What are we losing if Down syndrome disappears?

In a previous post, I reported on an account that suggests Down syndrome may already be starting to disappear from our society. But, if that is the case, what are we losing if Down syndrome disappears?Copenhagen Post Downs Syndrome Dwindling July 20 2011

As covered in the earlier post, the number of babies born with Down syndrome is already dwindling in Western European countries. Figure 1 shows some graphs from the EUROCAT database. It shows the disparity between the number of babies born with Down syndrome as compared to the number of Down syndrome pregnancies there are.

Fig. 1: EUROCAT Graphs

Fig. 1: EUROCAT Graphs

Figure 2 is a portion of the table included in the international study which found that 86% of all pregnancies carrying a child with Down syndrome in France are terminated and 87% are terminated in Switzerland.

Fig. 2: Table of Down syndrome incidence (abridged)

Fig. 2: Table of Down syndrome incidence (abridged)

There are many who will look at those figures and say, “Good! The public prenatal testing program is working!” As reported by the Copenhagen Post in the summer of 2011, due to the country’s prenatal testing program, Denmark “could be a country without a single citizen with Down’s syndrome in the not too distant future.”  And, here in the United States, researchers have written about the purpose of California’s prenatal screening program:

Kazerouni California prenatal testing program purpose

Therefore, the dwindling in the number of births, to many, means that prenatal testing programs are fulfilling their purpose.

This crass view of eliminating from the world one of the multitudes of genetic variations that make up the human condition confounds me when compared to how the disappearance of other groups of individuals with distinctive characteristics are considered.

Just last week, the Guardian ran an article on a “lost” report surfacing after 40 years. The report was on the genocide perpetrated against the natives of the Amazon by Brazil’s military dictatorship. Reading the news account is heartbreaking:

  • “People were traded like animals”
  • “[O]fficers made children beat their parents, brothers whip their siblings and forced women back to work immediately after giving birth.”
  • 30 Cinta Larga Indians were attacked with dynamite dropped from airplanes, with only two survivors to tell the story

These native tribes now exist in isolated clusters in the jungle.

Of course, that report can spark outrage because of the physical violence perpetrated against the native tribes. But, then there is the report of whole tribes possibly being wiped off the face of the earth through a natural disaster.

In 2004, a tsunami ravaged the south Pacific. This event was the subject of “Impossible,” a movie released at the start 2013. In the tsunami’s aftermath, the Times of India ran a headline: “Tsunami May Have Rendered Threatened Tribes Extinct.” Specifically, these were the Onge, Jarawa, Great Andamanese, Sintinelese, and Shompens tribes, all numbering less than 800 individuals total.

Commenting on the tribes’s possible extinction, Armand Marie Leroi in the New York Times wondered why their survival should be of such concern when a total of 150,000 lives were lost from the tsunami? Leroi relays how the Times of India noted that these tribes were “remnants of the oldest human populations of Asia and Australia,” and represented “Negrito racial stocks,” with the Shompens (interestingly) being the last of “Mongoloid stock.” Leroi then examines the possibly offensive view of such things as “racial stocks,” but turns the concern on its head:

There is a final reason race matters. It gives us reason – if there were not reason enough already – to value and protect some of the world’s most obscure and marginalized people.

Leroi describes how the racial characteristics of these tribes have permeated throughout the south Pacific through the mixture of different people with them. And, though members of the tribes seemed to have survived the Tsunami, they remain so small that eventually they will die out. Leroi laments, “a human race will have gone extinct, and the human species will be the poorer for it.”

In this era of multiculturalism, biodiversity, and interconnectedness, the loss of a kind of people seems intuitively to be tragic: a narrowing of the diversity of the human condition does not seem to be something to be aimed for, but something to be regretted.

Yet, just the opposite is occurring with Down syndrome.

There are active efforts being taken to reduce the number of lives born with Down syndrome with an utter lack of reflection. Policy-makers and leaders of professional medical organizations craft their public prenatal testing policies and practice guidelines to encourage its offering, uptake, and reduction of individuals with Down syndrome, without accounting for what might be lost should Down syndrome disappear.

I hope you will share your thoughts on what may be lost should Down syndrome disappear. But, I think at a certain level it strikes me as the height of hubris to believe there may not be something lost if a part of the human condition that has been with us for time immemorial were to be eliminated. As Leroi concludes, “the human species will be poorer for it.”

Update: A related post on this subject, “The case for conserving disability.”

Comments

  1. Thanks, Mark. This is timely. Just last night I jotted down “a world without Down syndrome” while making notes for ideas to update a presentation I’m doing soon on Down syndrome, prenatal testing, and abortion. I’m not sure words could express the incalculable cost of eradicating babies with Down syndrome.

    • I would simply like to pose a couple questions to those who gave birth to a DS child. If you knew before you even concieved that you had an increased risk of having a DS child would you take the risk and continue your endeavor to have a biological child for “yourself”? If hypothetically there were a cure for DS would you offer it to your child? Loving a child unconditionally is a requirment for any parent. This does not always fit so systematically into what every parent wants for their child, which I hope would be nothing but the best.

      • We did know we had an increased chance when we decided to have another child after our daughter was born with Down syndrome. Many other families make the same decision, just as many other parents who happen to have a sibling with Down syndrome. Your hypothetical about a cure may not be so hypothetical in the future and in that instance, such a decision should be made the same as is being made to decide to have a child and whether to have prenatal testing: by the parents as individuals without any overt or societal coercion. Your final statement suggests that having Down syndrome is not the “best.” If you have not had an invested relationship with an individual with Down syndrome (meaning one that is not just superficial or happenstance), then seeking one out may inform your judgment of what life is the “best.”

        • Well said. Seek out individuals who force you to question your preconceived (no pun intended) ideas. Until we had the blessing of a down syndrome grandchild we had no idea how much richer our lives have become.

          Everyone is different from the other. Some are more different physically, some are more different intellectually, and some are more different socially. But it is the variance of the human condition that creates the rich tapestry of humanity. To pull out one thread because it makes others uncomfortable is to mar the entire piece.

      • If you knew before you even concieved that you had an increased risk of having a DS child would you take the risk and continue your endeavor to have a biological child for “yourself”?

        I have no idea what I would have done then. We did go on to have a second child who does not have Down syndrome fully aware that there was an increased change of that child having Down syndrome. (And we did have a prenatal diagnosis with my child with DS.)

        If hypothetically there were a cure for DS would you offer it to your child?

        Down syndrome is part of my child in every cell of her being. I cannot imagine “curing” it without changing who she is in some fundamental way. Hypothetically, if there was a reversing of Down syndrome, I’d let her decide for herself as an adult.

        So many things happen in life and our kids (neurotypical or not) are often NOT what we imagine. Personality, life circumstance, surprise disability, surprise talent, and so many more aspects of life change our expectations.

  2. I think the main threat is to the survivors of the programme. As with any type of genocidal programme that targets a group of people for eradication, it is the impact on those survivors that distinguishes that act from other acts of killing. What we are seeing here is a programme that targets the Down syndrome community for birth prevention with the inevitable effects of reinforcing stigmatization and discrimination against that group because society has determined that their lives are off less worth than others.

    Sure, we can rightly say that “society” misses out if Down syndrome disappears, but it is not about us, it’s about them.

  3. God forbid if a mother would like to have a child with a normal life. Please. Let people make their own decisions.

    • Where not talking about cycles on a washing machine.

    • To imply that a person with Down syndrome doesn’t have a “normal” life shows exactly how ignorant you are. Educate yourself before you speak.

      • Michael Moody says:

        Thank you Mel.

      • Melanie Merritt says:

        Yes, exactly! What a meat head!

