Heck yes, I’d cure my hypothetical Down Syndrome child.
As far as the Asperger scenario – assuming that I have that condition instead of simply fitting much of the profile – I’d have been glad to have that condition treated early on even if it meant I wouldn’t be the same person I am today.
As far as the cosmetic scenario question – I’d go with the useful fallback position – ‘when you can pay for it, you have it done’.

Helen Rittelmeyer had a thought-provoking article in “Doublethink” on just this subject, titled “Toward a Bioethics of Love,” concerning her severely disabled sister. Definitely worth a read in this discussion: http://americasfuture.org/doublethink/2009/05/toward-a-bioethics-of-love/

The deaf community has been wrestling with this for more than a decade, after it was discovered cochlear implants can increase hearing. The deaf view themselves as a community–with their own language and culture–and some say that getting an implant would mean you are longer part of that culture.

I would certainly “cure” my child if my child had Down Syndrome and such a cure were possible.
And I think that doing so is the objectively moral thing to do. In other words, in the abstract to refuse to do so would be “wrong.”
But I also think that the people – especially the people personally close to the disabled – who object to this are on to some very important and correct moral insights that run counter to society’s reigning ethos. I still think they are wrong, but there are truths buried in what they are saying – important truths about
1) The inherent dignity of each living human being
2) The fact that our life experiences, including our experiences as embodied souls with all of the limitations (some big, some little) that that implies, shape our peronalities in very important ways
3) The fact that society’s capacity to extend trust and respect and love to people is tragically limited by its understanding of what is within the range of “normal” human variation
Again, I’d cure my kid in a heartbeat and I think that any parent who would not is doing wrong by their kid (even if their own flawed moral reasoning makes them not culpable for the wrong). But the other side of this debate should listened to. because for all the days from this day to the day that a hypothetical ‘cure” is possible, it is in their moral reasoning that the way of truth can be found.

To the hypothetical parent struggling with the topical dilemma, I’d ask a simple question (allowing for any amount of hindsight the parent wishes to use in answering): Would you love your cured DS child less?
I submit that we fail to examine the moving and sometimes faded line between loving the disabled person and loving the person for the sake of the disability. Activists advocating for people with disabilities are sometimes good examples of that failure.
Our culture has spoken, btw. The Americans with Disabilities Act has been around for quite some time. It is both a result of the activism and a symptom of the misplaced love. Consider, please, why such a federal law was deemed necessary. It meant that too many people either didn’t care about or were hostile towards disabled people. The law is defined in terms of the disability, but its result is to punish that lack of care or hostility. I don’t mean to run it down — on balance I agree with its necessity — but I do mean to include it in the examination of this topic.

While I can understand where these folks are coming from, they seem deeply misguided — to deny treatment to someone because their disability makes you feel warm and fuzzy is frankly deplorable. I have no doubt that the sons of the woman quoted truly are wonderful and remarkable, that they are possessed of the same intrinsic worth as anyone else. But I am disturbed by the implication that these boys are so wonderful /because/ of their Downs Syndrome. That to cure them of a condition any honest person can see is a disability would be to diminish them in some fashion.
Is it perhaps because we see people with Downs and other developmental conditions as “innocent”, and we are thus loathe to do anything that might “rob them” of that innocence? is it a fear that if we take away the impairment, these sweet and precious people will become as mean and unpleasant as the rest of us?
As to your hypothetical about “correcting” homosexuality in utero? I have to wonder — if my parents could have done it 26 years ago, do I wish they had? Certainly, much of my life would have been easier, simpler, if I were straight. I’d probably be married by now, maybe have a kid or two. I’d be accepted rather than tolerated by my family. Truthfully, I’d be a completely different person. Awareness of my orientation has shaped so much of my life, going back to childhood, I can’t really imagine who I’d be if that weren’t the case. I don’t know. I don’t believe that being gay is something “wrong” with me that needs to be fixed. I don’t believe that I am inferior to straight people or that I am somehow incomplete. Then again, I don’t believe people with Downs Syndrome are inferior or incomplete either. I suppose the difference is that the ways in which being gay disadvantages me are a result of the choices other people make in how they treat me, as opposed to limits or disadvantages that the “condition” itself creates.
I need to think on this one some more.

Because of the monumental tasks involved this should be an individual decision. The idea the state can force people to bear disabled children they do not want to or are incapable of raising is horrifying and unlikely to yield good results.
This is particularly true a society that is disinterested in providing the moral, financial & educational support all but the most exceptional families will require to raise, educate and care for these children.
I do not care what other people do or do not do, I only care what the state is going to force me to do.

I think there are those living with Down syndrome who would object to your equating it with deafness and blindness. I have a friend whose daughter has Down syndrome, and while she has an extra chromosome, she also has few actual traits that one could identify as disabling. Her daughter has small foot braces to help her walk, glasses and tubes in her ears. She also has a normal IQ and no identified learning disabilities. So I think when people say that curing Down syndrome is messing with who people are, they are not necessarily saying that the disability is intrinsic to identity (though, obviously from the examples you give, some people do say that). Rather, they are saying that a diagnosis of Down syndrome is one trait that people have, and it is necessarily disabling. The painful limitations, rather, come from societal expectations and judgment of those who do not meet them. (I do not have personal experience with Down syndrome, though I and one of my children have another genetic disease…so I am paraphrasing what my friend has told me, and then emailing this link to her. Perhaps she will come comment as well and correct me if I have gotten any of this wrong!).

My youngest son is hearing impaired (deaf in one ear, only partial hearing in the other), and though hearing impairment is a factor in his life, it doesn’t define him (though he does enjoy the extra sympathy he gets from some teenage girls when they notice his hearing aid).
Early on my wife and I decided to do whatever it takes to make sure he always had the best hearing aid money can buy, whatever speech therapy he needed, and whatever in-school support he needed in order to compete with hearing kids.
I’ve talked with him about how some in the deaf community look at cochlear implants as an assault on their community; he thought it was “weird.” Why wouldn’t they want to hear if they could, he asked. Indeed.
If, at some point in the future, he chooses to toss his hearing aid in the trash and decides to resent my wife and I for insisting he wear it at least at school when he was growing up, then so bit it. I will be more than happy to put up with the heat.

I don’t really see the Downs part of the question a very hard one. Parents know they will not be around forever and that there is a good chance/hope they will die before their children.
Is it responsible parenting to leave your children in need of constant support by people you do not know and can’t monitor once you’re gone? Is it responsible parenting to deprive your child of the capacity to truly fend for themselves when the tools to do so are available? I don’t think so.

Quick reaction to the post:
It seems that the moral choice should not rest with anyone but the person with the disability.
You list a number of people, all adults, who have decided that they do not want to be fixed. It is their moral right to chose that.
I think it should be the same with Downs people. I think they are capable of understanding quite a bit especially if it were explained to them on their level. I think that it would not be and should not be ultimately the parents choice at all. At most the parent should really only decide to ask that question of their child. If the child shows that they are capable of understanding it, if its presented to them fairly both pro and con, the choice to be “fixed” should be theirs. You would probably see that the choices would be mixed, some might want to be like everyone else. Some might not. It would be their right to decide that.

