Down syndrome, prenatal testing, and abortion–it’s complicated

Ross Douthat recently wrote a column about “Eugenics, Past and Future.” He writes:

given our society’s track record with prenatal testing for Down syndrome, we also have a pretty good idea of what individuals and couples will do with comprehensive information about their unborn child’s potential prospects. In 90 percent of cases, a positive test for Down syndrome leads to an abortion. It is hard to imagine that more expansive knowledge won’t lead to similar forms of prenatal selection on an ever-more-significant scale.

The number gets thrown about all the time: 90% of babies with a prenatal diagnosis of Down syndrome are aborted. Often it’s reported in shorthand, 90% of babies with Down syndrome are aborted. The latter statement is patently untrue. The former is somewhat inaccurate. And these numbers matter.

To explain the patently untrue part: Many women self-select out of a prenatal diagnosis, whether because they would not abort a baby with an identified genetic abnormality, or because their chance (based either upon age or prenatal screening tests) of having a baby with a genetic abnormality is low, or for some other reason. Only 2-3% of all pregnant women choose CVS or amniocentesis, the current definitive tests for chromosomal abnormalities, including Down syndrome. When you plot out the number of women who we would expect (based upon population studies and maternal age) to be having a child with Down syndrome versus the number of babies who are born with Down syndrome every year, we can conclude that 50% of babies conceived with Down syndrome are aborted. Presumably most of those abortions are based upon information gained via prenatal testing. (Prenatal Diagnosis, February, 2011, James Egan, et al.)

To explain the somewhat inaccurate part: Of the 2-3% of women who receive a definitive diagnosis that their baby has Down syndrome, some studies have demonstrated that approximately 90% of those women chose abortion. Those numbers usually come from single studies that indeed demonstrate an abortion rate around 90%. But a review of all the available studies from 1995-2011 in the United States of women with a prenatal diagnosis of Down syndrome (by Jamie Natali, et. al., in Prenatal Diagnosis, 2012, 142-153), demonstrates:

The weighted mean termination rate was 67% (range: 61%–93%) among seven population-based studies, 85% (range: 60%–90%) among nine hospital-based studies, and 50% (range: 0%–100%) among eight anomaly-based studies. Evidence suggests that termination rates have decreased in recent years. Termination rates also varied with maternal age, gestational age, and maternal race/ethnicity.

This systematic review presents the largest synthesis of United States data on termination rates following a prenatal diagnosis of Down syndrome. Evidence suggests that termination rates are lower than noted in a previous review that was based on less contemporary studies and had an international focus. Heterogeneity across studies suggests that a summary termination rate may not be applicable to the entire US population.

To explain why these numbers matter: In other words, there are thousands of babies with Down syndrome who are aborted every year based upon prenatal diagnoses. And there are thousands who aren’t. As I wrote when I first learned the complexities of this data (90% of Babies with Down syndrome Aborted, Really?):

The reason I’m drawing attention to the fact that so many children with Down syndrome are not aborted is that I want women who opt out of prenatal testing or who choose to continue a pregnancy with a prenatal diagnosis or who give birth unexpectedly to a child with Down syndrome–I want these women to know that they are not alone. Thousands of other parents are in your shoes. Thousands of other families have made similar choices. And hundreds of thousands of individuals can testify to the goodness and purpose in the lives of their friends and family members with Down syndrome.

Ross Douthat, Bristol Palin and countless others are certainly right when they decry the number of babies with Down syndrome who are aborted every year as a result of prenatal testing. And Douthat offers a good and important analysis of the grave problems with human hubris in thinking that we should try to engineer human beings according to our ideals of achievement, mastery, and success. But the data demonstrates that many families are still choosing life for babies with Down syndrome. Providing accurate numbers when women with a prenatal diagnosis face the decision about whether to terminate might just save some lives.