      • I used to think like you … and then I actually met and interacted with some people with DS (rather than staring at them with disgust, from across the shopping mall). I volunteered alongside these individuals as they worked for 2-4 hours, serving the homeless at an inner city Food Bank. These people were loved and adored! They were gentle and kind-hearted, and greeted our patrons (many of whom were mentally ill, filthy, or highly intoxicated) with open acceptance; I do not think they were even capable of judging another human-being for superficial things. They were simple and child-like in many ways … but they also had unique and impressive abilities. One of them loved to sing … he had a lovely voice and joy simply bubbled from every pore as he shared his gift. Another had an incredible knowledge of politics … he was pretty much silent until someone began to speak about political topics, and then suddenly he was sharing non-stop info as though he had memorized every single news report he had ever heard or read! I will always cherish my experience with those people … it was life-changing … and in just that one setting, they have wonderfully impacted many hundreds of people! I am so thankful that their parents chose not to end their lives, as they have made this world a brighter place!

    • valueall says:

      It’s about people with DS-not families. Love to all those with DS. Kia kaha!!

    • Jared bennett says:

      Define what you call a Normal Life Jeff? Is a normal life being a part of the family? Is a normal life having a conversation with your friends? Is normal having fun with your family? Is normal showing emotions and caring for your family and friends?

    • Jeff, a study of individuals with Down syndrome found that 99% answered that they were happy with their lives. I agree with you: that is not a normal life, as I doubt the population without Down syndrome would rate their lives that high. That said, I hope that you will contact your local Down syndrome support organization and offer to volunteer, even if it is for just one event. There has never been a better time to have a life with Down syndrome, with individuals living longer, fuller, and more included lives than ever before. As with all views that suggest some people are less worth than others, once you get to know that “other” person, you find out they’re a real person, not an abstract group of medical or racist or ethnic stereotypes. Spend some time with those whose lives you seek to judge, and I think you’ll have a more informed position.

      • valueall says:

        I don;t know what you mean by “normal life”? Its a normal life for people with DS and that’s all that counts-who cares what “normal” people think.

    • The issue is that some mothers/parents are not being supported to make their own decision on this – there is pressure being exerted from a number of different directions (health, social and others) but few speaking on behalf of the unborn’s right to life, regardless of perceived ‘disabilities’.

    • Lets make our kids precision tuned robots, so we’ll never have to see amazing kids that are taught to rise up no matter what they are going through: https://www.youtube.com/watch?v=y6He0FWoFj0

  4. @Jeff, this article is not about making a choice for one’s self. This is about the “ERADICATION” of a complete “human” group because of a chromosomal abnormality. What the HELL is wrong with you? “God forbid if a mother would like to have a child with a normal life.” That is the problem with society today, comments just like that. Among others I’ve come across, DS children should be locked in cages, etc.

    The child and the parent have no decision in the matter of this chromosomal abnormality and it is not something that is hereditary either. This comes from a cross in the DNA when the sperm and the egg meat and the exact moment of fertilization and a chromosome is tripled.

    @ Mike S… this is not all of society determining their lives being of less worth, this is only from a small, feckless portion that likes to point fingers at everyone other than the hypocrites in the mirror.

    My wife and I have a child with Down Syndrome and wouldn’t give him up for the world. These prenatal tests are crap, all of the tests done showed nothing abnormal, so it was a surprise when our little man was born. While our boy was in the NICU from being born in my truck on the way to the hospital, another couple came in that had all the indications that their child would have Downs and, nope, perfectly typical child. The child did however have to have a surgery on it’s heart, but came through with flying colors and they stayed till it recovered and went home. Mean while we were told by the soulless, feckless, dr., that informed my wife that our son had Down Syndrome told her he wouldn’t amount to anything. What a wonderful piece of fecal matter she is! He is thriving and happy as can be, we are involved in a great support group Low Country Down Syndrome Society. Our life is just as normal as any other family’s life and we provide for our son the very best that he can get, without asking for a dime form people like Jeff and others.

    • Grace Wathen says:

      Will the doctor who told your wife that your son would not amount to anything deserves to be struck off. My brother is a retired Consultant Psychiatrist who spent a lot of time years ago getting Down Syndrome of Institutions and back to their families and if their families would not have them they were adopted. He is now over 80 years old and has had a severe stroke so will not read what you wrote and I am glad he is unable to read it as he would be really hurt and annoyed. These children can lead good and meaningful lives. Like you and your wife my son and his wife had no idea that there first child would be born with Down Syndrome. He is a cheerful child and I would not be without him. D S people give unconditional love and I feel so privileged to have that love from him. I call him my Treasure as that is what he is.

    • Hi Will, I was sort of generalising about “society”. The statistics that Mark has linked to would indicate that it is a reasonable generalisation though, particularly in those countries where there are national screening programmes and the majority of births are being prevented.

      Don’t let Jeff spoil a good day. People who seek normality or perfection fall over themselves sooner or later.

    • valueall says:

      haha-go Will!!! Agree entirely!

    • Victoria says:

      It’s not eradication you fucking idiot. would you say the same for donkeys? You speak as if to saying aborting a bunch of ds babies is going to forever extinct them. It’s a birth defect not a race or a people. The world is unfortunatly never going to run out of what causes ds. It’s not even about a “normal life” it’s about the never ending health issues. It’s about over population, spent resources, etc. it’s absurd to know for a fact that your child has ds and not to terminate. Incredible selfish and just dumb.

      • Well you sound well educated, good to see the system is working! 🙁

      • StelLa McLeod says:

        Victoria, Not every child with Down syndrome has “never ending health issues”. In fact most people I know with Down syndrome are reasonably healthy, even if some of them had heart operations as babies. There are plenty of people without Down syndrome who use up more of the world’s resources. People with Down syndrome are not “birth defects”; they are people. I think it a far greater defect to be lacking in empathy.

      • I know I shouldn’t reply to you Victoria, because its obvious by your use of language that my son with Down Syndrome would run rings around you both with his IQ and his empathy and compassion. But here is the thing, if we do not fight this battle, what will be next, My daughter with complex heart conditions(who has a NORMAL IQ and a is a Honor student at school, my friends baby with a club foot who has brought my love and joy than you can imagine Or wait what about the kid down the street with hearing impairment I mean he is using up resources by needing a hearing aid!!!!!!!!.
        We are not talking about flecks of dust here, we are talking about LIVES, real lives, real HUMAN lives.
        The only person who I see who is “just DUMB” is you my dear,
        1. for not being educated before you open your mouth and
        2. for showing the worst of humanity in a few simple sentances.

        • Victoria is correct. Trisomy 21 aka Down Syndrome is a birth defect that carries with it a long list of medical issues. I notice whenever medical issues are raised the defender says Not all people with DS have medical problems. Thats true, but HALF have heart issues requiring surgery and thats just the beginning. Look at the percentages for yourself. Just cause it didn’t happen to your child doesn’t mean other parents arent struggling with a myriad of DS related health conditions in their child. Victoria is right. You just dont want to hear that Trisomy 21 is caused by an accident at conception. You can google the description of what happens to cause it. They are not a demographic, a race of people!! They are not at all. They are just the percentage of babies that have the condition. I wish there were more kids with DS around so my son wont feel alone when he is old enough to recognise his differences in ability but its a useless (totally useless argument) to get upset bout parents aborting. If they don’t want to all their time and money on catering to a special needs child they have that right! If they choose not to see their child suffer through life thats their right. Theres no argument. Its the parents that have to arrange and attend therapy and all the other medical appts and i wont even talk bout DS related leukemia which my son has. 7 months in hospital…get the picture? Its up to parents end of story.

          • You’re incorrect on the percentage that need heart surgery. And, there’s not an argument against a parent’s right, but that is a right to make an informed choice and here and elsewhere, there is a systematic failure to ensure that choice is informed, resulting too often in uninformed decisions. These systematic failings–imbalance in funding, lack of accurate counseling or materials–leads to fewer and fewer individuals with DS creating a normative effect that choosing to have a child or to decline testing is against that norm.