As the mother of a son with Asperger’s, I have asked myself this very question many times. It definitely is not as simple as it seems. My son’s unique personality is completely bound up within his Asperger’s. It would be abundantly obvious to say that this is one of his most trying features.
But what is less obvious is that this is also one of his most endearing features.
His complete obliviousness to social expectations is only blockheadedness in certain situations. In others, it is sweet and refreshing beyond words. He is preserved from that common deceit that we all unconsciously practice in the name of smoothing social interactions. This characteristic is one that I am not always 100% sure he needs to lose.
Why? It seems obvious he would get along better–and thus, be happier–and so would all of those who deal with him. But I’m not sure I’m convinced of that.
It’s hard to explain, but the same mechanism that preserves him from social awareness also preserves a sort of moral purity. His failure to understand social rights and wrongs actually preserves him from acting in a way which is morally wrong. Does that make sense?
Let me try it another way: as Christians, we believe that if a person sins, but does so without knowledge or understanding that he is sinning, then he is faultless. This is my son.
So while I grieve his lack of ability to behave as we expect him to, I am comforted by this knowledge that he is being preserved from the stain we all know in our everyday lives. It’s an odd sort of comfort, but it’s such that it would be odd to suddenly have that removed, and see him behaving normally (according to social mores) but no longer oblivious to the consequences…
So though I don’t have any experience with Downs, I would imagine feeling the same way. I have been told that the innocence of these people is similar, if not more intense and pure. I have also heard that they are even more loving than most people. (And this I often find in my son, too–he just doesn’t always express it the way you expect him to.)
That’s my 2 cents.

I have a 5 year-old daughter with Down Syndrome. I understand the sentiments expressed in the article but simply disagree with the claim that in these children identity and personality are linked to “that extra chromosome.” If there were a medical treatment that could, say, help my daughter learn something in 10 repetitions rather than 100, I could not morally deny her it. I’ve heard no convincing argument that this would change her identity or her charmingly innocent personality. Included in my love for my daughter is helping her grow and develop as much as possible as a human being.

My sister Lorraine will not celebrate her 56th birthday next week even though birthdays have always been her favorite days. She has Down syndrome and I am her guardian. She had a good life, all things consider until sometime around the year 2000 when, as happens to many adults with Down syndrome, she began to exhibit signs of Alzheimer’s disease. Since then her life has been sheer torment for her and for those who love her. How could anyone, presented with the chance to not only provide their child with the fullest potential possible but to also protect that child from enduring the long, painful death of early onset Alzheimer’s choose anything else?
When Lorraine was young and vital, full of fun and love and laughter, I believed differently. I believed that her life had meaning on so many levels that Downs was a blessing. I know her existence made me a better person. Now I ask, at what cost to her?

Just to clarify a little on what I said above.
We all agree that having Downs is not the worst thing that can happen to a person and that there is an inherant dignity in all people and that those with Downs have something of value to offer our world.
So giving a Down’s child (I say child because they remain childlike and under the care of their parents but I am imagining a person who has reached some point of consent) the choice would not be like allowing a kid to choose to play in the street or something. A child who chose not to be “fixed” would stay the fine people they already were. The child who decided that they wanted to change would also probably be a fine person. This is why I think these folks could be entrusted with the choice.

Fulness of life is fulness of life; as wonderful as people are despite their limitations to us and regardless of how we may feel about our limits, call them disabilities if you want, we all are, we can and should strive for the best possible existence for not only ourselves now but for the future of humanity.

When my (not 5yo) daughter with Down Syndrome was born, a friend of ours, a wise monk (now abbot) sent us an email saying, “Be assured that this is the child God has chosen for your family… She will teach you much about love.”
And it’s true. I think people with Down Syndrome are here for a purpose, that includes teaching the rest of us about the value and dignity of every human life. They teach us how to love both in the sense that we must make extra sacrifices to care for them, but also by the example of their affection for others.
(Just this morning as I was leaving for work my daughter reminded me to “give Mama a kiss and hug!”)
Nonethless, I have a duty as a father to help her develop as a human being as much as possible, and if there were a way to help improve her learning and memory, thus helping her become more self-sufficient, I would not hesitate to do so.

I am comforted by this knowledge that he is being preserved from the stain we all know in our everyday lives.
How comforted are you going to be when he can’t hold a job, find an apartment or find someone to be his friend or marry him. This is less of a problem with higher functioning individuals but these are still issues.

I have a son who has a mild case of Asperger’s. Even a mild case, though, is a serious burden on him, and on our entire family. He’s a very smart boy, but he struggles mightily with school because he can’t seem to focus on anything other than what he wants to focus on (which he learns with the amazing thoroughness that characterizes the Aspie approach to things). You wouldn’t think a child as intelligent as our son would be a special needs kid, but he definitely is. My sense is that people who meet us and who don’t know the struggles we’re going through with him think he’s a bright, sensitive child — which he is — but that that’s the entire story. What they don’t see is how his Asperger’s related anxiety torments him, and how unreachable he can be, despite our constant efforts to accomodate his condition. His siblings are bearing the brunt of his condition, because he is terribly intolerant of them, and even cruel. His inability to empathize with them is causing all kinds of suffering there. They feel rejected and despised by him, and they can’t understand that he’s got this thing that keeps him from understanding what his behavior means.
The bottom line with us is that while we absolutely love our son and have sacrificed willingly to make his life such that he can thrive, this Asperger’s is a bad thing. If genetic intervention could take this burden away from him (and by extension all of us in the family), I would consent without hesitation. Last year his anxiety grew so intense that his physician prescribed an SSRI inhibitor, which, while no panacea, helped him measurably. It seemed to me that he became more himself while on the drug, because he had been defined so much by his anxiety, and his reaction to it. With at least some of that in retreat, thanks to the drug, the sweet, friendly part of him was able to emerge. He didn’t seem as internally besieged as he had been. If you believe that a disability is an integral part of a person’s personality and core identity, then you would say that he was less of who he really is because of the intervention of the drug. I disagree strongly. My child is in pain, and because he is in pain, he makes others in our family suffer. We believe that we are called to suffer with him, but if he had a broken leg, I wouldn’t say, “God made you that way, your identity is bound up with your broken leg, so let’s all just accept this and do the best we can.” If there were no intervention that could heal his broken leg, obviously we’d have to live with it. But if there is help — curative help — it’s not right to refuse it.

Imagine if you opted not to “cure” your in utero child from deafness or blindness or Down’s. Can you imagine justifying that decision to the child as he or she grew up? “Yes, honey, I could have given you hearing. But I decided against it, lest social prejudice be reinforced.” Let’s not lose sight of who bears the real burden here: the child. The parent’s life will be affected, massively so, but it is the child who will be deaf, or blind, or Down’s afflicted, or disabled, or just plain different. It is the child who will have to bear the burden of social scorn, of inconvenience, and of existential suffering every day that he or she is alive.
What kind of parent would be able to stand before their child and defend themselves? What kind of parent would be able to say, “I could have given you sight. But I let you become blind.”

