.
Down syndrome is not like some other “disabilities” in that it doesn’t leave a person with a missing limb or dooming them to an early death. Sure, people with DS are going to be mentally slower, but it’s not a death sentence.
Like others, I’m torn on this one. My gut instinct is to say no, since anything eugenic disturbs me. But:
1. With all of the physical issues that can be associated with DS, this is about more than just treating a developmental disability. This is potentially preventing these individuals from having heart defects, dementia, etc.
2. This could possibly save lives. Parents who would abort for DS may not if there was a “fix”, as distasteful as that is.
Would we by playing “God” by doing this? I don’t believe in any sort of genetic engineering/manipulation as creating beings and plants is God’s work.
My only doubt here is what Kate mentioned: Would this save lives if non-pro-life parents could genetically alter their Down Syndrome child’s genes instead of having the child killed?
We need a third option: Only making this genetic treatment available to pro-aborts who would otherwise kill their child :-( (maybe?)
My first thought is that by fooling around with turning genes off and on, we may cause problems we didn’t foresee. How do we know that by turning this particular gene off we’re not causing a cascade that points to (say) rapid and early onset dementia later? What does this portend for children of those who have had genes altered? Also, the whole thing smacks of eugenics to me. A polio vaccine (or any vaccine) is not equivalent to altering genes.
Let’s drop the slippery slope arguments. Almost any technology can be used for good or evil. Do not stop it being used for good because it might also be used for evil.
As someone who worked with adults with developmental disabilities for many years, if we could repair any of their disabilities before they are born we should. Down’s Syndrome is not the desire of any parent for their child. It is not the way God made them… it was a genetic accident. If we can repair the results of the genetic accident, we should.
I think so. My brother suffered with cerebral palsy for 50 years because the doctor who delivered on New Years Eve was drunk.
Anything you can do to help people in their suffering you should do.
I’m on both sides of the argument. To help alleviate suffering would be a noble thing to do. But to say “I have a better plan than God” for these children would be arrogant. So I guess my answer is no because God’s ways and thoughts are higher and more perfecting than mine – and he will perfect those who give these children loving care. LL
Define suffering.
My niece with Down Syndrome is not suffering. She is not an accident either. And God DID create her in her mother’s womb. He did not make a mistake.
Maybe we should ask those with DS.
I think that there is a lot of suffering in having mental or physical disabilities, both for the person with them and for the family. That doesn’t mean that life isn’t worth living but I do absolutely see the value in asking the question.
My partner’s older brother has moderate mental disabilities, including but not limited to Tourette’s. He can never live on his own. He gets by on rote memorization alone – he knows exactly what to do in a limited number of situations: how to answer the phone and take a message, how to stock the shelves at work, how to shut the house down for the night if he’s the last to go to bed. But he is at the mercy of the world around him, for the most part.
And the world should have mercy, and for the most part it does. But it is very, very hard. It is very hard for him. He knows he is not like other people, not like his younger brother. Every time a friend of his marries, he retreats to his bedroom and sobs, because he feels so acutely the absence of these things in his own life. We were camping last week and it began to rain and I ran over to his campsite to make sure he remembered to close the zipper on his tent. He didn’t. He was sitting inside of it listening to music, with the rain trickling in right next to him. He was very grateful that I came to remind him but he was also very upset. Upset with himself for not being someone who can think of things like that, and upset with the world in general, for raining into his tent, for raining on his life, for all the rain and all the ways it can ruin things.
Years ago, when he was in his 20s, he got in trouble for following a young woman. He saw her in the mall and thought she was pretty to look at, so he just kept looking at her. Sort of like if he had been channel-surfing and found an interesting program, and just kept watching it. She got nervous and called the police. He learned that it is not okay to look at things or people just because they are nice to look at. To this day he asks me if it’s okay if he looks at something or if it’s not something he can look at.