I’m currently working on an ebook with Patheos about prenatal testing that will come out this fall.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. A Nielsen says:

    A) The issue is not just prenatal testing but also when an abortion is legal and/or moral permissible. How late in the pregnancy and for what reasons?
    When you write your piece on prenatal testing, check out the new Danish research where they can predict an unborn child with down and other genetic or inherited faults with a simple blood test of the mother after 8 weeks of pregnancy. Today it is after 12 weeks and most 100% sure tests have to be a blood test of the fetus with the danger of provoking an abortion.
    B) One thing is idealistically too want to stop all abortions and another if you were in government and your population was way over the limit of what the country can feed carry etc. Were was the right line in the sand. Would you allow the day after pill or do you also consider that immoral.
    (The Catholic church advocates for a ban on contraception! With the result that AIDS spreads and children suffer. I personally would not want to be born if my parents did not want me. So were in this discussion lays the child’s perspective?)
    (Here comes to mind that Moses permitted divorce! He surely knew it was wrong!)
    I can agree that strictly it is immoral but we are humans and it will never happen this side Jesus return that people will act only according to moral considerations, and stand up to the consequences of their actions.
    Just consider the fact that rape still in this day and age happens in every country in the world, you would have thought that we by now had ended something that barbaric!

    Greenhouse gas is only a problem and only exists because there is to many people on the planet.

    • I agree with you on the issue of contraception and the Catholic Church. This is generally considered an obsolete law by most Catholics I know with the exception of maybe the pope! It has caused more harm than good. The issue of Greenhouse gases though I am sure is the result of pollution rather than overpopulation. If governments like China were more committed to dealing with their power stations than controlling their population they wouldn’t now find themselves with too many old people and not enough young and orphanages filled with poor little innocent children and no doubt devastated parents. Sexual deviance is an issue I doubt we will ever address since we cannot control how parents raise their children. More information and councelling needs to be given to women before and after the test so they can make a truly informed choice and not just be panicked into having an abortion.

  2. Mike B Sullivan says:

    The Danish expereince is that national voluntary screening programmes for Down syndrome greatyl reduces birth numbers through seelctive abortion. “The introduction of a combined risk assessment during the first trimester at a national level in Denmark halved the number of infants born with Down’s syndrome.”

    If you read the report in detail, you will see that the abortion rate before their new screening policy was around 50%, and that increased to 75% after the “improvements”. Subsequent reports say that the abortion rate is increasing by 3% per year. These are pregancies that would have gone to full term, not jsut those with a psotive diagnosis.

    The British Medical Journal report can be found here http://www.bmj.com/content/337/bmj.a2547.full

  3. Once Materni T21 replaces amnio-centesis as the pre-natal test of choice, as the disability community is predicting, the entire game will be changed, as this non-invasive maternal blood test is 99% accurate and presents no threat to the unborn baby.
    The good news is, moms will have more time to inform themselves as to the true nature of life with Down syndrome, and thanks to books like “A Good and Perfect Gift” the positive side of life with Down syndrome has been fairly represented. The bad news is, far too few medial professionals have chosen to avail themselves of such information, and they are the patient’s first line of communication. Physicians could start by ordering their free copy of “Understanding a Down Syndrome Diagnosis” a bilingual full color booklet on Down syndrome from Lettercase. http://lettercase.org/
    Let us hope that medical professionals give women the information they require when they are faced with a diagnosis of Down syndrome.

    • Amy Julia Becker says:

      Leticia, thank you for your wise words about the medical establishment and for your kind words about A Good and Perfect Gift. Let me also use this section to mention your book–A Special Mother is Born. And of course there are more that demonstrate the joys and struggles of life with children with various disabilities.

  4. Tim says:

    Nice thought-provoking going on here, AJ. Do you think the percentage of those who test and then abort is a function of those choosing to test possibly being – as a population generally, not for each individual – more likely to also choose abortion if the test shows a genetic abnormality? I don’t know if that is a population characteristic or not, but thought you could shed some light on it.