Coincidentally, two very important studies published in the past month demonstrate that Down Syndrome and Alzheimers have the same cause – “Alzheimer’s disease could be considered a late onset form of Down syndrome”. It turns out that those with Alzheimers have some cells with Trisomy 21 (an extra copy of chromosome 21) leading to an accumulation of the ‘bad’ amyloid protein that degrades cell function. This can also cause atherosclerosis, cardiovascular disease, strokes, and possibly diabetes.
Thus a cure for Down Syndrome could also be a cure for Alzheimer’s, and vice-versa.

I’m not a Christian anymore, but it seems to me that the Gospel stories are very instructive here if one is to approach this as a Christian. Jesus didn’t respond to the blind man or the leper by affirming their inherent dignity and telling them they were fine just the way they were. He didn’t tell them their afflictions were God’s way of teaching their relatives lessons in kindness and love. He healed them. He granted sight to the blind, a voice to the mute, health to the sick. Clearly, these were /good things to do/. Such good things, in fact, that Jesus seemed hesitant to share these miracles with non-Jews — the Roman centurion had to demonstrate his faith before his servant was healed.
If such healing is within human capacity, and if humans are to be Christ-like, how can it be withheld?

This conversation might be helped by a little Down Syndrome 101. I was introduced to facts about Down syndrome four years ago, after the birth of our daughter. It was then that I learned that Down syndrome is not a disease. It’s a genetic condition which means that she has an extra 23rd chromosome in every cell of her body. An extra chromosome leads to extra protein expressed in every cell of her body. That extra protein often brings with it physical characteristics–an extra fold of skin around the eye, a distinctive line across the palm of the hand, smaller stature, etc. It also brings with it low muscle tone, which usually leads to a delay in motor development. And it generally brings what the medical community calls “mild mental retardation” which means an IQ between 60 and 80. Incidentally, that extra chromosome also seems to protect against solid cancerous tumors. And many people say it seems to bring with it the “sweetness” and “innocence” some of the people in this conversation have already mentioned.
Factually speaking, Down syndrome is not a disease. And therefore it cannot be cured.
The recent research is on mice with a similar genetic composition, and it is research that demonstrates an increase in the cognitive capabilities of the mice. “Cure” or not, the question remains: If you could improve the cognitive ability of your child with Down syndrome, would you?
There are three factors that make this question more complicated than it appears. One, the question really is: If you could use drugs to improve the cognitive ability of your child with Down syndrome, would you? In other words, what are the risks? Are there side effects to the drug therapy involved? Would there be a loss in any other area of my child’s well-being, socially, physically, in terms of personality?
Two–the cognitive ability, as measured by IQ, of people with Down syndrome, has increased significantly throughout the course of the past century without any drug therapy. According to medical textbooks, it has gone from an average of 30, to 50, to 70. That increase can be explained by two factors. One, increased medical intervention to repair heart defects, offer hearing aids early on, etc. Two, increased social awareness and support for families and children with Down syndrome. If I’m going to give money, time, or energy toward improving my daughter’s cognitive ability, it’s going to be by improving those types of medical interventions and social interventions rather than through a drug.
Three, and finally, the question arises, Why? I agree with what some other people have mentioned here that parents have an obligation to help provide their children health and wholeness, to the degree that it is possible. Does a higher IQ lead to health and wholeness? For me, the way I try to answer this question is based upon the idea that things that separate us from one another—from God, from friendships, from family—are not good. Things that bring us together are. That’s just a general rule, but I use it as a litmus test for decisions about when and how we will offer treatment to Penny. So, for instance, we have followed her hearing closely because she always shows a “mild hearing loss,” and if that hearing loss increased and she couldn’t understand what other people were saying to her, it would separate her from them and I would want to intervene if possible. Does a higher IQ separate or bring together? I’m not sure the answer to that question is particularly clear.
In conclusion, in talking about Down syndrome, get the facts straight. This is a genetic condition, not a disease. The “cure” is talking only about cognitive ability. And be aware that the answer to questions about cognitive ability is not nearly as clear as it might seem. We’re talking about people here—physical, social, intellectual, emotional, and spiritual individuals. Tinkering with any part of them is tinkering with the whole, and must be considered with humility, wisdom, and great care.

I would cure a kid with Down syndrome in a heartbeat, as I would someone with Asperger’s, autism, deafness, blindness, or biopolar depression. Those are ailments that are not normal and that diminish the child’s quality of life and ability to make choices. And, frankly, I would also be in favor of gene therapy to make a baby who is more likely to become homosexual more likely to be heterosexual instead. I think sexual orientation is more complex than that. All the studies I’ve seen indicate that it’s probably a combination of multiple genes interacting with the environment, which might well include exposure to higher levels of testosterone in the mother’s womb. I am in favor of gay rights, including the right to marry and adopt children. I think it’s a normal human variant. It’s also a variant that is likely to cause a great deal of trouble in the world, given human attitudes towards homosexuality and, if you are religious, it can make it hard to follow the tenets of the faith that forbid being sexually active if you’re gay. If there’s a way to make a child not have to deal with that and that would not hurt him in any way, I’d be in favor of it. I don’t think it would be morally appropriate to do gene therapy on anyone other than a baby. An older child or adult should be able to make that decision for himself. I’d guess some might be in favor of it.

I was about to make a comment regarding a different perspective on the issue, but Keith beat me to it.
In our secular society, there is a fair amount of obliviousness to the idea that things happen for a reason which none of us understands. At best, the concept of “God’s will” is utterly forgotten; at worst, the very idea is denigrated as no better than willful stupidity.
It undoubtedly would be much more expedient for everyone involved if no one were ever born with a disability.
It would also be much more expedient if nothing bad ever happened to anybody, ever.
But life is not like that. It’s not like that for a reason. What a bunch of moral retards we would be if we never had to deal with a single problem! The fact is that dealing with problems is what makes us grow spiritually. Accepting bad things and making the best of them is perhaps the single most important thing we do every day. It is the underpinning of nearly every religion.
Like it or not, suffering is good for us…except when we’re too blockheaded to let it.
Now, it is also true that Jesus healed a lot of people, and this is definitely a good thing. But his healing of people tells us more about life and goodness than just that: in each case, the suffering of those who endured these illnesses or disabilities was the fertile ground in which their faith grew to be great enough to allow Jesus to heal them. And Jesus explicitly says that it was their faith that has healed them.
To those who see only evil in all disabilities, it seems obtuse to refuse to accept healing.
To those who see an element of God’s will in those same disabilities, it seems to be a decision we’re not entitled to make, without unforeseen consequences.
That doesn’t mean we need to refuse every instance of giving assistance to those with disabilities. In this light, there is a difference–even if it only seems cosmetic–between giving a child a hearing aid, and actually changing their DNA. If we can afford to give a child a hearing aid, we ought to do so. But to change a person’s DNA is big stuff, and carries a totally different moral weight as a result.
So now I try to apply this to my son’s situation. Why does he have Asperger’s? What has it done for all those who have come into contact with him? I could write a whole essay on that subject. But what makes him what he is? Is it the way God created him? Is it possible that it’s just a matter of heavy metal poisoning? If so, and removing the poison will restore him to what he was created to be, then is that not the right thing to do? Surely yes.
But if it is not merely a poisoning, which can be lifted–if it’s not merely a matter of restoring something that is merely latent–if this is really the way he was created–then who am I to decide he should have been created differently?
Based on my comments before, it would be easy to make judgements of me like Mont D Law has, thinking that I would use some “warm, fuzzy excuse” to avoid doing the best I can for my son. The truth is very, very far from this. I have gone to the mat for my son so far as to alienate even my own family. We never go to restaurants, and we can’t even think about eating any food that has the slightest trace of starch in it, because by doing so, we have been able to help him be as close to normal as possible. Most people would swear he wasn’t Aspergers. This is due to the amount of work we have done with him. We have spared no effort or expense.
So there really is no single answer to the question, but there are an awful lot of considerations that go far, far beyond mere expediency.