His mother is in her 70s. His father is dead but his mom just married a wonderful man in his 80s. They can’t keep the big house for too much longer. Soon they will need to move, and soon they might not have room for him, as they transition to the smaller, one-story homes that old people so often require. He is just barely too functional to qualify for housing facilities, but he is nowhere near functional enough to live alone. He speaks excitedly of getting his own place someday, when his mom finally has to sell the house; he speaks of it with the enthusiasm of a kid swearing that when he’s grown up he’ll have dessert for dinner every day. We all know, on some level – even him – that he can’t live alone. But where will he go? Having him come live with us means ripping him away from a support network that has taken him 45 years to build – a boss who knows and cares about him, friends who make sure he has social contact, known routes to known daily needs that took years to ingrain. He qualifies for greater assistance once he reaches a certain age – 55, I think – so everyone is holding their breath until he ages into a senior population, hoping that things hold out until then. I think of him, I think of all the things he wants and all the hopes he has, and I think of how he is essentially just waiting to age up to the next group to stay safe; and it breaks my heart.
I love him dearly and I fully expect to care for him at some point. But I wish, so desperately, for him and for his mother and for his brother and maybe even a little bit for me, that life were different for him.
There is an old saying that I have always really found touching: “God loves you just the way you are, but he loves you too much to let you stay that way.” Obviously that is about sin and not physical or mental condition, but I can’t help thinking of it now anyway. I love him exactly as he is, but if I had the option of changing the hardest things about his life, would I? I don’t think that I could claim to love him if I answered no.
Jack is wise to look at the unintended consequences, but it seems to me any opportunity to cure a malfunctioning of the human body should be taken. I do believe genetic manipulation would be often highly unethical, but in this case, you are just deleting an obvious birth defect and allowing the child’s body to operate as intended before the chromosomal error. Messing with a child’s chromosomes to adjust their abilities according to some adult’s conception of how the child must be is immoral.
If this is undertaken one day, it should be with great caution. Other posters have mentioned the possibility of unknown side-effects, and that is the part that worries me most. From the little bits I’ve read about the research, it seems what they can do is “turn off” an entire chromosome in a developing person’s DNA code. Not remove or destroy it. So do they know for sure that the “treatment” is permanent? Can they be sure the selected copy of the 21st chromosome does not also hold some other important gene? Is there a chance of any other sort of future health issues from this, or the chance of passing on the altered genes to future generations?
Potential ethical issues abound here, and lots more work is needed before it is implemented or flatly declared a good thing to do to people. Just my $0.02
For Down’s? Probably not. Unlike many other genetic disorders, Down’s starts affecting the child during the earliest stages of fetal development, and affects every part of the development. As such, Drs. would have to turn off the extra chromosome in every cell in the body as early as possible in the fetal development. The earlier this is done, the more likely the procedure would induce abortions. While there is nothing intrisically wrong about fixing a genetic disorder, for right now, I think the problems here outweigh the benefits.
Still thinking about this one. Not sure. It could take generations to find out if there are long term consequences physically, emotionally, mentally, socially, reproductively, etc.
I’m not sure people who voted “No” to this have thought through the issue carefully.Who wouldn’t want to be born with two ears to hear, two eyes to see, a nose to smell, a tongue to taste and hands to feel? What about blood that clots normally, eyes that can see all the visible colours, a brain that’s able to control the muscles in the body.DS is a defect – it’s an abnormality which, in an ideal world, wouldn’t be there. If it were possible to treat, of course it should be treated. How is it any different to spina bifida? That being said, all children are precious gifts, including those with DS. You wouldn’t kill a baby with colour blindness – nor should you kill a baby with DS.
Why do people say it is “God’s will” for kids to have DS but not cancer? It is so pick and choose. This is God’s will but that isn’t.
how bout…God gave us science and if we use it ethically He can and does bless it? Maybe it is God’s will for someone to have DS and then be cured of it.
As a parent if I knew I could SAFELY switch off trisomy 21 for my child I would do it. But I would never kill any of my children no matter their disability. Still, isn’t it a bit sanctimonious for us to say it is God’s will for others to have to live with DS when WE’RE not the ones who have to live with it? I agree with the person who said we really need to ask those with DS.