    Thanks,
    Tim

    • Amy Julia Becker says:

      Tim, my hunch, though it is not backed up by data (and I’ve looked for the data but I don’t think it exists), is that women “self-select” out of prenatal diagnosis when they know they wouldn’t abort and don’t feel the need for the information. Plenty of women go through with testing and don’t abort, but I also know many women who say they “had” to get prenatal testing, which is to say, they knew they wanted the option of abortion given a prenatal diagnosis. I’m going to run a post in a few weeks on the demographics of Down syndrome which demonstrates the cultural impact of these types of decisions. The abortion rate is much higher in the Northeast, for instance, than the Midwest. Amy Julia

  5. Mark Leach says:

    A very good post, Amy Julia, that helps in bringing accuracy to the discussion on prenatal testing about Down syndrome. The further step(s) that I would add is that it remains accurate to say that most women receiving a Down syndrome prenatal diagnosis terminate their pregnancies, and the studies that report on this decision reveal that a significant percentage of those decisions are not informed decisions. Decisions are made based on a misunderstanding of the test results, a misunderstanding of what Down syndrome means for our children growing up today, and a lack of support and information being provided to expectant mothers weighing their decision. Leticia helpfully refers to the needed resources and actions.

    Considering the significance of a woman’s decision to abort, similarly, shouldn’t all due care be expended to ensure it is a decision that is informed and comports with the woman’s values? And, yet, of course, that is not happening nor have medical organizations or testing laboratories committed to ensuring the necessary training and resources are available for the responsible administration of prenatal testing. As Michael rightly cautions, unfortunately into this inadequate level of care comes governmental programs requiring the offering of prenatal testing and subsidizing its costs, only excerbating these systematic deficiencies and rightly raising the specter of modern-day eugenics, as Mr. Douthat notes in his column.

  6. Mike B Sullivan says:

    In New Zealand we have just seen a positive refocus from the National Screening Unit away from the routine offering of screening for Down syndrome to all pregnant women to simply advising them of the availability of screening. This was a result of advocacy from the Down syndrome community and you can see SavingDowns press release on this development here http://issuu.com/savingdowns/docs/savingdowns_press_release_30_may_2012

    We are also seeing very encouraging signs from our media in New Zealand – this was an editorial in our largest newspaper saying “Down syndrome in itself is not a good enough reason to terminate a pregnancy.” see http://www.nzherald.co.nz/opinion/news/article.cfm?c_id=466&objectid=10810442

    As a community we need to be alert to the eugenic agenda though. The developers of the new blood test pull no punches. This from Philippos Patsalis of the Institute of Neurology and Genetics in Nicosia, who developed the new test:

    “He said the cheaper and quicker method of blood sampling rather than collecting fluid from the womb will encourage more couples to take the test and therefore slowly eradicate the disease.” see http://phys.org/news/2011-03-syndrome-breakthrough-horizon.html

    So there is no question about the agenda of birth preventation of those with Down syndrome, wherever you sit on the “informed choice” debate. That is how our community is being targeted.

    • Amy Julia Becker says:

      Mike, Thanks for your comments and links. European states have advocated formally for the eradication of people with DS, and the recent health care legislation in the US assumes that children with DS are unwanted when it calls prenatal testing “preventative care.” Thank you for your work on behalf of our children!

  7. Lin says:

    Do you religious types really feel that ignorance is bliss, that we should deny knowledge? This is kind of insane. It is called survival of the fittest. In effect this is what parents are doing when they choose to abort a a baby with such genetic abnormalities. We are animals and we have the brains to do so, so this is smart. Do you even known what causes down syndrome? I only want to produce productive healthy children – that is not a crime. It is what more should be doing and healthcare would not be such an issue. Who wants to have their children go through such pain and heartache? That is cruel. Opting out of being informed is never a good thing – it is weakness.