Two objections to the question:
1) It is not so much a genuine intellectual exercise as a complicated way of saying, “Please express your revulsion at Down Syndrome,” which accomplishes nothing for people with that condition.
2) It evades the actual question of “What are we prepared to do to mitigate the difficulties Down Syndrome causes?” (What are we prepared to do for parents, for schools, etc.) The question is sort of like asking, “Forget all that stuff about wheelchair ramps — if you could get your legs back, would you want them?”

A few of my family members work with autistic children. They all think I have Asperger’s, and though I’ve never been formally diagnosed, I think they are right. I wouldn’t choose a cure because I do feel that would change all aspects of my personality. However, there are certain issues I wish were mitigated, such as an overanxious personality. But I know plenty of non-autistic people with the same problem.
I did read and respond to the NYT post above; it really isn’t about a “cure” for Down syndrome, but rather the possibility of helping people with DS become healthier and more independent. They would still have DS but would be higher-functioning. Viewed in that light, it’s hard to see that as a bad thing.

First of all, it’s “a child with Down syndrome” NOT “a child with Down” or “a child with Down’s.” It’s interesting that people who don’t have child with Down syndrome (or any other disability) are the first to offer an opinion what they would do. If you had a child with Down syndrome, the decision would not be cut and dry.
I would not “cure” my son as he does not have a disease. he has a condition. His condition does not affect his ability to add value to the human experience; just the contrary. His condition adds to humanity. He is a constant reminder of what we should aspire to be, loving without judgment; compassionate without regard to race, religion, politics, etc. My son participates in karate, swimming, horseback riding, the visual and performance arts; he goes to school, is reading, has friends, rides his bike — oh, and did I mention he just turned 5? Sounds like every other 5 year old to me.
I agree with @Laura. It’s not about a cure. If there is a way to help those who struggle with cognitive development live healthier, more independent lives, that’s great. But to frame it as a “cure” continues to suggest that our kids have some kind of communicable disease.

Wow. This is one of the better threads in ages. The argument seems to be to either make everyone fall in the statistical normal range, or should we love them just the way they are. No, we can’t cure DS Alkali, it’s just a though experiment. Let’s look at it from the other side- Suppose using this same imaginary technology, you make your kid better? Instead of being Tiger Woods Sr and putting your kid in training from the time he could stand, just give Mrs an in utero injection and you get Tiger Woods, Sammy Sosa, or say Bill Gates? Who would not, especially when not to do so would doom your child to the lowest level of the socioeconomic totem pole?

I do not know what the answer to this issue is. But I do think it is a sort of litmus test for what we consider to be valuable about people.
I volunteer for an organiztion called The ARC. It was previously called the Association for Retarded Citizens. The name was changed because people with downs syndrome and other forms of mental retardation petitioned the organiztion to change the name. The term “retard” is very painful to them due to insults from kids etc. So they wanted the organization that serves them to eliminate that hated word from its title. The fact that they could engage in the process to get this name changed says a lot about how wrong the stereotype of incompetence among people with mild to moderate mental retardation is.
People with downs want the same things the rest of us want – jobs, apartments, cars, girl/boy friends, even marriage. They are perfectly capable of expressing their preferences and opinions. Yes it does take a lot of hard work on the part of parents and various groups that support the person to achieve this independence. But I have met few adults with downs who are miserable unhappy people.
The Arc I volunteer for has a member who won a swimming gold medal in international special olympics. He has become a local hero and I volunteered to drive him to speak at a gathering of people with downs syndrome. He works at a local law firm as the copy person and lives in an apartment he shares with two other young men with support staff who come in to help with medical appointments, job problems and help them manage their money. He had taken cooking classes at the local adult ed program and was telling me all about what a great beef stew he makes. He was not at all nervous about giving a speech – after all he had met the President. During the drive he told me all about his rigorous training program and how girls fall all over him since he won the medal (a situation he had no problems with). We even had a discussion about politics and his thoughts on Iraq. Nothing about this young man suggested to me he needed fixing and in every way he appeared to live a purposeful and fulfilling life.
Most people don’t know other people with downs so they are unaware of the progress that has been made or what people with downs are like. I think this ignorance informs some of the discussion we are having now. I also think that we need to seriously think about just how perfect people need to be in order to avoid being “fixed”. Genetic manipulation has an enormous potential to radically alter our species. Some of that seems really great to me but I do have concerns about where we go with this. What is an acceptable IQ for our society? It seems we start aborting fetus with IQ’s in the mild to moderate range. Some will abort on the basis of gender. So we already know something about how we will use genetic therapies – what we don’t know is how far we will manipulate those genes. If 70 is too low an IQ for us – what about 90? What about short people or brown eyed people or people who are genetically predisposed towards being overweight? Are we striving towards some kind of socially derived definition of human physical perfection? These seem like really important issues to consider.
I would not dismiss the heartbreak that parents of people with downs syndrome experience nor the hard work they do to support the development of their children. But I bet some of that heartbreak is a function of social attitudes and expectations. I think that perhaps it is not people with downs syndrome who have a problem that needs fixing- but a society that defines only “perfect” people as valuable and has difficulties tolerating anything outside a narrow range of human characteristics.

Amy Julia Becker & Mother of a child w/ Down syndrome,
Putting aside intellectual capability, Down Syndrome can also affect digestion, hearing, vision, the thyroid, cardiovascular health and other deficiencies that inevitably lead to shorter life spans with more medical problems. For example: Children with Down syndrome are at a much higher risk for congenital heart disease. As a comparison: the incidence of congenital heart disease in the general population is 0.8%. The incidence of congenital heart disease in children with Down syndrome is between 40%-60%.
And as I posted earlier, it appears that the heart problems a directly related to amyloid protein production caused by the extra chromosome. Thus “curing” Down Syndrome would lead to a longer, healthier life – and how could you deny a child that?

