Prenatal Screening, Down Syndrome, and Being Pro-Choice


I’ve always held myself out to be pro-choice – that is, I stand behind a woman’s right to have autonomous control over her body and to choose her own reproductive destiny, including safe, legal abortion if she so chooses. How does this position reconcile, however, with the desire to raise awareness about Down syndrome, especially as it pertains to prenatal screenings? Does finding the termination rate in prenatally diagnosed cases of Down syndrome (over 90%) appalling, and having a wish to better educate people about the realities of Down syndrome with the hope of impacting this termination rate make one “selectively pro-choice,” wishy-washy in one’s views, or a hypocrite?

I would argue that no, it does not.

Let’s look at prenatal screenings:

Although amniocentesis has been performed in various manners for over 100 years, it did not become widespread as a method of detecting fetal genetic conditions until the 1980s. The procedure was developed and improved upon by numerous doctors and scientists over the decades as an experimental tool to better understand pregnancy and the effects of certain environmental factors on fetuses. Its development was never demanded by the public; in fact, no form of prenatal screening has ever been demanded by the public until it entered a phase of being marketed to the public. If amniocentesis was being occasionally and selectively performed a century ago, that was certainly before “informed consent,” and it’s safe to assume that women who underwent amniocentesis in the early years and decades probably weren’t presented with a choice about it.

In the 1980s amnio gained widespread popularity as a tool for screening for birth defects – most notably Down syndrome – in older pregnant women (those over 35). Subsequently, more screening methods were developed that were less invasive than amniocentesis (and therefore didn’t carry the risk of fetal harm that amnio carries), but also less accurate. These blood screenings (most notably, AFP, triple screen, quad screen, and first trimester screening) were being offered to all pregnant women, of all ages, by the mid-1990s (although often, as I can attest to by my own experience, they’re not presented as optional, they’re presented as, “Okay, at your next appointment, we’ll be doing your AFP screening.” In truth, this is the case with just about all prenatal procedures – as well as hospital procedures administered during labor and delivery: “Next month we’ll do your glucose tolerance testing,” or “Now we’ll place your IV and get you situated with the fetal monitor,” effectively taking the element of choice out of the picture and making these non-compulsory procedures seem mandatory.) The biggest drawback of the non-invasive blood and ultrasound screenings is the high rate of false-positive results, which usually lead to the more invasive (and risky) amniocentesis anyway.

It should not escape anyone’s attention that there is a reason prenatal screenings are carried out as early in pregnancy as possible: to allow for easier termination, period. If these screenings were undertaken purely with the noble intent of preparing parents for possible outcomes, they could realistically be carried out at 25 or 30 weeks’ gestation, still allowing for plenty of time for the parents to “prepare” themselves.

It would be commendable if prenatal screenings were carried out compassionately, intending only to provide information and an opportunity for preparedness. However, the truth is that prenatal screenings are tools meant to screen out birth defects – meaning, there is a clear bias of these screenings and tests in favor of termination. Stories abound of mothers being given a prenatal diagnosis of Down syndrome and being told, “This can be taken care of quickly and easily. We can schedule your termination this week.” (And using possessive language such as “your” effectively makes it feel like a personal right that should be exercised.) Even when that’s not exactly what parents are told, they are very often painted a very grim picture of life with Down syndrome and left to conclude for themselves that abortion is the most humane option for the baby, the family, and society.

If I had a dollar for every woman who’s told me, “I wouldn’t terminate under any circumstances, but I would just want to know . . . .” Many, many women genuinely can’t fathom ever considering termination of a pregnancy; and yet, why is the termination rate so alarmingly high in prenatally diagnosed cases of Down syndrome? I would venture to guess that a great many of those same women who don’t believe they would ever consider termination also can’t fathom being faced with a doctor telling them that their child will likely never walk, talk, read, or be toilet trained, and who will forever be a burden and a financial drain on the family and the community. Even in this so-called enlightened age, this is still an all too common description of Down syndrome by medical professionals.

It’s very much a self-fulfilling prophecy that we’ve created and continue to nurture: we as a society hold onto outdated images of people with Down syndrome – odd-looking people ambling around in organized groups, unengaged, unable to communicate, perpetually childlike and dependent. These images frighten us on some level, threaten our innate desire for conformity, and so we continue to exclude them from mainstream education and life, marginalizing them, which prevents them from realizing their true potential. And so they largely remain on the fringes, dismissed, and very likely more dependent than necessary and less able than possible – a monster of our own making. Continuing to treat Down syndrome as a condition that should be terminated prenatally also effectively feeds the attitude that people living with Down syndrome are not worthy of compassion, dignity, or respect – let alone life itself. The best way to keep a class of people down is to continue to oppress and marginalize those people.

