Should abortion be an automatic option with a prenatal diagnosis of Down syndrome?

I was headed to a wedding out of town last week, so I asked my online friend Stephanie Meredith to offer a guest post about resources for women with a prenatal diagnosis of Down syndrome. Stephanie is the author of the booklet created by Lettercase.org, which was prepared with assistance from representatives of  both the American College of Obstetricians and Gynecologists (ACOG) and the National Down Syndrome Society (NDSS) (somewhat strange bedfellows). As a result, the Lettercase booklet is a resource that doctors actually use when offering a prenatal diagnosis of Down syndrome. It has recently become available online for free, and I wanted readers to know about the resource. I didn’t expect any controversy.

But. It turns out there’s a debate within the Down syndrome community about whether or not those of us with children with Down syndrome should allow abortion into the conversation surrounding prenatal diagnosis, and I thought the conversation that ensued via comments was worth capturing in condensed form here:

Mike Sullivan wrote:

If the Down syndrome community wants to be treated as equals, then we need to say that a prenatal diagnosis of Down syndrome is not a valid reason for taking the life of another human being. That is why we shouldn’t endorse resources that mention abortion as an option following a diagnosis. The current status of the law doesn’t mean that we shouldn’t advocate for our community to free from discrimination through birth prevention programmes. This is a social justice issue for our community and we need to oppose eugenics . . .

Of course, if the Lettercase booklet didn’t address the option of abortion, it would not be endorsed by ACOG, and many patients who are considering terminating a pregnancy with a prenatal diagnosis of DS would not see the up-to-date information about Down syndrome provided through the booklet. As Mark Leach commented,

No other resource has received the amount of support and recognition from professional medical societies than the Lettercase booklets, and this is precisely because of what information it shares. Medical providers are the gatekeepers of information about Down syndrome . . . The support of the medical leadership allows medical professionals to then provide these materials to their patients, which is significant given that studies show that otherwise, physicians more often than not do not provide educational materials about Down syndrome with a diagnosis. Indeed, the Lettercase booklets are beautiful and the images and the information that is shared is having a positive impact on both medical providers while also being the kind of information mothers say they want to receive.

Amy Allison agrees:

As the Executive Director of the Down Syndrome Guild of Greater Kansas City I receive phone calls regularly from prenatally diagnosed parents who are in the decision making process. It is not my role to pressure them to continue a pregnancy or to tell them they have only two options (parenting or making an adoption plan) when they in fact have three options. It is my role to provide them accurate and up to date information, offer to match them with a family to learn more and to answer any questions they may have.

She goes on to provide a current story of a doctor who called her looking for exactly this type of information, which, due to Lettercase’s booklet, she was able to provide.

Nancy Iannone, of downsyndromepregnancy.org (another wonderful resource for women facing a prenatal diagnosis and for their friends and families) also offers a personal perspective in which she defends the Lettercase booklet:

By acknowledging the status of that reader where they are (not where someone else may want them to be), and preparing them for the perhaps unforeseen difficulties involved in termination, the reader is both respected and the information provided is much more credible. It is all about that audience – that reader – that patient on the table or in the office.

Many of us have concerns about the future in this new age, about the place for people with Down syndrome, about great question of ethics, morality, discrimination. But as someone who was on that table, and who has talked to so many during that critical time, those patients do not care about these bigger questions. Bringing them to the discussion with that patient – either directly or indirectly – will make us alienate those readers. They are concerned about their futures, their child, their family, their choice – giving accurate information about Down syndrome which is audience-appropriate is a challenge which “Understanding a Down Syndrome Diagnosis” meets both successfully and beautifully.

If the Down syndrome community acknowledges the option of abortion when faced with a prenatal diagnosis of Down syndrome, it becomes able to play a role in counseling women about their options. On the other hand, it may unwittingly play into negative assumptions about Down syndrome as a result. Is abortion of a fetus with Down syndrome is an act of discrimination or a realistic option for women facing a prenatal diagnosis?

Again, I’ll be writing more about these topics in my forthcoming ebook for Patheos Press, What Everyone Should Know About Prenatal Testing.