      • That’s all very judgemental of you. Says a lot about your own values, and none about those with Down syndrome.

      • Victoria, I think once you get some type of health condition, you should be terminated. You’ll be a burden to society.
        As I hold my newborn baby that happens to be DS, I see a daughter of God that has a right to life and its people like you that make me absolutely sick!

        • Congratulations on the birth of your wee baby! Lovely news!! One word of advice from a mum who has a young adult with DS is that when you face people like Victoria who are fearful and ignorant and who will be abusive like this, you need to learn to let it flow over you and not take it personally or be hurt by their meanness and inhumanity. Our kids doubly provide us with empathy, love & acceptance-all those things that ironically the Victorias in the world have very little, if any, amounts of. Enjoy baby!!

      • Three words Professor Stephen Hawking!

      • Well said Victoria! Hitler would be proud.

  5. valueall says:

    http://www.nads.org/pages_new/news/ruletheworld

    Check this out-“what the world would be like if people with Down syndrome ruled”…… very good and so true.

    • The human race wouldn’t exist because they wouldn’t have the ability to fend for themselves. I applaud you all for the whole lemons to lemon-aid bit, but the fact of the matter is that this is a birth defect.

  6. Shelley Lampe says:

    All opinions of what Down syndrome “is” aside, even given the very relevant examples of genocide described in this post, I always find it disturbing that people who think very highly of themselves and their intellect also think it somehow erudite and appropriate that “lesser people” be annihilated. I wonder how many of them think the holocaust was appropriate. Probably not many, because it’s not cool to think that people who are “normal” deserve death simply because someone doesn’t want them around. It shows their lack of depth, humanity, and reason when they buy into the lies that a person without an IQ below a certain number is simply not worth anything. They are puppets and cowards. I dare them to get to know someone with Down syndrome. It would change their stone cold hearts when they realize a person with Down syndrome is still a person, capable of love and being loved. And isn’t that what we all want?

  7. Shelley Lampe says:

    That should say WITH an IQ below…

  8. Wow – can’t image my world without my son in it. Normal? chromosomal abnormality? As far as my family and I are concerned, Down Syndrome is normal. So, he’s takes a little longer to do things and needs help with some stuff, he smiles and hugs any one who is willing to be hugged for no reason, everyone he meets is his friend, and he is just happy with life. More of the world should have this Abnormality! Even if I had known before he was born that he would have Down Syndrome, I would not have aborted him but that is my personal belief. I just think parents-to-be should be better informed before that decision is made. Maybe they should meet the members of the DS community at all different ages and stages of life to see what it is truly like.

  9. My daughter has made my life infinitely richer. I cannot quantify what my world would lose without her. What would the wider world lose, though? Well, here are a few things.

    She has a group of protective and supportive peers at school. They have learnt to accept and value someone different from themselves. They have exercised their compassion and expanded their awareness of others’ needs. How this will affect them in the long term, I do not know, but some surely will take this with them. A sensitivity to people who are vulnerable. A greater willingness to protect the weak. My daughter has taught them these things just by being who she is.

    She creates communities around her, at school, at church, among the extended family and beyond. This public, social good is perhaps intangible and probably impossible to quantify – but something of immense value for all that. Without my daughter the world becomes a bit colder, a bit harder. That’s what the world loses without her. A profound loss, I think.

    • edit: I realize the word ‘compassion’ here was ill-chosen as it can imply ‘feeling sorry for’ rather than ‘feeling-with’ – I wanted to point to the expansion of the circle of people with whom we have some kind of fellow feeling and the recognition of someone else’s humanity that comes with it.

  10. This article shows the lack of knowledge of the condition that is downs syndrome. Downs syndrome as a condition results from the formation of the DNA in cells that later form the person this results in three pairs of the chromosome 21 (trisomy 21). Individuals with down syndrome are not part of a race similiar to your analogy as they are born from non Downs syndrome parents and the condition can never be fully erradicated in the way you hint but can just be prevented on the bases of each individual case. Downs syndrome people are valuable because they are human not because they are Downs sufferers and should be treated like humans and valued as such. Not valued for a condition which you might think is lovely and variety is the spice of life yadda yadd but is actually a medical condition which negatively impacts their life causing early deaths dementia learning difficulties heart problems kidney problems and blindness. So before you want to spout some superficially beautiful and loving analysis on a condition just appreciate that the prevention of illness and disease is nothing but benevolent and does not mean a disdain disguist or disrespect for sufferers of such conditions.

    • Monty–I agree with you that Down syndrome is not a separate race. The analogy is not Down syndrome and race. Rather, the analogy is that people of goodwill recognize that when some aspect of the natural world–in the case of endangered species–or more specifically humanity–in the case of the tribes mentioned in the post–risk disappearing, there is a concern of what will be lost. My point is that same concern should be appreciated in the case of dwindling numbers of lives with Down syndrome, a condition that has been a part of human history and for which there remains no treatment or prevention.

  11. valueall says:

    Monty-your answer fits perfectly with the medical model of human life which just is not applicable for humans with some form of disability. Wellbeing, happiness etc etc is not determined by the absence of illness otherwise we would never see suicide among healthy individuals. Heart defects, learning disorders, dementia ra de ra-so what? Seriously it seems you can’t gain entry into the human race these days unless you’re perfect-what rubbish. I agree that people with DS should not have to justify their existence because they are loving etc etc but I think people like me who know a lot of people with DS have noticed that people with DS, without exception in my experience, have extremely high emotional intelligence and I guess that is behind many people making reference to this.

  12. Jeffrey Kraus says:

    Parents who knowingly give birth to a child with Down syndrome are short sighted and not considering the best interests of their children. Now matter how good you make their quality of life you are denying them the opportunities that you had, to become parents and have their own children.

    • In addition to this justification being mistaken in its basis, I doubt you’re consistent in your logic. It is mistaken to say that individuals with Down syndrome cannot be parents. While men with Down syndrome are typically sterile, that is not the case for women, and there are reports of both women and men with Down syndrome becoming parents. But even if your basis was correct, I doubt you would apply the same logic if parents could learn prenatally that their children were homosexual.

    • Who are you to judge parents and their children Jeffrey?

    • So according to Jeffrey, being alive is not in the best interests of people with Down syndrome. Do I need to point out that this is nonsensical?

      • Jeffrey Kraus says:

        The purpose of life is to have offspring. Since people with Down syndrome don’t have offspring it would been been in their best interests if they had been aborted and their parents had a sibling.

        Our society has been corrupted by the religious idea of the sanctity of life, that parents should value all of their offspring unconditionally.

        From Mother Nature: A History of Mothers, Infants, and Natural Selection by Sarah Blaffer Hrdy. (1999)

        In contemporary Western society, parents are respected and admired for caring for the same infants that in other societies mothers would be condemned by their neighbors for not disposing of. Some adopting parents in the West go out of their way to select the neediest infants, and commit themselves to years of therapy on behalf of children who will never repay that care in any material sense. Unlike other animals, humans are able to consciously make choices counter to their self-interest. Indeed, much of what we consider ‘ethical behavior’ falls in this category.

        • A Darwian Eugenicist it seems. And one who has appointed himself to judge others at that.

        • Condemned out of your own mouth there Jeffrey. At least you’ve come clean about where you stand.

          Just out of curiosity, what would you do with those who voluntarily decide not to have children?

      • Probally only to Jeffrey, but he’s a eugenicist and has issues with people with Down syndrome.

        • Jeffrey Kraus says:

          I think it is immoral for parents to give birth to a child with Down syndrome. The purpose of having children is that they will survive to maturity and then have children of their own. But unfortunately our society has been infected with this idea of sanctity of life that blinds them to the true purpose of children.

          • Well, that is a reflection of you. It doesn’t have anything to do with people with Down syndrome.