I take care of a lot of older Down’s patients, old enough that their parents have died. Most of the time, it is not especially pretty. They are deserted by the rest of the family. (Yes, yes. I am sure no one on this board would do that.) Some caretaker who knows next to nothing about the person shows up to sign papers. Every now and then I get one who does come with extended family. It is wonderful as I get a much better history and it is possible to take care of them without holding them down or using an IM dose of something, usually Ketamine. Of course, there is a whole spectrum to DS. Those whose families push/let them, if they are able, to become independent are pretty neat people and patients.
I see a regular group of young Down’s kids also. They have a certain kind of innocence about them which can be compelling. Mothers in particular, some fathers also, are clearly captivated by this innocence. Heck, I understand this because I like kids better than adults. However, as parents we are supposed to raise our kids, not keep them young forever. If there were a hypothetical cure, I think a parents obligation to their child would mean using it.
“But life is not like that. It’s not like that for a reason. What a bunch of moral retards we would be if we never had to deal with a single problem! ”
How should we deal with your appendicitis? Suffering does not make our spirits grow, but rather our response to it.
My son is also an Aspie. There is no scientific evidence that heavy metals cause Asperger’s. It sounds like your child is responding to your attention. Good luck. If you have not, you should really read Tyler Cowen’s latest book, Create Your Own Economy. A very good look at how Aspie traits are a positive in our world and how they fit in.
Steve

I’d like to respond to raciocination’s comment that life is full of suffering “for a reason,” that reason having to do with God’s will. Many Christians say things like “Everything happens for a reason,” and “God chose this child for your family,” and “God does not give us more than we can handle.” I don’t agree. Bad things happen for a reason, and the reason is that we are fallen people in a fallen world. The idea that the suffering of disease and disability are direct gifts from God that we somehow just don’t recognize is, at best, an attempt to give comfort and, at worst, a distortion of who God is.
I have a disabling genetic bone disorder, as does one of my children, and it gives me no comfort to believe that God gave me this disease. In fact, it is much more comforting for me to believe that my disease is the chance result of living in an imperfect world, rather than the design of a God who somehow thinks it’s OK to create children with bones so fragile that they break their legs walking across the living room floor, because it will make them and their parents better people, or teach others something about acceptance and love.
With God nothing is impossible, and God is able to bring good out of the worst situations. My disease has shaped me in many ways, both good and bad, and it is certainly an integral part of my identity. That does not make it God’s will. That does not mean that God grants suffering so it can be a vehicle of goodness. It is possible to learn a great deal from being, loving or interacting with a person who is disabled or sick, without believing that the sickness or disability is God’s will.
While the reason for suffering, and the question of where God is in our suffering, are certainly topics for disagreement among Christians, there are plenty of Christians who refuse to see suffering as God’s intent. The best recent example of this is an essay by theologian David Bentley Hart, written in 2004 after the Asian tsunami, which First Things ran again a few weeks ago after the Haitian earthquake.
I have often said that, if I were given the choice to start my life over again, or my daughter’s life over again, without our bone disorder, I would take it. But of course I don’t have that choice. Which is kind of a relief, because I also know that I cannot begin to understand all the ways that my having this disease has been a blessing for us and others.
If I were offered a cure for my disease, I would accept it gratefully. But, as Amy Julia pointed out above, the idea that Down syndrome is a “disease” is not entirely accurate, and the “cure” being discussed is really a potential treatment to improve cognitive function.

R Hampton – but congenital heart defects can be cured without genetic manipulation – kids with Downs who have heart defects get surgery. Is the reason some abrt a fetus with downs cause of the potential for a heart defect or is it because they have lower IQ’s? The so called cure is not addressing the heart defects – it is addressing the intellectual functioning. This is what I find troubling – people with IQ’s in the mild to moderate range are not incapable of reasonable levels of independent living. So why are 90% aborted? It just seems we have making real clear judgements that people need to have a “normal” IQ in order to be okay for us. That seems the larger issue to me – just how smart do you have to be in our society?
I’d be inclioned to say if I had a child with downs who could have that extra chromosone eliminated through some sort of procedure that affected the gene I would probably do it. But what about kids whose intellectual shortcomings are not genetic? When we clearly say that mild to moderate intellectual limitations are not acceptable what happens to those kids who do have mild to moderate MR that is not due to downs?
I think we sometyimes tend to look at a very specific issue and ignore the larger consequences. Maybe we should do everything we can to find a cure for downs but meanwhile maybe we should also consider all the other by products that would come along with that cure.

“But if it is not merely a poisoning, which can be lifted–if it’s not merely a matter of restoring something that is merely latent–if this is really the way he was created–then who am I to decide he should have been created differently?”
This strikes me as the worst cop out of them all. The “Two boats and a helicopter” joke comes to mind here. Our technology and it’s ability to overcome life’s hardships is as much a gift as life itself.
If we were meant to stay the way we were created, we’d be babies our whole life through. But we aren’t; we grow, learn, change. None of those things is an affront to God in any way. Perhaps the “intended purpose” of such children is to motivate us to find a cure and to develop the understanding of biology and physiology that is required to get there. It’s just as presumptuous to assume that God must want us to allow people to live with curable disabilities just because they were born that way as it is to assume that we must cure every aberration from the norm. All that can solidly be said is that we should strive for wisdom in how we decide to apply the resources available to us.
I’d fall on the side of working to correct those things that generate strong impediments to self sufficiency while leaving those that just serve as personal variations and behavioral differences alone.

Would you cure your kid’s Down syndrome? I would cure her cold and cure her flu but I would not change who she is. I think those in society who do not accept her for who she is are the ones who need to be cured.

Cecelia,
I was specifically addressing the “curing” of children with Down Syndrome – that is, those who were not aborted. And the affects of Down Syndrome on the body go beyond a surgeon’s ability to repair, including but not limited to: impaired immune responses and the incidence of autoimmunity, premature aging, hypogonadism, cataracts, hearing loss, age-related increase in hypothyroidism, seizures, neoplasms, degenerative vascular disease, loss of adaptive abilities, and increased risk of senile dementia of Alzheimer type. “The extra chromosome 21 affects almost every organ system and results in a wide spectrum of phenotypic consequences”

Cecelia,
Karl G captures what to me is a consistently coherent Conservative philosophy: correct those things that generate strong impediments to self sufficiency while leaving those that just serve as personal variations and behavioral differences alone. Like other policy positions on socialism, public welfare, taxation, etc. the goal of (American) Conservatism is to have every individual to be free of government support. So to answer you question, the threshold for “normal” intelligence would not determined by numbers, but by the ability to be self-sufficient and/or the ability of the community to voluntarily support those who can’t be self-sufficient.
I for one think Conservatism is too radical in its disdain for social programs, but at least I understand the reasoning.