The truth is that people born now with Down syndrome on the whole do much better health-wise than ever before thanks to medical advances, and when provided with appropriate community supports, inclusion in every aspect of family life, and educational and employment opportunities, they do better socially and academically than ever before in history. Take any one of these things away, and the impact on quality of life is indisputable.

So the truth is, an honest, up-to-date picture of Down syndrome is not widely provided to parents receiving a prenatal diagnosis – or even to those contemplating prenatal screenings to begin with. Further, because people with Down syndrome – and all varieties of disabilities – are still largely excluded and marginalized, the average person does not have any first-hand knowledge or experience with Down syndrome. They likely have vague stereotypes promulgated by society, coupled with bleak predictions from medical care providers they trust, and that’s it.

No wonder the termination rate for prenatally diagnosed cases of Down syndrome is so high.

Back to the original question: can a person be pro-choice and still wish to change perceptions about Down syndrome in the hopes of impacting the termination rate?

While I believe every woman should have the right to terminate a pregnancy, I also believe that such a potentially profound decision is best made with full information. The truth is, the vast majority of women who terminate because of a prenatal diagnosis of Down syndrome wanted to be pregnant – they wanted a child. Unlike early abortions that occur because the woman, for whatever reason (in most cases, an unplanned pregnancy and a lack of resources to raise a child), does not want to be pregnant or to have a child – any child – women who allow their pregnancies to progress to the point of undergoing prenatal screenings are women who actually do want to have a baby – even if it was unplanned. So isn’t it only right and responsible to provide her with honest, current information about the realities of Down syndrome?

And the truth is, this honest information is not likely to be given by medical professionals (despite the recent enactment of the Prenatally and Postnatally Diagnosed Conditions Awareness Act), because it’s not likely that most medical professionals actually have much knowledge about Down syndrome beyond what’s found in text books. It’s going to take families directly touched by Down syndrome, and people with Down syndrome themselves, speaking out and raising awareness. And it’s going to take society allowing them a voice, and not shutting them down and dismissing what they have to say.

That’s my aim. When I talk about our life with Finn, when I post things about Finn and the impact he’s had on me and our family, I do it to provide a picture from our side of the fence. I remain steadfastly pro-choice, but I’m also pro-information and -education, as should everyone in a compassionate, enlightened, and progressive society strive to be.

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21 Comments on “Prenatal Screening, Down Syndrome, and Being Pro-Choice”

  1. Abbie's Mommy
    December 5, 2011 at 5:00 am #

    I am one of the few you talk about. I am the mom who desperately wanted another child. We tested to be prepared. At 20 weeks gestation, Easter Sunday, we got the call Abbie has Down Syndrome. Termination never entered my mind until the Doctor gave us our “two choices”. Abortion or adoption. I wish I could have got the reaction of the doctor when my fiance all but came across the room laying into the physician that this was our daughter and she would be born and raised absolutely no different than our other children. Since then I have been called a Saint, I have been told I am gifted and special and an angle for raising my child. The more I read about new tests the more I want to scream and cry. Thank you for posting this. I feel like I could have written it myself…although maybe not with such grace. I desperately want to tell people my daughter absolutely has a life worth living and if potential parents aren’t prepared to take whatever child is given to them, that they should not have children. There is no screening for autism no screening to prevent the next Jeffry Daumer, DS should be no different. Thank you again.

  2. Meriah
    December 5, 2011 at 6:32 am #

    Great post. I am fiercely post choice, pro disability and pro information. I had an amnio and despite urgings from the doctors, chose to have Moxie. But really, it was hard. I was so scared and all they did was pound home the “burden for life” piece. As a deaf girl with TBI and lots of scars, I KNOW what it’s ilike to be mercilessly teased – and more. I didn’t know if I’d want to bring a child into the world, knowing she would more than likely face what I have, in the course of her life

    What I want is a balanced plate of info to be presented to those choosing; I also want people to believe me when I talk about my experiences with Mixie and not just think I have some other motive in sharing it all

    Sorry for the typos – commenting from the phone…

  3. Danielsmum
    December 5, 2011 at 7:04 am #

    Well written and very thoughtfully put together replace DS with Spina Bifida and the story is the same. That’s why we have combined our efforts to challenge the system currently in place in New Zealand see savingdowns.com Thankyou for raising awareness and being another amazing mum.