          • Do parents of children that don’t have children have to put down under your theory Jeffrey? I see that your last name is Kraus. Your not a descendant of Binding or Hoche are you? You share very similiar views.

          • @ Jeffrey Kraus Your argument that “it is immoral for parents to give birth to a child with Down syndrome” is just as paternalistic toward women as those you condemn for pressuring women to continue a pregnancy. Women and their partners are entitled to current and accurate information about Down syndrome so that they can make decisions that reflect their own values–not yours. And there are many women, both pro-life and pro-choice, who opt to continue a pregnancy after learning about Down syndrome. That being said, your credibility is significantly lacking since you readily admit that you have not interacted with people who actually have Down syndrome–and your reference to meeting people at an institution is a straw man argument. Most institutions were closed in the 20th century since most families started raising their children at home, and the outcomes for people with Down syndrome have improved significantly in the past 40 years. Moreover, as cited above, the majority of families and individuals with Down syndrome report that they are happy with their lives. Also, your criteria that a human being is only worthy of life if they can reproduce is completely arbitrary. What about people who, for whatever reason, choose not to pro-create or are unable due to sterility or endometriosis or any number of reasons? Any one of us can determine an arbitrary definition for those who are worthy of life. That being said, I’m done feeding the troll because you have no interest in seriously learning about these issues or people with Down syndrome but rather get satisfaction by eliciting a reaction from your completely ridiculous and uninformed position.

          • What Jean said.

          • Clear Thinking says:

            Wait a minute. If Down syndrome was a race or genetic group they could be eradicated but it’s basically a natural genetic mess up. They will never disappear as some people can carry the potential to make Down syndrome children without having it themselves. Since their syndrome is cause by a extra chromosome it is NOT biologically normal. People who argue that some with DS are normal are speaking from a social stand point not a scientific stand point. Ex: Dogs naturally have 78 chromosomes so if a single dog was found and it had 79, it would be a genetic anomaly and therefore not normal by its species standards. So why is there a exception in humans that this is seen as a “Gift” when it is a genetic mutation. Now mutations set the way for evolution but only if it is beneficial and helps the organism prosper. That being said if there’s a chance to prevent a human let alone a child at having a disadvantage then why not prevent it? I don’t think anyone with DS should be demonized nor should be seen as a miracle. One more point has anyone with Down syndrome achieved or accomplished that could not be done by someone without it? If so then what miraculous about them? I have a Down syndrome family member and they aren’t a miracle and aren’t normal by scientific standards. It only takes one examination of his DNA to see this.

  13. Jeffrey Kraus says:

    While it may be possible for individuals with Down syndrome to be parents the probability is very low. Of the 400000 people in this country with this condition, how many are parents? Of those who were fertile most would not be competent to be parents.

    I would not object to parents aborting a child if it were homosexual. But being homosexual has no impact on fertility or becoming a parent.

    It would seem that you would oppose a cure for Down syndrome because that would also cause a dwindling number of lives with the condition that has been a part of human history.

  14. Jeffrey Kraus says:

    Imagine in the future a treatment that prevents Down syndrome by preventing the implantation into the uterus of fertilized eggs with trisomy. Who would be against this treatment?

    • It’s cruel to be here promoting eugenics because of your own negative bias and discriminatory attitude against people with Down syndrome Jeffrey. They don’t need to justify their existence to you or anyone else.

    • valueall says:

      Plenty of people would be against this including me. Examples of people who I’d say would be quite happy with this treatment include Mengeles, Stalin, Saddam Hussein, Pol Pot, Maraget Sparrow and Prof Stone of Auckland Uni…..and anyone else into eugenics and who are discriminatory towards those with DS.

  15. Jeffrey Kraus says:

    Would you be against a treatment that reduced miscarriages? About half of them are caused by egg cells that don’t divide properly. Imagine a treatment so that all egg cells divided properly, this would reduce miscarriages and prevent trisomies.

    http://www.babble.com/pregnancy/causes-miscarriage-chances/

    • The question to me at this point is why you’re so desperate to prove that people with Down syndrome should not be born. You’ve shifted your ground again and again, from reproductive rights to bogus concern for life quality to eugenics, and now you’ve moved on to miscarriage. What do you have against people with DS? Or are you a wind-up merchant with too much time on your hands?

  16. Jeffrey Kraus says:

    I am against the Down syndrome community for pressuring parents to not abort when they receive a prenatal diagnosis. A biased view of the quality of life for the child and personal growth of the parents is presented while ignoring the fact that they will not become parents themselves.

    • Do you know anyone with Down syndrome? If so, for how long and how often do you spend time with them?

    • Where is your evidence of this alleged pressure?

      • Jeffrey Kraus says:

        A post at http://open.salon.com/blog/amytuteurmd/2009/10/08/should_we_lament_the_disappearance_of_down_syndrome describes how Down syndrome support groups want to counsel expectant parents.

        An article at http://abcnews.go.com/m/story?id=8960803&ref=https%3A%2F%2Fwww.google.com%2F talks about a Down syndrome group counseling an expectant parent.

        These groups are self-selected with parents who are happy that they kept their baby. Parents who are unhappy with their baby are not going to join these groups to provide counseling.

        • OK. So first you said:

          “I am against the Down syndrome community for pressuring parents to not abort when they receive a prenatal diagnosis.”

          and now you are saying:

          “Parents who are unhappy with their baby are not going to join these groups to provide counseling.”

          So, those who don’t want couseling are not been counselled.

          • Jeffrey Kraus says:

            The Down syndrome community seems to be composed of mostly those who advise expectant parents not to abort. For balance, the community should seek out parents who regret that they did not abort.

            A summary of a discussion related to parents and their disabled kids is at http://magstheaxe.wordpress.com/2012/05/04/dear-parents-of-disabled-children-do-you-regret-having-your-children-part-i/

            One post about an adult with Down syndrome is at http://www.reddit.com/r/AskReddit/comments/sl93q/get_out_the_throwaways_dear_parents_of_disabled/c4ex98o

            I’m not a parent, but my second cousin (much older, in his 60’s) and his wife have 4 daughters.
            Let’s call the oldest K. K was born with very severe down syndrome, diabetes and as a celiac. They said she had absolutely no chance of living past 5 years old.
            The father is a retired surgeon and the mother was a nurse. She gave up her job at 24, when K was born. She raised 3 other daughters, of which 1 was diabetic as well (she was also a huge problem child. Out of control, really). She gave up her life when K was born. She expected to be back at work within 10 years.
            K is 43 this year and still requires full time care. She works at a factory that is specifically for down syndrome people. She has to have her blood tested several times a day, which means that one of her parents has to drive for 30 minutes to check it, then 45 minutes home. She is dropped off and picked up by her parents every day she works. They have to measure every meal she eats with a measuring jug to check ensure she maintains a healthy diet and get up three times a night to check her blood.
            As is usual with down syndrome patients, the older she has gotten, the more difficult she is to deal with.
            I sat with her mother one night drinking wine, talking to her about it. After a few glasses, she broke down. She never got a chance to live her own life because of K. Not in their wildest dreams did they expect her to live as long as she had.
            The mother is a wonderful, kind woman. I’ve never seen someone with so much love.
            She looked at me and said “I wish she’d just die already.”

            For example the site http://www.savingdowns.com/ only represents the happy parents. Is this your site? Do you reach out to those who feel as the above parent to promote their views and counsel expectant parents?

          • Haha, we have run out of reply boxes. Saving Downs advocates for people with Down syndrome. That’s it.

    • valueall says:

      “Quality of life” is a very dangerous term for devalued people in our communities (those with intellectual disability, physical disability, dementia, mental illness, obesity, the elderly etc etc etc) as it is dependent on the interpretation of those who are considered to be of more value. You assumption and bias re the ” quality of life” of people with DS reflects this prejudice beautifully. The term is now being used less and less because of this. Just thought I’d update you on this fact.