Down syndrome is caused by an extra chromosome that causes multiple disabilities including mental disabilities and physical problems and pretty much guarantee that people affected by it will never be able to live without some type of supervision or hold more than a menial job. As long as there is no way to change those facts of life, of course it’s appropriate to insure that they have the best schooling, best medical treatment, and services that will let them live independently, work at as good a job as they can, and have opportunities to socialize. But withholding a treatment, if it were ever to exist, that would boost IQ and improve their chances of getting better jobs and having more understanding of the world would be completely inappropriate. Saying so in no way implies that people with Down Syndrome or other mental or physical handicaps should not have the very best services available, but saying they shouldn’t have access to whatever treatments that would cure or vastly improve those conditions is wrong-headed. As is often said, the person is not the disability. A person with Down Syndrome who had gene therapy that got rid of the extra chromosome would be a person with increased opportunities.

A few thoughts:
In general, I’d say that correcting any physical defect if it were possible (and since this is hypothetical, we’re not taking into account crushing expense of the treatement, side effects, etc.) is a no-brainer. I’d tend also to say the same of clearly genetic diseases such as Down Syndrome, Tay-Sachs disease, sickle-cell anemia, cystic fibrosis, etc. While I understand some of the complexities and issues, I wouldn’t see the correction of such conditions by gene therapy in utero, assuming such correction could be reliably and safely done, as a problem.
I realize that these assumptions lend the whole thing a sci-fi air, but then again cochlear implants were sci-fi just a few years ago. I think the issue is the morality of the situation. Understanding that, for example, Down Syndrome is not a disease in the usual sense, and that it’s systemic, and that there will probably be no magic “cure” in the immediate term, the fact remains that such correction, perhaps in some of our lifetimes, is not inconceivable. Thus, I think Rod is right to spur us to consider the ethics–we don’t want to wait until we can do this and discuss the issues then.
Psychological disorders are tricker. Many, in fact, are not even well-defined, let alone understood; and as Rod pointed out a few posts back, there’s some evidence that “disorders” are bound to cultural contexts. Thus, in this area one would have to tread with great caution. The diametrically opposite posts by Aspy families here indicates that. In fact, I have a good friend who’s been diagnosed with Asperger’s Syndrome. If he were “cured” I think he’d be happier in many ways; but he’s not miserable, either. Of course, he’s an adult who could decide for himself.
In any case, spectrum-type disorders are notoriously tricky. If you’re “low-functioning” and can hardly interact, that’s one thing; but what if you’re David Byrne or Tim Burton (both Aspys)? Some other conditions too–no one would want a child to be bipolar, but there’s some (admittedly ambiguous) evidence that bipolars are significantly liklier to be highly creative. Where do you draw the line? Where does it leave off being an issue of one’s personality, one’s self and become an issue of illness?
In fact, it’s not unlike the question of A Clockwork Orange. Is the Ludovico Process moral? Not to compare the Alex character to a person with disabilities, of course, but the principle, taken to its logical extreme, is the same. It’s like how an old friend of mine and I used to argue about the old Doc Savage novels, in which Doc regularly does “corrective” brain surgery on captured felons to make them forget their criminal past and become upstanding citizens. I always argued that I’d rather die, even as a malefactor, than be forcibly changed into someone I’m not. He argued that if the person in question was truly incorrigible and unreformable by any other method, then it’s more humane to do as Doc did, since the person is not killed or kept in jail for life, but can take his place in society, albeit with alterations. I still hold to my view on that, but still, there are dobutless gray boundaries, as we’ve seen here. Truly a puzzlement.

Incidentally, Elizabeth Moon wrote an excellent “science fiction” novel dealing with this very issue, The Speed of Dark. It’s one of my favorites. The main character, Lou Arrendale, is an autistic savant who is been given the opportunity to “cure” his condition. Even if you are not a fan of Sci-Fi, I strongly recommend the novel based on the author’s ability to describe Lou’s experience of the world.

Two concepts here, one minor, one major:
Minor–there is a minority here who seem to think nothing of God using another human being to teach us a lesson. I don’t think so–but there’s no other way to interpret words like “t’s not like that for a reason. What a bunch of moral retards we would be if we never had to deal with a single problem!”. So differently abled people are now problems we get handed to stop us from being moral retards [sic]. Have these people not thought this through?
Major–many of the other arguments seem to be dancing around the idea that personal identity is some fixed substance that inheres in us somehow. It’s not merely that we “grow, adapt, and change”–how we behave, how we think, how we feel, are all an interaction between our bodies and our environments. The fetal environment first affects our genotype as it begins to express itself. Beyond that, all kinds of events completely exterior to us can make permanent changes in our brain chemistry. To focus on changing genotypes is to give a false privilege to the genotype independently of everything that has happened to it. Our personal identity (at least parts of it) is not given to us at our creation; it evolves continuously throughout our lives. And the same events can have a different reaction in different people, depending on their genotypically-driven neurochemical balances. If I seek a therapist, am I not trying to mitigate how my body reacts to trauma? How is this different than wondering if I should do something about my sexual orientation, or my obsessive-compulsive disorders, or my XXXXX syndrome?

If it will make their lives happier, if it will actually make them function better as human beings, then the answer is an unequivocal yes and any moral issues involved be damned along with those who would use them to stop it.

Down’s syndrome is a disease. If I was born with a withered hand, I would not say, having a withered hand is part of who I am. I would say, cure it please. If I were born with stunted internal organs that limited my diet, I would not say, this diet is part of who I am, don’t you dare cure me and improve my metabolism. If there were a cure for ALS, or cystic fibrosis, or any number of other inherited illnesses… actually, aren’t we spending money seeking such cures all the time? If there were a cure for Down’s syndrome, then the dispute about whether to abort a fetus that will grow into a child with Down’s syndrome becomes moot, because the condition can be cured. It is the fact that it is right in the genes that makes it an open question whether to carry the pregnancy to term.
Coping with a disability, living life in spite of a disability, loving someone who has a disability are all admirable. IDENTIFYING a person WITH their disability is absurd. I will agree with the top post though — as long as a person is able to be self-sufficient, nobody else should be legally authorized to mandate a “cure” for some vaguely diagnosed psychological condition that is merely weird. Down’s syndrome is a diagnosable, physically identifiable, objective condition, not a touchy-feely speculation about how people should think.

I have a son with Asperger’s and I would cure him in an instant. His condition has isolated our family and damaged his relationships with his siblings, causing psychological damage to his brother. If he had been my husband and not my son I would have had to divorce him for the sake of the children. Maybe other families would have coped and compensated better, used his Asperger’s to build connections instead of retreating; we didn’t.
He’s easier to live with now – he’s a principled, insightful young man and his self-control and empathy are growing. Selfless in the big untried things, selfish in the daily small ones. Wrestles with the deep questions. But the teen years were bad and the damage has been done. Would he change? Some things – the difficulties in recognizing and reading people, the ways he offends without intending to, most of the things that isolate him. Other things no, not his stubborness nor his focus nor his judgementalism nor his germophobia.
Without the Asperger’s he might be one of the happy world-grasping hedonist golden boys I see so many of in this town, and my mother’s heart would still love him.