 

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. Such an interesting post. I don’t think abortion SHOULD be an option, but because it is, I think we do ourselves a disservice as a community if we pretend it’s not the first thing presented to many women. Because we live in a system under which abortion is legal, I think we’re wise to address it in any sort of endorsed literature. Do I think an extra chromosome is worth a life? Not one bit. But I also believe that the new booklet is balanced, and that if anyone comes to a decision after reading it, it will be women considering termination who think, “I CAN raise a child with Down syndrome.”

  2. Heidi Ehle says:

    It is simply a matter of yes, we HAVE to acknowledge that this is happening. There isn’t an option of sticking our heads in the proverbial sand and pretending that it ISN’T. The only option available to combat the abortion of babies with an extra chromosome is to ensure that parents receiving a prenatal diagnosis have ALL the facts, not outdated info, not false abortion rates, not all the negatives. There has to be a balance between the medical community’s responsibility to impart the possible negatives and our responsibility as parents to show the positives as well. Otherwise, critical decisions which are made usually in a rushed time frame are not educated decisions. They’re decisions made out of fear.
    Prenatal testing is NOT the enemy.

    • What false abortion rates? I have only ever seen one. It’s the same one every time. Could you clarify please?

  3. Amy Allison says:

    As a follow up, I heard from the expectant parents I counseled and they are continuing their pregnancy and look forward to getting involved with the DSG. They appreciated the non-directive information provided and being matched to parents who shared first hand accounts of life with Down syndrome. Thank you for continuing to cover this important topic!

  4. Ellen Painter Dollar says:

    Your final question, “Is abortion of a fetus with Down syndrome is an act of discrimination or
    a realistic option for women facing a prenatal diagnosis?” is really quite a different question than the one you raised initially, which is whether those who advocate on behalf of people with Down syndrome should acknowledge abortion as an option and make that choice part of the prenatal diagnosis conversation. It strikes me that someone could answer “yes” to whether abortion is an act of discrimination, but still, for the practical reasons many people have cited (the fact that it IS a choice whether we like it or not, the desire to bring people into a conversation and not alienate them by only talking about particular options, etc.) while also saying “yes” to the question of whether abortion needs to be part of the conversation. I (and many others in the world of genetic disorders and prenatal diagnosis) have some trouble with how genetic counselors sometimes play out their role, but the role they are supposed to play and often do play—the role of the informed advisor—is one that others can play too. And play extremely well if they have a great deal of knowledge about life with a particular genetic anomaly. But anyone outside of the pregnant couple must limit themselves to that role, of informed (and compassionate) advisor, and not cheerleader for certain choices over others.

    To offer an analogy of sorts, this is precisely why many on the pro-choice side of things have such a hard time with crisis pregnancy centers that say they want to serve and help women, yet will not discuss abortion except in the negative. This is a paternalistic attitude that only serves to alienate people who might otherwise be very willing to enter into conversation about their choices, and might even make the choices that their counselors hope they’ll make….on their own.

    • Mrs Dollar, do the abortion clinics really do the opposite? I have spoken to women who were ‘counseled’ there, and they cited that they were told lies about the stages of fetal development, the option of adoption was never raised, and they felt rushed to the abortion decision. To say that Crisis Pregnancy Centers are paternalistic is unfair if you have never been there. I have worked in them, and women invariably leave feeling that they were listened to, their needs were met and they were treated a a human being in crisis. Most women who are walking into abortion facilities feel as though they have no support, are pressured from those who should support them, and jump at the chance to find a better solution to their problems.

      • The last time I looked at Planned Parenthood’s annual report, which was probably two or three years ago, I calculated the ratio of abortions to adoption referrals. I expected it to be skewed, but even I could almost not believe how much: I think it was around 50 or 60 to one. Don’t take my word for it, they actually published this.

        In my experience with the crisis pregnancy center, people there are treated like whole persons; they even have someplace to go for the holidays. While I realize this is only one place and I am only one person, I see the security escort at the abortion clinic drop young women on the sidewalk when it’s over and not be bothered to wait and see that they catch their rides safely and don’t pass out in the meantime (we offered a fold-up chair and some water to one who looked positively ill and weak), and while I have not been inside, it doesn’t speak to me that they are seen as more than a temporary problem. I have added the caveat that this is my personal experience; however, from what I’ve read I think I am unfortunately far from the only one.