  17. Jeffrey Kraus says:

    No, I don’t know anybody with Down syndrome.

    It seems that some in the Down syndrome community are pro-life and speak only of the positives. For one view not so positive read
    http://jezebel.com/5918797/people-with-down-syndrome-can-be-jerks-too

    The pro-life people forget that abortion is for the benefit of the mother.

    • I hope you will take the time to get to know the people & community you are opining about so that your positions may be informed by actual experience.

    • Jezebel? The bastion of disability rights campaigners I think not.

    • To start with that article you reference, the author’s point is that people with Down syndrome are people, not angels. I agree with that. I know that others who comment her would agree as well. And you seem to have missed both her obvious affection for her aunt, and her main point which she sums up at the end: ” I’m terrified that on some level, I, too, have stripped Sandra of her agency and dignity as a human. … She may have the sunny smile that’s become the face of Down Syndrome, and she also deserves the choice to be cranky, needy, angry, suspicious, manipulative and scared” I don’t see any support here for your views.

      To deal with some of the other things, yes some people in the DS community are pro-life. Others are pro-choice. So what? In either case, we want prospective mothers to at least make an informed choice if they get a pre-natal diagnosis. Statistics actually tell you relatively little about what it’s really like to have a child with DS.

      And what any of this has to do with the contravention of your imagined state of nature in which disabled children are left to die I don’t know. Your reasoning is so scattered it’s hard to make sense of.

      • Jeffrey Kraus says:

        Parents deserve unbiased information and that can only come from scientific studies. Any reports from individuals are going to be biased. For example, a study shows that mothers of Down syndrome children have lower mental health, see http://www.skepticalob.com/2009/10/mental-health-in-mothers-of-down.html

        The Down sydrome community seems biased toward keeping their child. To be unbiased they should seek out parents who regret their decision of not aborting.

        The pro-life view is that the life of the child is most important but throughout human history the well being of the family and community are more important.

        • Jeffrey–rather than just doing Google searches, first get to know members of the population you wish to judge and write off. Then, I will look forward to your future messages as I think your actual experience will better inform your opinions. Failing to do this is willful ignorance on your part.

        • I’ve come across this attitude before. You will only believe something if an expert tells you it is so. This is really an appeal to authority.

          You cannot know a person without meeting them, talking to them, spending time with them. And this does engage your human sympathies, which I would have thought was entirely proper, ethically speaking. Without this you are speaking out of profound ignorance.

          On your final point – firstly this is very dangerous when we are talking about depriving people of their lives because they do not fit. Google Albigenses, followed by Inquisition, and then perhaps round off with some anti-semitic pogroms in medieval Spain. These were all done for the greater good. But even in your own terms, your argument fails. I can readily falsify it with the case of my daughter who has brought immense benefits to my family and the wider community. I outlined some of these above.

          Mark is right. Spend some time with people with Down syndrome. You might change your mind.

          • Exactly. And direct experience is one of the sources of right knowledge.

            The Germanic people are also quite experience in depriving life because of “lives unworthy of life”. Those attitudes still seem to be around for some of German descent.

  18. TErri leyton says:

    Oh, wait a minute. Jeffrey is not a parent, according to him, his life could not possibly worth living and he must be a terrible disappointment to his parents. Maybe his mother should have aborted him!

    • Kraus may be a parent, he hasn’t declared. He may even have been a parent. The thing is, you see, is that he supports infanticide for infants who don’t meet his own definition of perfect. That’s right, Kraus supports killing babies who don’t meet his criteria for living. He’s said so himself on the Saving Downs blog.

  19. Jeffrey Kraus says:

    There is an institution for the developmentally disabled near where live. If I was to meet a person with Down syndrome there who is non-verbal how would that experience improve my knowledge? It might lead me to believe that all people with Down syndrome can’t speak.

    Down syndrome organizations deceive expectant parents by showing only those with high function, not those with low function residing in state institutions.

    How do you know I don’t have children, I never mentioned whether I was a parent. And the ad hominem attacks show a lack of character.

    Why do you want more children to be born with Down syndrome? This article may offer some insight, see http://magstheaxe.wordpress.com/2012/01/22/warm-fuzzies-disabilidentity-and-disability-rights-part-1/

    • More willful ignorance–that you know where you could meet people with Down syndrome, but instead of actually doing so, you predict the effect of that never-been-experienced experience. Again, before you post next, take a step to get to know a member of the population you wish to judge.

    • Like if you met a person who is deaf, you might assume that all people are deaf. Assumption is not a basis for right knowledge.

    • No. Down syndrome organisations advocate for people with Down syndrome and their families. Your discrimination lacks discernment. All people are unique in their abilities. The bias is your own creation.

    • If you do have children Jeffrey, do you judge them as much as you judge others?

  20. Jeffrey Kraus says:

    I went to the institution for the developmentally disabled yesterday during lunch and met two people with Down syndrome. I didn’t talk with them as they were non-verbal but did learn about them from their carers. The institution stopped accepting new admissions some years ago and so they have been there many years. Those remaining behind are too disabled to be moved to group homes. They currently have over 200 residents down from 349 residents nine years ago, http://lacrossetribune.com/news/bucking-a-trend-some-families-resist-moving-developmentally-disabled-out/article_0ad87174-072c-5450-9fe8-b4f3167c53a4.html

    It is not a matter of judging, I wound not risk my child being this disabled. Refusing prenatal testing and selective termination is just as immoral as refusing vaccinations.

    Why do you want more babies born disabled, perhaps a desire for political power?
    http://www.downsyndromeprenataltesting.com/outlawing-abortion-wont-help-children-with-down-syndrome-history-might-suggests-otherwise/

    • Fascinating work Kraus. Did you declare the intent of your “visit” to the carers so that they could assess any risk that you may have posed to the safety of the residents? You could, off course, communicate with people who don’t speak if you made the effort, they most likely understood you though.

      As to this statement:

      “It is not a matter of judging, I wound not risk my child being this disabled. Refusing prenatal testing and selective termination is just as immoral as refusing vaccinations.”

      This is, in fact, a judgemental statement. You are judging the morality of another person’s action. As I pointed out earlier, that only speaks of you and has nothing to do with those that you seek to judge.

      Back in the real world, our children have great lives, despite the bigotted views that still prevail as presented by judgemental people such as yourself.

    • StelLa McLeod says:

      Jeffrey, Try meeting people with Down syndrome who have grown up with their families, with possibly mainstream education and higher expectations of what they can do. A few will be non verbal but many others are capable of talking. Even if someone is non verbal there is no reason why they wouldn’t have appreciated it if you had tried communicating with them. Institutionalisation from a young age combined with low expectations and a lack of education also contributes to developmental delay and intellectual disability. By the way most people with intellectual disabilities do not have Down syndrome and many if not most do not have conditions that are prenatally detectable. Some even acquire intellectual disabilities as a result of illness or injury. So why pick on one particular group just because you can count their extra chromosome? We have absolutely no control over our genetic make up, so it ill behoves someone to believe themselves more superior to others on account of their own DNA.

  21. You’re a troll, plan and simple. However; you’re a man. You cannot have a baby, or know the grueling joy of birth. So you don’t have a right to open your fat mouth. My brother has down syndrome, he’s my whole heart and rock. My mom didn’t get tested and she kept him, why? Because her baby was alive, that’s why. Her uterus, her choice. They’re loving wonderful people. Maybe you need to go volunteer at a place for disabilities and get your facts straight and meet some of these supposed mistakes. Anyways, I hope you either get educated and get your facts straight. Or shut the fuck up and let us live our loves and love our Down syndrome family members.