My children don’t have Downs Syndrome- they have Fetal Alcohol Syndrome and Reactive Attachment Disorder. If there were a cure for either condition, we would do it in a heartbeat. I would make any financial sacrifice I could and I would hold their hands through painful treatments or try to mitigate nasty side effects. Their IQs fall into the same range as many people with Downs- 60 -70s. That is just enough to know that you are different, to know that you are missing things socially but not enough to be able to change it. My children are not happy people. Their brain damage precludes them from hope of healing from the attachment disorder. The combination virtually guarantees them a place in one of our jails, probably as a repeat visitor. While not incarcerated they are likely to be homeless. One is already a sexual predator. I would cure them not only for their sakes but for the rest of the society they live in. A pill that could grant my kids 20 or 30 IQ points would be worth its weight in gold to me.

No-one’s touched the homosexuality theme yet (that I saw), so I’ll take it as bait for myself.
I’ll start by saying that I have absolutely no clue why I am the way I am. Research suggests that there is an element of genetics to sexuality, but it’s not a simple matter of a “gay gene.” More likely a predisposition that may or may not be activated by environmental factors.
Assuming such gene therapy existed, should parents take advantage and remove the predisposition? I’m probably going to surprise some people here by saying that I really don’t know.
First of all, let me say that as I approach my 40th birthday, being gay is something that I’ve grown to appreciate. And I think my life has gotten better with each passing year.
I don’t really know the stresses that your teens and twenties put on straight boys and men, so it’s hard to have a reference point, but I do know that it was very difficult for me to grow into my own skin. Maybe that’s true of everybody, but I know I did have the added difficulty to paddling upstream against the expectations of the society.
A lot of my troubles come out of a particular time and place. When I was struggling with my sexuality at age 17 and 18, I distinctly remember knowing, at the very core of my being, that being gay meant I would not live to see my 30th birthday. I completely absorbed the societal wisdom that “GAY=Got AIDS Yet?” That’s an artifact from the late ’80s.
Because I do really enjoy the company of children, I thought for a time I could “straighten” myself out for the sake of having a family. Fortunately, I never took that step (in all my years, I have dated exactly one woman, and that was immediately prior to coming out of the closet to my friends. She cried when I told her, and I’m still sorry to have led her along, even to the small extent that I did, and to have hurt her, but I’m glad I broke it off while she had an opportunity to find someone else).
And even after that, the struggle didn’t really end. I will say that one major factor in enlisting in the Army was to prove to myself that I was man enough to do it. And while the Army was a wonderful experience that taught me many, many things (including an appreciation, believe it or not, for much of what the South has to offer), living under DADT and especially being discharged without possibility of reenlistment after 9/11 really messed with my head in ways I’m still working out. For one thing, it’s still hard for me to have a meaningful romantic relationship, even ten years after getting out.
Now, you may well say that much of the difficulties I’ve faced are not caused by my being gay, but because of society’s reaction to that fact. And that is to a large extent true.
But children are not born into the world that we would like them to live in; they are born into the world as it is. And while this world is unquestionably better for gay men than it was 20 years ago when I was first navigating the question of my sexuality, it’s still not an easy life by any means, even with the support of family, friends and co-workers.
Unquestionably, all of this has ultimately made me a stronger man today. But that has come at the expense of quite a bit of sorrow, perhaps sorrow I might have been spared had life been different. It’s made me more of a fighter than I might otherwise have been. You can judge for yourself whether that’s good or bad on balance; I do know that it’s very hard for me to see both sides of political issues that bear directly on homosexuality, and I think that’s a weakness.
Considering all of the advantages my parents and family gave me, I might have done so much more had I been straight. The road’s been harder and longer than it might otherwise have been, but then again I’ve also got a bit more empathy for the underdogs in society this way (Go Saints!)
In short, I’ve reached a point where I like who I am, but it was a hard road getting here, one that a parent might well think twice about sparing their child if they were given the choice.

The semantics argument deserves some attention.
Down Syndrome is a condition. It can be treated, its effects alleviated or arrested, but short of the technology (i.e. Star Trek) to change a person’s genetic structure at the cellular level, it will not be cured.
We can, and I believe we must, tolerate less-than-perfect term usages. Calling it a disease permits further discussion that can be valuable. Getting stuck on the term (as opposed to clarifying the facts, as I’ve attempted here) serves nothing and no one.

I think the discussion sidesteps a fundamental philosophical question. We all know that aberrations from the “norm” are typical and ordinary. At that point people begin to ask questions about whether that aberration is “good” or “bad.” Then one has to ask questions about whether anyone even has a framework for making that choice. I have a daughter with Down syndrome; I myself probably have a form of Bipolar along with my son. All three of us have risks and rewards that are associated with what is a truly genetic aberration. Those risks and rewards involve life or death issues for all three of us. These are not merely social consequences, but increased risks for Alzheimers, suicide, employability, etc.
The only adequate frame of reference I have been able to gather from scripture is the following: “Was this the way Adam/Eve was created?” The answer in our cases is a resounding NO, but by extension, none of us are as Adam and Eve were created. Once you have that question firmly established as your standard, then the answers about what to do become much more logical. If this is not how Adam/Eve were before the fall, then what I see as an aberration is a result of that fall. Christ died to redeem us, and by extension all creation, from the fall and its effects and he uses us as His agents (us) to work with Him to work out that redemption. Ultimately that work won’t be completed in this era, but that does not exempt us from the attempt, under His direction.
Even though my daughter Katie draws the utmost compassion and humility out of others and can be sweet and giving, she can also be selfish and stubborn. She requires healing to choose to be sweet for unselfish reasons and to be stubborn regarding righteousness. Her aberration also opens up understanding of the function of the genetic material that is aberrant and provides clues not only to her healing but to the healing of others. For instance, she is almost guaranteed to have Alzheimer’s but also almost guaranteed not to get a hard tumor cancer. Those two facts have been used to help create strategies for addressing both of those diseases.
It is easy to see the redemption that God provides in response to our brokenness as good, because it is–often better than if nothing had happened to mar. Still, that does not make the damage any less bad or something that we could “blame” on God, unless He decides to take the blame Himself, which he occasionally does.
The world is a complicated place, with complicated results for every action. That does not exempt us from doing good.

Anglican Peggy said:
“I am comforted by this knowledge that he is being preserved from the stain we all know in our everyday lives.”
I suppose that depends on what your definition of that “stain” is…
I don’t think kids with Aspy are exempted from desiring self-will over God’s will, and most of them, even the most socially delayed still understand the concept of wanting what I want when I want it. If original sin consists of intentionally choosing self over submission, I can’t see that they are all that exempt.