  4. stemcl
    December 5, 2011 at 11:59 pm #

    Great piece however I disagree about your “prochoice” stance. The developing baby is not part of the mother’s body. And as someone who has had difficulty conceiving and carrying a baby to term, I know from experience that women are not always able to choose their reproductive destiny either. My two babies who did survive to term were not “planned”, but were wanted. Sadly one died. We also adopted two children with Down syndrome, so yes adoption should be an option for those who don’t want to keep a baby with Down syndrome or any other disability. The “right to choose abortion” is really “the right to end my baby’s life” – chances are even initially unwanted, unplanned babies will eventually be wanted and loved, if not by their own birth parents then by adoptive parents.

  5. Crittle
    December 6, 2011 at 12:15 am #

    Awesome job, Lisa. I hope that many, many people read this.

  6. Mike Sullivan
    December 6, 2011 at 2:32 am #

    An interesting article thanks, albeit paradoxical. “Reproductive choice” is the doorway to eugenics – you get to choose the type of baby you want.

    I was confused at the end of your article, are you defending genetic screening provided that good information is provided, and that aborting unborn children diagnosed with Down syndrome is OK, provided the choice is “informed”?

    Or are you suggesting that screening is used “only to provide information and an opportunity for preparedness”, in which case you deny the use of the technology to enable a women her “reproductive choice”?

    The challange with “reproductive choice” is that the most vunerable are the first to suffer from someone elses choice. The most vunerable in society are the unborn diagnosed with a so-called disability. Discriminated against before they are even born.

    A civilised society protects it’s most vunerable, exercising human responsibilty towards others above their own selfish choices.

    • Lisa
      December 6, 2011 at 4:23 am #

      I think pro-choice vs. pro-life is a whole other discussion. The fact is, abortion is here to stay. Women have been having abortions for hundreds, probably thousands of years, and they’re going to keep having them whether it’s legal or not. Being pro-choice certainly doesn’t mean that I think it’s okay to promote abortion – I think terminating a pregnancy should never be taken lightly. I think it’s a necessary evil that’s here to stay. Do I think other options should be counseled? Absolutely.

      Eugenics by definition is “a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed.” I don’t think all types of abortion can be said to fall under eugenics – certainly the young girl who finds herself unexpectedly pregnant and chooses to abort is not doing so out of a desire to improve the race, nor is the woman who finds herself pregnant after being raped; she’s most likely doing it out of desperation.

      Aborting for Down syndrome is, however, a form of eugenics. It’s an attempt to erradicate a certain class of people from the race because they are seen as inferior, burdensome mistakes. And I truly believe that the vast majority of women who abort for Down syndrome do so based on misinformation. That’s the point I’m trying to make. I think if accurate, compassionate, well-rounded information were given to women who learn they are carrying a fetus with Down syndrome, far less would choose termination than actually do. And I think it’s terrible that doctors actually suggest, encourage, and often pressure their patients in this position to abort. That needs to stop.

      Prenatal screening isn’t going to go away either. Once the technology is there, there’s no going back, and the technology is going to continue to improve, making screenings easier and cheaper and less invasive and more accurate – there’s just no getting around it. Am I defending prenatal screenings? I’m just resigned to the reality of them. What I’m defending is providing accurate information so that people can make truly informed choices.

      If a woman received accurate, well-rounded information about Down syndrome and still chose to abort, I would be sad – of course I would. But I would defend her right to do so.

      Thanks for the comment, Mike.

      • Mike Sullivan
        December 6, 2011 at 5:40 am #

        I agree that providing accurate information is better than providing negative mis-information. But as you say, this is a form of eugenics, and it’s a dangerous science.

        Routine early screening to identify Down syndrome presumes that their is something wrong with the condition that should be avoided, otherwise, as you rightly point out, why have early screening? That is where the great danger lies.

        Better information may reduce the impact, and I would welcome that, but I would suggest that we will see a rapid decline in their numbers, such is human nature and the confusion around the value of human diversity. If society defends the use of screening to faciltate disability selective abortion, then we will continue to see the consequences of upholding that choice.

        Thanks for being a voice for those with Down syndrome, the more the merrier.

  7. Maggie
    December 6, 2011 at 5:43 am #

    Recently I’ve been reading, on several disparate subjects, about the medical professionals counseling parents based on false information — or, to be charitable about it, information that is fifty years out of date. Add to this recent studies suggesting that people who are very bright and very educated are more likely to believe that what they ‘know’ is incontrovertibly right than people who are less well-educated, and you have a complete setup. Doctors believe they know more about it than new parents, and the new parents believe that the doctors are experts.