  22. Jeffrey Kraus you seem to be basing your opinions on one data point. The following video makes all your arguments invalid.
    http://www.youtube.com/watch?v=9gaSx44pEvk

  23. We really should not be in the position of having to defend the human dignity and worth of people with Down syndrome. Things have improved those with DS the last thirty years, but people like Jeff prove there is a long way still to go.

    It really should not be respectable to suggest that people born with disabilities are worth less than others, still less that killing children with disabilities is no worse than slaughtering a pig or a cow, as Jeff suggested in a comment on Mike Sullivan’s blog: http://www.savingdowns.com/arent-we-the-clever-ones/#comment-322

    I’m done talking to you Jeff. Your views are disgusting and apparently impervious to argument or experience. Really, you are just a bigot.

  24. Jeffrey Kraus says:

    No more would be lost if Down syndrome were to disappear than was lost when smallpox disappeared. Infectious diseases have long been a part of the human condition as have birth defects. Vaccinations are used for the prevention of infectious diseases. A number of methods such as nutrition, prenatal testing and selective termination are used for the prevention of birth defects.

    See the report at http://www.marchofdimes.com/mission/march-of-dimes-global-report-on-birth-defects.aspx for more on the prevalence and treatment of birth defects.

    • Down syndrome is a naturally occurring chromosomal condition that has always been part of human diversity. You are just regurgitating eugenics theories. The concept of prevention is a social construct based on ignorance and judgement of one group of humans against another – simple discrimination. Is has been tried before. It failed. It will continue to fail as our social justice movement continues strengting and securing successes.

      • Travis Herold says:

        Schizophrenia and severe autism are also “natural” but you won’t find anyone against ridding the world of those things.

        • Look again at what Kraus is arguing for. His ‘cure’ for DS is death. The equivalent, in your analogy, would be treating people with schizophrenia or autism by killing them. I think you will find quite a lot of people against this.

  25. Hey look Jeffrey-it’s ok, we all know you are fearful, uninformed and discriminatory against people with Down syndrome; so you don’t have to keep trying to think up issues that you think will shock or surprise us-trust me-we’ve heard it all. So this is a chance for you to bow out of this. We’ve heard you and are just shaking our heads at the ignorance and inhumanity of your comments but as I say-give yourself a break and maybe hop on another site and meet your need to provoke and hurt people somewhere else. Better still-take up knitting or something else that keeps your hands occupied so you can’t knock out anymore of this devaluing diatribe.

  26. I have a genetic condition similar to down syndrome which causes intellectual disabilities and multiple disfigurements. Anyone that would knowingly bring someone into the world with a disability like down syndrome or any other intellectual handicap or any other deformity is cruel. This is a cruel life. This is a life denied of everything enjoyable and everything worth living for. Did you people ever think about what if it was you. What if you were cursed, woke up one day and had to spend the next fifty years living with down syndrome. It would be hell and you know it. It would be degrading, and a misery. I’ve lived this kind of life and I know. I hate it. We should at least be allowed to be euthanized.

    • I believe it was the Buddha that said “all life is suffering.” Your logic that this is a cruel life and therefore euthanasia is justified would then apply to all humans. And, your view may be winning, given the expansion of legally-authorized euthanasia throughout the world, most recently an effort to allow euthanasia of children with special needs in Belgium. I am curious what genetic condition you have that is “similar to down [sic] syndrome.” Regardless, at least when individuals with Down syndrome are surveyed, they do not respond that this is a cruel life. Rather, they say they are happy with their lives. There is suffering inherent in the human experience, but the vast majority that is degrading and misery is not caused by having an extra 21st Chromosome but by how others treat those with Down syndrome. Allowing euthanasia would not address the real problem that needs to be changed: how we treat one another. I hope that how you are treated improves, and that you respond in how you treat others.

      • Ara, I am sorry our life is so terrible, as a mother and sister of people with interllectual disability including but not limiting Down Syndrome, your logic has reflected your own personal journey as does mine, but yours is not backed by the research conducted into young people living with Down Syndrome, its also not my experince with either my Sister or my son (who has DS).
        My son has travelled the world with us, has many outlets of enjoyment including being a Judo compeitor, a keen fisherman and a mad keen Soccer fan, he is valued(and not just by us but a whole community), loved and lives a very average everyday life, has his life been harder than my other kids? yes and no, its been a life with its ups and downs, but each of my children has had their own trials……my 19 year old is currently learning what its like to live in the big bad world, he learning that budgeting is the key to survival as a Uni Student and he is learning that Adult life is not as forgiving as teen years……my Daughter has survived 3 open heart surgeries and is 16 and a Honor roll student…….by your account she should of been killed at birth to save her suffering…….she is horrified by your reflections and tells me her life has been more than worth fighting for a living……ohh and she also has a hearing impairment to add to the list of disabilities she has. She was considered NON viable at birth and we where told she would be disabled and unable to function on a normal level. They were wrong just as the assumption that a life with a disability is not worth living…….
        I am sad that your life is so hard, but I fear it has more to do with the attitudes around you and the enviroment you life in than the acutal condition your living with, happiness is a state of mind not reflective of a condition. Knowingly bringing a child into this world fullstop is a Journey that NO one can predict the outcome of. If we mandate the killing of babies before or shortly after birth due to a disability what next? do we kill the child with Vater Syndrome? with CDLS? with CHD’s? or do we move to the children with missing limbs, blindness or hearing impairments? and then maybe the children who gets Cancer or aquire a brain injury after birth from a accident. I know people with all those conditions and frankly it just sounds completely cruel and heartless that we are even having this convo not to mention the slippery slope that this then opens up……All life is worth living, all lives are hard, sad, happy, painful, and Joyful at different times…….Our world needs to wake up, we have it all upside down…….

    • Ara thankyou for being honest. The down syndrome community are so focused on trying to make it all appear sunshine and rainbows that it is THEM who have lost the plot. They ignore medical and scientific evidence….I dont know why. I guess it doesn’t support picture they are TRYING to paint so far as Down Syndrome goes. We all know the truth. So many people on this thread have been accused of having a problem with people with DS but its so clear thats incorrect. And they are right when they tell you idiot DS advocates not to worry about there being no more kids born with DS…as my lawyer says…the only people who choose to give birth to disabled children are religious people. There will always be religious people giving birth to poor kids with birth defects so really…dont worry.

  27. I recently learned that Denmark has an open policy of eradicating Down syndrome through aggressive prenatal testing and termination of fetuses with DS. This horrific policy, mirrored in many other countries, is a slippery slope. Who is next? The fetuses testing for autism? Those who have an elevated risk of mental illness? Homosexuality? What does it mean, then to be human?

  28. Sounds like people with down syndrome bring great joy to mothers, families, and society. Think how happy our world would be if everyone had down syndrome. From the sounds of it, it would be amazingly beneficial to all.

  29. Peter Osmo says:

    Unlike those ‘lost’ tribes, down syndrome will always be a potential product of reproduction. Your argument is idiotic.

    • I appreciate your well-reasoned response and am sure others will find it convincing. While Down syndrome is naturally occurring, and therefore pregnancies will continue to happen, my point is wondering why we lament the losing of a portion of human diversity in the “lost tribes” and the expressed desire to preserve them while we have active public health plans designed to eliminate the portion of human diversity provided by those with Down syndrome.

  30. All this talk about how having a Down syndrome kid is okay is down right idiotic. These kids are mutated proteins that parents have look after forever, who in the right mind would call thier Down syndrome kid happy. Thier life probably sucks so bad.

    • Your final statement suggests you don’t actually know someone with Down syndrome and must guess then that their life “probably sucks so bad.” If you don’t actually know, then you have no actual reason to support your first statement that having a child with Down syndrome “is down right idiotic.” I’ll leave others to decide which is idiotic: having a child with Down syndrome or proclaiming that is idiotic when you don’t actually know anyone with Down syndrome.