It appears to me that most of the parents who would not provide a “cure” for their child because it would change who they are have not experienced what their child is going through.
I have suffered through over 20 years of cyclical, seasonal depression and anxiety. The experience has definitely affected me and made me the person that I am today. Some of that has been very positive and has made me a stronger, more sensitive, patient, spiritual and empathetic person. It has shaped my personality and I would definitely be a different person today otherwise.
Now I see my 21 year old daughter beginning with some of the same symptoms that have affected me. Would I cure her to prevent this even though it would change who she is? In a heartbeat. I would give anything in the world, including my life, to have her not have to deal with the struggles that I have.

“the horrifying finding that 90 percent of all fetuses diagnosed with Down are aborted”
That percentage does sound disturbing on its face, but I think it is hiding an important caveat: fetuses don’t all get this testing. If you’re a woman who would not abort your child, disability or no, you are less likely to pay for the test (and perhaps receive the diagnosis) in the first place. On the other hand, women who are willing to abort based on the test’s findings are more likely to choose to get tested.

Any statistical approach must cover some important facts, such as:
RELATIONSHIP OF DOWN SYNDROME INCIDENCE TO MOTHERS’ AGE
Mother’s Age Incidence of Down Syndrome
Under 30 Less than 1 in 1,000
30 1 in 900
35 1 in 400
36 1 in 300
37 1 in 230
38 1 in 180
39 1 in 135
40 1 in 105
42 1 in 60
44 1 in 35
46 1 in 20
48 1 in 16
49 1 in 12
Source: Hook, E.G., Lindsjo, A. Down Syndrome in Live Births by Single Year Maternal Age.
And…
Researchers have extensively studied the defects in chromosome 21 that cause Down syndrome. In 88% of cases, the extra copy of chromosome 21 is derived from the mother. In 8% of the cases, the father provided the extra copy of chromosome 21. In the remaining 2% of the cases, Down syndrome is due to mitotic errors, an error in cell division which occurs after fertilization when the sperm and ovum are joined.
… so, a new “moral” question is begged: If the parents know that they have the requisite genetic risk for Down syndrome children, should they not consider the choice of just not having children? And speaking of the maternal age factor:
However, of the total population, older mothers have fewer babies; about 75% of babies with Down syndrome are born to younger women because more younger women than older women have babies. Only about nine percent of total pregnancies occur in women 35 years or older each year, but about 25% of babies with Down syndrome are born to women in this age group… But using maternal age alone will not detect over 75% of pregnancies that will result in Down syndrome.

Thanks for that important point Heather B. I was surprised by the 90% statistic, not only because of the implications, but because it didn’t seem to jibe with my experience of families and moms I know. I didn’t immediately think about the function of the word “diagnosed”. I think you are right. I was not tested in any of my 3 pregnancies because I wouldn’t have aborted. I’m moderately pro-choice, and I know quite a few other pro-choice women who also refused testing because since Down’s was not a reason for termination in their eyes, why bother? The statistic makes more sense to me now; I should have caught that, but I didn’t!

Even with a 49-year-old mother, there’s an 11 out of 12 chance that she will not have a child with Down syndrome. One of my grandmothers relatives had a baby when she was in her 50s who was perfectly normal, so much so that she didn’t have the energy to keep up with him and he was raised by one of his older sisters.
I’d probably look at it that way if I were an older mom and take into account that there are things that can be done for kids born with Down’s. Better to give life than to abort.

Andrea, I don’t mean to be argumentative, but the sentiment you express is intellectually dangerous while it may serve to be beneficial emotionally. While some insist that a glass being little bit empty means that it’s mostly full miss the fact that when it happens to the individual (in this case the DS fetus, but it goes to traffic statistics as well as other such things), for that individual it’s 100%.
The road to hell has guard rails created by people who blithely depend on statistics.

I’ve said this on Gerard Nadal’s site and I’ll say it again: Thank God that 90% of fetuses with Down’s syndrome are aborted. Thank God we can test for it well before a complete baby is ready for birth. Because then it is too late. Why would anyone be so cruel as to deliberately inflict Down’s syndrome on their baby? If you could carefully select the egg and the sperm before conception, to be sure they were good healthy cells which would NOT give your baby Down’s syndrome, almost anyone would do so. Unfortunately, we don’t have the technology yet. What is so different about the zygote? Oh no, that is NOT the zygote I want to grow my baby from.
The testimony of people who have had to cope with congenital diseases is eloquent and compelling. So is the case of the woman with a mild case of Down’s syndrome who, before marriage, chose to have her tubes tied, being unwilling to pass that gene on to another generation. There are millions of possible combinations, which would all be unique, which never get a chance to express themselves, because most eggs don’t meet a sperm, and most sperm don’t get to be the one that penetrates the egg. Biology is a numbers game.
Why won’t I also endorse infanticide? Simple. Once the genetic pattern has done its mindless biological thing to produce a self-aware organism, with neuronic pathways, which is aware of and sensitive to what is happening to it, its a baby. We can’t destroy it. We can only make the best of what random biological processes have given it, love it, raise it, help it cope. But before that point, removing diseased tissue is a cure.
By the way, Down’s syndrome is a condition, but it is also a disease. The root of the word is dis – ease. Something about the body is not as it should be. Disease is not limited to conditions caused by infectious agents. Lou Gehrig’s disease (ALS) is also genetic. It is also a disease. So is cystic fibrosis.

I found this article rambling and bit offensive. I am not sure though but apologise anyway.
I would seek to weigh up the costs and benefits for my child of any course of action. Even though it would be difficult to know what these were, his or her (or ‘it’s’ if transgendered) interests would come first. If they were or became ‘disabled’, I would seek to optimise their development and perhaps encourage this to become an asset.
Its really good that those who have some form of disability can identify and understand that their ‘disability’ is in fact an asset. It is only society that disables individuals. However, there are limits…Some visually impaired groups are lobbying for pathways/sidewalks where people would have to walk in the same direction. This dispenses with the necessity for open pathway walking where people would need to make eye contact to avoid each other. This would not be good for overall community cohesion and the need to develop a duty of care/responsibility for others.
We all have to grow up and accept our lot but recognise reciprocity….

“Karl G captures what to me is a consistently coherent Conservative philosophy: correct those things that generate strong impediments to self sufficiency while leaving those that just serve as personal variations and behavioral differences alone. Like other policy positions on socialism, public welfare, taxation, etc. the goal of (American) Conservatism is to have every individual to be free of government support.”
I have to point out how amusing this statement is, given that I’m about as progressive as they come. I suppose the essential difference is that I see many systemic impediments to said self sufficiency that are essentially insurmountable (the rare exception that breaks free doesn’t count any more than winning lottery does). If anything, our social programs are too weak; they don’t go nearly far enough to separate profit from labor and the basic struggle to survive- a fundamental prerequisite for a proper free market that Adam Smith himself laid out.
We’ve come closer to breaking the poverty cycle in the past century than at any other point in history, but still fall short. And in large part it comes from an unwillingness to fully commit ourselves to eliminating the handicaps that lie at its root- be they inherent medical or mental conditions, inherited poverty, or prevailing social biases.