    But whether you’re talking about Downs or other trisomies, or intersex conditions, or conditions on the autism spectrum, there is in fact NO evidence that these are “defects.” There may even be evidence that these less-usual conditions represent evolutionary successes in some environments.

    How do we get doctors and other so-called experts to stick to what they actually have expertise about, and leave the prognostication of doom and gloom out of their advice?

    • Lisa
      December 6, 2011 at 5:57 am #

      Good question, Maggie. I think the Prenatally and Postnatally Diagnosed Conditions Act at least aims in this direction, but I think it’s probably not been very effective, and have no idea how or if it’s actually being implemented.

  8. Alison
    December 6, 2011 at 11:40 am #

    I really enjoyed this post. This is the first time I’ve read your blog, but I’ll put it on my list. I, too, am fervently in favor of women’s reproductive rights, and I’m also incredibly wary of the way prenatal testing is done and the results. I’m doing a research project on this very subject right now. Thanks for sharing your thoughts, and I’m going to keep an eye on the responses you get, because I think those are significant, too.

  9. Amy Heyde
    December 8, 2011 at 11:21 am #

    I am for prenatal screening and testing as I think some people simply need to know sooner than when they deliver about problems. I am against allowing women to terminate a pregnancy at 16 weeks due to an extra chromosome or whatever the amnio might show. Ending the life of an adult with cancer or ALS is not permitted in our society…why is it ok to take the life of a child due to a medical condition? I am not steadfast to a pro life or choice opinion…Im extremely against abortion for myself, but feel uncomfortable thinking myself or anyone else should make a decision about someone else having a child. But to end a child’s life based on a diagnosis when like you said…it would not have happened otherwise just to me does not seem right.

  10. Brad
    December 10, 2011 at 12:47 am #

    I am pro-informed-choice and look forward to the day woman and couples broadly have that opportunity. The issue with “choice” today is that it is decision making nudged by biases and inaccuracy. Compare two sets of data:
    1)
    – Well over 90% of parents and siblings of a child with DS are very happy they have that person in their life and find them value added to the family.
    – The divorce rate of parents with a child with DS is lower than other parents. Study after study show the positive impact of having a child with DS.
    – Because of abortion rates, most parents don’t recieve the diagnosis until after birth (and thus did not make the choice to have the child they are so happy to have).

    2) 92% of people who find out their fetus has DS abort.

    These two sets of facts point very clearly at an information gap that is limiting free and informed choice from potential parents. Choice is having reliable information with which to make my decision – plenty of studies and incidental stories to back the strong points the data demonstrates above – today the bias of the medical community hampers free choice.

    Great article!

  11. Grace Robbins
    December 11, 2011 at 3:32 am #

    I love this information and agree on so many levels, would love to hear what you think of my right up on testing and our son Nolan….

    http://www.dreamingbigx3.blogspot.com

  12. Mike Sullivan
    December 11, 2011 at 4:57 am #

    There is also an interesting debate going on at http://www.stuff.co.nz/auckland/blogs/an-auckland-minute/6100243/A-womans-right-to-choose

    • Lisa
      December 11, 2011 at 3:49 pm #

      Wow. That hurts. I don’t consider myself “pro-life” – or rather, I think that being “pro-choice” certainly includes being in favor of life – but I have to disagree with his assertion that terminations for Down syndrome don’t amount to eugenics. Look at the lengths the medical establishment has gone to to develop better, cheaper, more accurate tests, specifically aimed at Down syndrome! – it cannot be denied that we as a society are in fact trying to eliminate Down syndrome. This quote stood out to me: “There’s no suggestion of coercion or persuasion or encouragement one way or another.” That’s complete bullshit. Doctors routinely suggest, encourage, and often pressure their patients who receive a prenatal diagnosis of Ds to terminate. It seems to me that the majority of women who terminate for Down syndrome probably feel that they really have no choice but to do so because of the misinformation and pressure they receive.

  13. Mike Sullivan
    December 11, 2011 at 7:50 pm #

    New Zealand based Savingdowns have issued this press release in response:

  14. stemcl
    December 13, 2011 at 5:02 am #

    Lisa, you said, “The fact is, abortion is here to stay. Women have been having abortions for hundreds, probably thousands of years, and they’re going to keep having them whether it’s legal or not.”
    By that logic we would also decriminalise or legalise a whole lot of other illegal behaviours that infringe on other people’s rights, stealing, assault, rape, murder etc. Abortion deprives an innocent human being of their right to life without which all other rights are meaningless.

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