When a child is born with cleft pallet, do we leave them that way and say God’s will, or do we do surgery? Same with heart defects. We have found spina bifita can be treated by surgery better before birth than after, and no one questions when we do it. If we can develop a safe way to correct downs syndrome, why is this any different?
Yes, downs syndrome children are special, but all children are special. Would we deny a child an education to preserve their culture as it is if they came from a non-literate society? Would we deny medical care for diseases that develop after birth and cite “it’s God’s will?”
We live in a fallen world. It is full of evils, both manmade and natural. I know of no passage in the Bible that says not to heal those who need healing. Jesus healed. The apostles healed. Luke was called the beloved physician.
It is called Down Syndrome. Not Downs Syndrome.
They are children with Down Syndrome. Not Down Syndrome children.
Cleft palate in varying degrees interferes with a child’s ability to eat and breathe.
Surgery can correct it. True. Children in other countries may not have that luxury and there are some that live with it and struggle to survive.
Spina Bifida involves exposed parts of the spine and affects a child’s nerves and motor control like the ability to walk. Surgery in utero and after birth has indeed improved the health of those born with spina bifida.
Children with Down Syndrome can be born with heart defects that require immediate surgery. Usually within days. My niece had open heart surgery at 3 days old. She doesn’t need any more “healing.” I am not against lifesaving heart surgery for those with DS that need it. It saves their lives!
NOTHING happens outside the will of God. His ways are not my ways.
I do not see Down Syndrome as a disease or a death sentence.
And again I think those that are affected by it should be asked this question as well as those that love them.
What would parents that have children with Down Syndrome say?
It almost sounds like those that voted NO are being painted as heartless in some ways when of course there is no way of knowing what the side effects would be to
“fix” DS.
And yes it all smacks of eugenics.
I think someone already mentioned up the thread aways that some in the deaf community would refuse implants. They can make that call whether they want to hear or not.
The deaf community is really an interesting connection. Because they value their community, their culture, and often choose to forego having a CI. People with Down Syndrome are typically quite social, but are also often quite proud of who they are and what they have accomplished.
On a related note, who here has read Flowers for Algernon?
Abnormal =/= defective. Are we so baffled by anyone who sees the world differently? Are we such slaves to our intellects? I’m not sure how I would feel about this “fix”, but I do know how I feel about many of the posts.
“Treating” Down Syndrome would not be as simple as treating Spina Bifida. You must recognize what you are taking away from the individual you are “treating.” You must develop an understanding of the value of this abnormality-not just of the person as a living human, but of this facet of who that person is. It is that which gives me pause more than anything. The way that we blow off the beauty of those with Down Syndrome for the more ‘valuable’ quality of conformity. I’m not sure whether or not this treatment would be a boon to those with Down Syndrome and I think it is possible that we would be wrong to do it.
For the record, I have not voted. This is a very cautious subject deserving of much attention and prayer.
I vote No. I’m a simple person with limited understanding, but something about this idea feels deeply wrong.
I’ve read it, MaryRose. Excellent book. Very sad though.
I am a parent of a child with Down’s syndrome. He has no health problems, aside from a small hearing loss. I have no problems with curing his hearing, or his heart, if he had a defect. But my son has something else. I can’t describe it other than, in him, I see a clearer picture of God. This is not because he is “very loving”, as DS children are often described. But there is something about his innocence, his guilessness, that “ordinary” people lack, that I lack. To our detriment. Perhaps I’m a loony, but lets look at what Satan thinks of these children. 90% who are detected in utero are murdered. Why? Because they will have or not have heart problems? Because they MAY have hearing loss etc etc. ? Why is there a specific test for this one condition? What does the devil know, that we can’t see? Even the false compassion of those who would be against abortion because DS people are “cute” or “loving”. My son is like my other children, and like himself. But he has this other thing, not cuteness, or “lovingness” or whatever Down’s cliches are trotted out. But something else. Oh, how I wish I had this thing my son has.