      • Hi, my sister was born in 1964 with Downs. She is still alive, still has the mental capacity of a 4 year old, and still needs life long care, day in day out, every day regardless what else is going on in the daily routine of her care-givers. Our parents didn’t ask me or my other siblings if we wanted to be responsible for her care after they died but if they had given us that option, we all would have said “sorry not sorry, abort”.

        The reason people are opposed to genocide is that murdering a group of people who can provide for themselves is wrong. You know what else is wrong? Deliberately bringing a child into this world who will never be able to provide for themselves and will (mostly) only be a BURDEN to others.

        I suspect it is that last (capitalized) word where people like you and people like me, disagree. I suspect that some people measure the value of their worth as a human being on the amount of needless suffering they subject themselves to, and people like me have healthier amounts of self esteem so we measure our value in other ways.

        Fact is, people with Downs cannot exist by themselves, by definition they need life long supervision. That supervision and care must come from other people — so to ignore the enormous amounts of time and energy other people must give, is ignoring the entire reason most people choose to abort. It’s not selfish at all to realize that one’s energy is better invested elsewhere, say raising children who can grow up, provide for themselves and reproduce if they so choose.

        Your need for unconditional love from a “happy happy Down kid” and your need to work selflessly for the benefit of others, can be better achieved in other ways. You could volunteer all your time at The Humane Society or Hospice, there are literally a million other places to fulfill that need. Or perhaps you are unconsciously terrified of developing a chronic illness and the other people around you refusing to help you — this is an unrealistic fear. Or perhaps you identify strongly with a person with Downs for some reason, and are trying to prevent yourself from being aborted. I do not claim to know the precise mechanism which drives you, the mind sometimes works in mysterious ways. But what I know for sure is that deliberately bringing a child into this world with known disabilities, is absolutely morally and ethically wrong.

        It would be productive if people who think as you currently do, are given incentives to stop. I do hope that one day soon, that insurances companies will insist on testing for abnormalities, and refuse to pay for care for the lifetime of the person with severe defects should the parents refuse testing and refuse to abort. It was their choice to bring a disabled child into this world, so of course they should be responsible for that choice. Notice what you do:

        First you advocate for deliberately bringing a child with known disabilities into this world, then you want other people to pay for it, then you want appreciation for all the “selfless work” you do. That is mental. Drop the sacrificial goat routine and get a life.

        Btw. You know what else has been eradicated? People with polio. Should we bring that back? According to your own argument, we should indeed.

        • Jasper–Your comment speaks for itself and I expect readers will give it the merit it is due. I’ll respond to those points I think are salient:
          [1] it sounds as though your sister has received very good care, given that she has exceeded the life expectancy for a person with Down syndrome at the time she was born. Moreover, it sounds as though she has received care from others, and not from you, so I don’t understand your obvious anger, since you haven’t been the caregiver yourself. And, you’re response is in the decided minority of siblings who overwhelmingly report valuing and loving their sibling with Down syndrome.
          [2] Your pronouncements that bringing a child into the world that will be a burden is a moral wrong and likening Down syndrome to polio are both flawed. I’ll take the last one first: “people with polio” were not eradicated; rather the polio vaccine was developed which prevented the onset of the polio disease. There is no such vaccination for stopping the extra 21st Chromosome at the point of, or near-in-time to conception. This leads to the fault of your pronouncement on morality: it is impossible to predict how any fetus will develop as an adult, and this applies equally to Down syndrome. Your sister was born at a time when individuals with Down syndrome did not receive the early intervention therapy, education at public schools, and inclusion in community like individuals with Down syndrome have since the 1990’s. The percentage of individuals with Down syndrome who live independently or semi-independently grows with each passing year and similarly the percentage of individuals with Down syndrome who need the level of care you say your sister does is diminishing each year. There is no way of knowing prenatally what your child’s needs will be so it cannot be said conclusively bringing any child, with Down syndrome or otherwise, is a moral wrong because that certainty in how that child will develop is impossible to predict.

        • It’s not about us.

  31. Travis Herold says:

    We must stop this downs holocaust at once, and ensure as many babies as possible are born with this type of mental retardation. In fact, hopefully one day we can ensure ALL births are downs babies.
    Then, when everyone is downs…

    No-one will be.

  32. *Applause* Travis Herold. 🙂

  33. So, here’s a question. Not so much about to abort or not to abort a DS pregnancy, but, if there was a treatment or “cure” or whatever you’d like to call it, that can be administered to the fetus while still in the womb, that “gets rid of” the Down syndrome in the child, so they can be born “normal”, would parents of DS children choose to use that? Or would they still like to continue on with the DS pregnancy like it was originally. Just curious to see what parents of DS children would choose. Very interesting topic, I like all the different views. 🙂

    • Tiana–a development from 2013 makes your question less of a thought-experiment, as researchers were able to “turn off” the extra 21st Chromosome, albeit in cultured cells in a petri dish. I covered that development and the questions you pose in this post and this one. I also presented at the Down Syndrome Affiliates in Action conference earlier in 2014 with Mark Bradford, Executive Director for the Jerome Lejeune Foundation. We were a bit of a point/counterpoint, with Mark B. taking the “pro” treatment side and me taking the “con” side–which oversimplifies the presentation, more of a “here’s what this could hold in a positive way” and “shouldn’t we be skeptical a bit?” In the end though, science will progress, and if there is a “treatment” it will be left to the parents to decide. Then the real issue will be whether their choice will be respected, whichever way they choose.

  34. I just have a series of questions for everyone; assuming you had the ability to choose, which option in each of my questions would you pick:
    If you could pick between you child having one arm or two, which would you pick?

    If you could pick between your child being blind and being able to see, which would you pick?

    If you could pick between your child having a syndrome (take your pick) and not having a syndrome, which would you pick?

    My questions are only pointing out that we want our children to be the best, most exemplar humans in the world. I am not calling into question your love for your kids.

    BUT I do have one final question for people with children that do have down’s; you all seem to love your children – I applaud that; that is a sign of a good parent. But would you willingly choose to give your child down’s syndrome if they DIDN’T have it?

    • All of your questions ignore that continuing a pregnancy is not “giving” the child/fetus Down syndrome; it already has it. And, aborting a child/fetus because he/she/it has Down syndrome is a different ethical decision than proactively imposing an extra chromosome into their cells.

      • I am not “ignoring” this; it was theoretical/rhetoric in nature. If it were possible to remove the damage / repair the chromosomes of a fetus with Downs, then I would have mentioned that as a viable option.

        This is currently no more possible than giving a fetus who is about to be born with only one arm a second arm.

        But instead I said “assuming you had the ability to choose”; this implies they currently do not. Or did you just skim over that part and assume I have no idea what I am talking about?

        • Jordon–perhaps I missed the point you were trying to make with your questions. Feel free to clarify.

          • Sorry for the late reply; I don’t frequent this site, but I was wondering if there was a follow-up.

            The point I am making is that there is a harsh reality with this syndrome and most other birth defects (“defects” being used broadly here to include every negative thing possible with a birth).

            That these defects are not something people would willingly choose to give their children, and the study you referenced reflects this. Unfortunately abortion is one of the only methods to not have a child with such a defect.

            As we have both mentioned, nobody chose to give their child Downs, but some are born with this trait. My point boils down to this; people love their children, which is understandable, but it appears from some commenters that they do not realize the reality – that if they actually had the choice of having their child born with or without Downs, that no one would choose the former (assuming they didn’t have to get an abortion).

          • I expect there are a number of things about ourselves we all would have chosen against, being too short, bald, non-athletic, not good with math, etc. The point of this article is that perhaps humans deciding on what they think is desirable has a history of unintended and negative consequences. Rather, perhaps there is a point to having all the diversity provided by nature and we should be humble in accepting that.