    • Tim says:

      Interesting philosophy, Lin. If someone considers you to be worthless, should they have the right to end your life?

      Tim

    • Lauren says:

      Lin… Do YOU know what causes Down syndrome? And do you believe that those diagnosed with Down syndrome are all unhealthy and all unproductive, because I assure you – that is far from the truth.

      There is much more to individuals with Down syndrome than “pain and heartache”. Your implications lead me to believe you are both ignorant and uneducated.

    • Olivia says:

      I agree. If I ever find myself to be pregnant, it will not be announced to ANYONE (except my mother and my partner, of course) until I have had genetic testing done. Any chromosomal abnormalities and I will abort. People who want mentally disabled children are welcome to have them. Don’t try to force other people to do the same however.

      • Tim says:

        Why stop at aborting your own disabled child? We can do better than that and kill people we think are problematic in so many categories. After all, there’s no categorical difference between the two practices, merely a quantitative one.

        • Stacy Genobles says:

          Yeah there is a difference. People have abortions for a variety of reasons, including the fact that the mother’s life may be in danger. That’s primarily why I did not give birth. The fetus was dying inside of me, and my own health was precarious. Yes, the fetus was already diagnosed with Down Syndrome at the time. No, it wasn’t his only problem. Yes it was one contributing factor to my abortion.
          Still want to judge people who abort special needs kids as cruel murderers?

      • Moe says:

        There is no prenatal test for Autism. So if you ever find yourself pregnant, there is a 1 in 110 chance that your child will have autism. Autism can range from very mild to very severe. Some of our greatest thinkers, Einstein included, were thought to have had Autism. And some people with Autism need around the clock care. But under your theory, we should figure out a test and abort them all too! I hope your future children don’t have any other health problems that you weren’t able to screen out ahead of time, such as childhood cancer, or premature birth, which is also on the rise. No one is trying to force anyone to raise a child with a disability but children have challenges that come in all shapes and sizes. You don’t get to choose your child’s challenges in life.

      • I trust my God and I gladly hold and cherish my Down syndrome child every day. God help your “typical” children if this is how cold your heart is. And I hope your “typical” child does not become not so typical one day. Many children are born with no abnormalities until some unforeseen thing happens. You think my child is “worthless” check out how amazing she is at my website http://www.3of21.com. She may not perform heart surgery one day, but she may write the most incredible words on paper or create the most beautiful painting or sculptures to sit in art galleries. Our worth is not measured by our IQ level. You my dear have shown us that.

    • Heidi says:

      You know nothing. I have a brother with Down syndrome, and I’ve worked with people with disabilities for as long as I can remember. It’s my personal life, and my professional life. People with disabilities absolutely live full, joyful lives. You are a tiny ant on this huge planet. Who made you judge of the universe? You’re lucky that we don’t consider assholes “genetically abnormal”, buddy.

    • Mary says:

      I’ve seen families who had to care for children with Down Syndrome and have seen the children’s quality of life, and yeah, some might have a mild version, while others are in diapers and the metal capacity of a one year old for all of their lives. It’s not something I would ever want a child/person to live with. If I knew I’d have a child with DS, I’d abort it. If I die, who’s going to take care of him/her? Able bodied, able minds adults find it hard to make it in this life, so why give life to someone who can never survive if it weren’t for nurses, parents and and friends taking care of them. It’s not any kind of way to live. I wouldn’t wish it on anyone, especially a child of mine. I guess it all comes down to how we each see life. There is no wrong or right choice, it’s a personal choice.

    • cornelia says:

      Wow, is this for real? in 2013?