          • People do not like to accept what nature gives us. We have developed a great variety of technology, vaccines, shelter, agriculture, so that we don’t have to accept what nature gives up.

            So why when it comes to children should we accept what nature gives when we can now choose?

          • Why stop at children with that logic? Why not some adults?

          • Valueall says:

            yes-Jordan-would you like to see us re-introduce the technology the Nazis had to eliminate devalued people (starting with the disabled and ending with the Jews)?

          • Valueall says:

            i.e.-just because you have the technology doesn’t mean you should use it.

  35. Unless YOU have downs yourself, then you have no right to argue in favor of it. Your argument that life is great with downs is invalid. I don’t care if you have a sibling with it or even a child with it or if every person with downs you’ve ever met has claimed to be happier than a pig in shit. You had the privilege of being born normal so you can’t speak for them.

  36. It’s children WITH ds not ds children. My God you’re all annoying.

  37. Thanks a lot for this article.

    A Dutch student

  38. Down’s Syndrome is an abnormality in the human genetic code. They usually don’t lead normal lives and will never compare to a normal person. For all those people who believe that DS children are ‘normal’; if you had a choice, would you rather:

    a) A perfectly normal, healthy child.
    b) A DS child

    In this choice, you can’t have both.

    The reason why Down Syndrome-positive maternal parents abort is because if they actually birthed them, they would have to take care of them their entire remaining life. A lot of DS parents I’d assume are miserable.

    Honestly, in my opinion, DS should go ‘extinct’. There’s no real con in it happening. They’re a waste of money and resources which could be better spent on something else because 99% of them will never contribute to society. Actually, they should be sterilised. Downs Syndrome is a serious inheritable disability. Which sane person who cares about the human race would want their genes in the gene pool.

    For those who thought they would’ve wanted *specifically* a DS child instead of a normal child if they had a choice, I would actually recommend help.

    You can leave your butt hurt and epic lulz down in the comments below. 😉

    • I’ve approved your post just to show how much ignorance and hate there is out in the world. For instance, you say that Down syndrome is “a serious inheritable disability.” No it’s not. And if you dispute that, then provide the proof that Down syndrome is “inheritable.” And regarding “perfectly normal,” your reasoning is that because Down syndrome is an “abnormality in the human genetic code” then those with it are not perfectly normal. That same reasoning then would mean that any “abnormality in the human genetic code” would necessarily mean that person was not “perfectly normal.” I dare you to have your own genome tested and you’ll find out all the abnormalities you have and therefore you are not “perfectly normal.” The same would happen for any of us who mapped our genome. There is no such thing as “perfectly normal.” But there is such a thing as an ignorant, hateful internet troll, as your comment proves.

      • Adolf Hitler reincarnate says:

        Ok… I just looked it up. Most DS cases aren’t inheritable. :/

        However, you mentioned none of us can be defined as “normal”. This I probably can dispute.

        Humans usually have 46 chromosomes. Down Syndrome is caused by an extra. This is a genetic abnormality.

        Which somehow leads to lower intelligence and a higher chance of various mental issues. And a different-looking face. And a lower life expectancy.

        http://www.henryspink.org/down's_syndrome.htm

        I still think it’s not okay to bring in a child who will not be able to take care of themselves in life.

        Ok, honestly, I don’t know why I’m on this site. I was just in a ‘bigoted’ mood if that’s a thing. No, I didn’t used to be a bully as a child. I’m also just past 16 years old.

        • Your comments speak for themselves as far as your compassion, maturity, and your relative intelligence.

          • Adolf Hitler says:

            Ok, sorry about before.

            But on the original point of the article, I don’t have a burning hatred for people with Down Syndrome, but I’m honestly indifferent to its ‘extinction’. Also, you mentioned something about extinction of minor ethnic groups. Yes, that would be bad. I don’t see how Down Syndrome’s ‘extinction’ would be bad, because it’s a disorder. Not an ethnic group. Not an almost extinct rare species of animal. Specifically a genetic disorder.

            I’m not saying everyone should perform ‘genocide’ (If that’s the right term) on Down Syndrome. I just wouldn’t care if the syndrome itself magically disappeared tomorrow. I’m indifferent to it. That doesn’t make me an uncompassionate asshole.

          • Indifference is the opposite of compassion. So, by admitting your indifferent, you admit you’re uncompassionate.

  39. ProChoice says:

    I would terminate a pregnancy resulting from rape and I’m staunchly pro choice. If a woman decides she cannot deal with an eternal 4 year old and terminates, that is her prerogative. It’s not extinction unless all humanity goes extinct. I consider it reprehensible to force parents to birth and raise kids with incurable, severe defects. Who will care for the eternal 4 yr old when the parents are too elderly? Force the siblings to care for their DS sibling? That’s not right.

    I have known people with DS and they are not all unicorn and rainbows and cuddles. No one mentions what happens to males with DS that become men with the intellect and critical thinking skills of a child. I witnessed a male DS sexually assaulted another male with DS and nothing was done about it. I was told they weren’t legally accountable for sexual assault! Also, I was punched by a guy with DS in high school for no reason and it hurt like hell and I’m female! My friend’s sister has DS and I have known her almost her whole life; she has to live in a group home, can only have an incredibly simple, part-time job and she cannot manage her own money. She’s almost 40 and will probably have a shortened life span and early onset dementia.

    I know someone who birthed a DS boy and that is her choice but her son is profoundly retarded, not Mosaic etc. Who will care for him many, many decades from now? He has no siblings either.

    My genetically normal children at least have a chance at normal, independent, self-reliant, healthy lives. There are no guarantees in life but to knowingly inflict a life of a permanent incurable genetic disease seems cruel, to me.

    Life is hard enough as it is.

    • Hard-hearted people who do not take the time to get to know others they wish to judge, and who claim a pro-choice position but condemn those who make a choice she disagrees with are a big reason that life is hard enough as it is. Perhaps if more people were more compassionate and took the time to get to know and care for another person, instead of seeing one thing a person does and judge them just on that, then life may be better for everyone. It certainly would be for the person wishing to cast judgment.

  40. I cannot even imagine life without Down syndrome. Admittedly, I knew very little about the condition until my son Max was born. I have learned a great deal, and am sure he will continue to teach all of us to look with our hearts. I have had the pleasure of meeting many individuals with DS and I can assure you that the world is a better place with them in it. The honesty and integrity that flows from each of them is a gift and should be a constant reminder to all of us to appreciate everything for what it is. God has a plan and He most certainly does NOT make mistakes. We are all unique for a very specific reason. Thank you for all of your enlightening articles, Mark.

Trackbacks

  1. […] fifth post asked a further related question: “What are we losing if Down syndrome disappears?” With the fourth most-read post wondering if Down syndrome was disappearing, this post asked […]

  2. […] team of researchers reviewed the registries maintained by the EUROCAT system–the European Surveillance of Congenital Anomalies. Here’s what they […]

  3. […] the ability to make a choice that’s best for them (i.e. to terminate, as is already done in more than 75% of those cases in the […]

  4. […] there will be any Down Syndrome people alive at all in the not too distant future. Here’s one. Here’s another. Here’s a list of such publications. Does anyone doubt that the […]

  5. […] the ability to make a choice that’s best for them (i.e. to terminate, as is already done in more than 75% of those cases in the […]

  6. […] For example, this information came and went in a mere blink: “Here’s a recent Danish headline: ‘Plans to make Denmark a Down’s syndrome-free perfect society.’ The Danes want to promote aborting fetuses with Down syndrome, so their society will be free of “such people” around 2030. One bioethicist describes it as a ‘fantastic achievement.’” Actually, by today’s standards, that headline is old news (from 2011), and was so little challenged, that their “fantastic” policy continues. Europe and beyond systematically eliminate the births of people with Down syndrome with great success. (Further easy to follow charts and links on the state of eugenics are included here.) […]

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