  8. We can tell if a fetus has Down’s Syndrome and maybe some other syndromes, so we can choose to abort. But my question to the parents who choose this route is what they do if they go on to have a child who is seemingly healthy and ‘normal’ but they discover at 2 or 3 that they have Autism. What happens if they contract a serious form of meningitis and are left utterly dependent on their parents for life. What if they have a serious accident and life as they knew it means dependence on others (including the state) for life. Should we end their lives? The point is life is never perfect, people are not perfect and there are no guarantees. Even when we have a healthy ‘normal’ child we have no way of knowing for sure how they will turn out. What if your perfect, intelligent child grows up to rebel against everything you want for them. They waste an expensive education and stable loving home to become a drug addict, drug dealer, serial killer, bank robber or terrorist! It happens and we can’t control everything in life. Open your minds and hearts to people who are different. You might be amazed at how much you learn.

  9. Anon says:

    Both sides of the Down Syndrome abortion debate have valid points, if anyone can’t see that they’re bias and debating will not lead to anything other than an argument. It’s a choice. Whatever decision one makes regarding their unborn child, is the right choice. Why can’t people take their strong opinions and utilize them in their own lives, and let others do the same. I personally, wouldn’t abort. If you would… Well that’s fine …. I’m sure you have reasons that I couldn’t possibly understand because well…. I’m not you. Respect other people’s decision and don’t think for a second that the people who do abort haven’t thought it out or don’t care about their children. Not everyone has money to take care of a special needs child, and very few people are willing to adopt.

    • Tim says:

      Anon, I’m sure that people may think they are making the right choice when deciding whether to bear a child or abort the child, but thinking you’ve made the right choice is not the same as actually making the right choice.
      Unless, of course, everything is right as long as someone is sincere. if that’s the case, then there really isn’t such a thing as right and wrong, just personal opinions and preferences. And in that case, then no one actually does the right thing ever. And continuing in that vein, then we should all feel free to kill or nurture whoever we want, inside or outside the womb, because it just comes down to what one thinks is right.
      Right?
      Blessings,
      Tim

      • Anon says:

        Hi Tim. In my opinion, in this particular situation, yes it is all about what one believes is right or wrong. It’s such a diverse topic and I don’t believe anyone can say that their choice can be the right one for every human being regardless of circumstance. I believe only the person who lives with the decision they choose can 100% make the right one in a situation like this.
        Although, I can see your point
        Anon

  10. The Jones says:

    I’m not so sure about this information. Especially the 3% number. I think it’s a little misleading. And “testing for Down Syndrome” does not only mean “amniocentesis.” While you’re right that the data is not simple, I don’t think it’s as encouraging as you’re communicating.

    For instance, if you go to http://www.downsyndrometest.org, you can download a pamphlet that says explains the types of tests for Down Syndrome. In the pamphlet, you can read about screening tests and diagnostic tests. Amniocentesis is only one of two types of diagnostic tests, and diagnostic tests are normally only done after a risk-free screening test. The pamphlet says:

    “There are no risks of miscarriage associated with screening tests. Screening tests cannot tell you for sure if your baby has Down syndrome, but if a screening test shows that chances are high, your doctor or medical advisers may offer a “diagnostic” test.

    Diagnostic tests – There are two diagnostic tests that can tell you with almost 100% accuracy if your baby will have Down syndrome. The amniocentesis test (amnio for short) is usually performed after the 15th week of pregnancy. The Chorionic Villus Sampling (CVS for short) is usually performed between the 10th and 12th week of pregnancy. Both tests have a small but real risk of causing miscarriage.”

    And if the screening tests are routine (I think they are, but I’m not so sure), then the numbers are probably much higher than 90% of 2-3%. I’ve taken a heightened interest in this issue as I have Cystic Fibrosis and increased abortions are also being seen in our population, too. However, I’ll be looking forward to the book.

  11. Robyne Ferri DLP says:

    I Was on the bus yesterday afternoon with a group of down syndrome young adults, one had a book of knock knock jokes she was reading out and they were all killing themselves laughing! …I couldn’t help but smile with them & love their innocence & joyful hearts. How blessed we are as a society to be reminded about innocence & simplicity by people like these.


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