        What could be more paternalistic than insinuating to women that the way to be free is to be like the worst of irresponsible men, and to do this by killing their children? That’s what abortion and its defenders do.

    • I guess I will never see how fatal discrimination against a person for something entirely beyond control can be thought of as a legitimate, permissible option in any context (‘can’ and ‘ought to’ obviously being two different things).
      I volunteer for a crisis pregnancy center. It is our firm belief that abortion does not help and serve women, in fact it harms them and their children, and so we cannot help and serve women by being encouraging or neutral toward it. Sure, it only matters if the thing in question is important enough to take a stand over. I think it is vitally important.

  5. Ellen Painter Dollar says:

    And to respond to Mike’s post (Mike and I have a long correspondence of intense but respectful disagreement, so I offer this in such a spirit), I think it is very important to realize that individuals making hard prenatal decisions make those decisions in their hearts and in the context of their unique lives and families. We humans simply do not (and I think, often cannot) make intimate procreative decisions while being primarily concerned with what those decisions mean in a cultural, rather than personal, context. While cumulative decisions can ultimately usher in cultural change and movements, it is supremely unfair to label the hard decisions that individual couples make as “eugenics.” The history of eugenics is one we do need to heed in this new world of genetic science, but we also must keep in mind that the term “eugenics” has historically referred to state-sponsored movements, not private decisions. If telling someone they are practicing eugenics by making a difficult prenatal choice isn’t alienating, I don’t know what is. I have been called a murderer and a eugenicist for making the procreative decisions I’ve made (and for focusing my work on conversation around such hard decisions, rather than prescribing the “right” decisions to make). And I can tell you that I would never open up my most intimate decisions to someone who would dare to call me such things. If we want people to really think through these decisions and talk to informed people, we can’t label them with frightening and inaccurate pejoratives.

    • Ellen Painter Dollar says:

      That is, I would never HAVE opened up my most intimate decisions to someone who would label me a “eugenicist” when I was making those decisions. Now, I share my decisions far and wide, knowing that some will call me all sorts of things, as a way to enable conversation around these difficult topics.

      • Ellen, I experienced a prenatal diagnosis of Spina bifida late in pregnancy at around 29 weeks. Neither doctor I was under suggested an abortion and I just assumed at the time that abortion wasn’t an option because I was so far on but have since discovered that even in new Zealand babies can and do get aborted as late as that and later because of foetal abnormality.
        My baby only lived a week but I felt that the fact that she could have legally been aborted devalued her life.
        I attended a eugenics seminar on the weekend and one of the speakers talking about the history of eugenics did say that eugenics IS made up of lots of individual acts. Granted the people performing or agreeing to these acts may not have been aware of the wider picture but I can assure you that policy makers are well aware when they extend antenatal screening for Down syndrome to every pregnant women that the number of babies with Down syndrome who are carried to birth will decrease. “Birth prevention” is a euphemism for “termination of pregnancy” which is a euphemism for what actually happens – an innocent human being is deliberately killed in the womb.
        “Should abortion be an automatic option with a prenatal diagnosis of Down syndrome?” No. Should organisations that purport to support children and adults with Down syndrome be “neutral” when it comes to the right to life of people with Down syndrome? What happens when infanticide is offered instead of treatment, or euthanasia for an older child? The chances are these two “options” will one day become available. Will we then be putting out booklets that say a lethal injection or denial of food and water is an equivalent alternative to heart surgery? Death is certainly a cheaper, more “cost effective” option, which is one of the reasons it is deemed desirable to screen out and abort babies with Down syndrome.

        • I agree, and I don’t think it’s a matter of tolerating something merely less-than-ideal in this literature to get it to a wider audience. The ideas are not compatible, period. Acknowledging that it happens is one thing. Presenting it as an acceptible option is another thing entirely.

    • Mike Sullivan is from New Zealand where the Health Ministry conducts regular prenatal testing as part of prenatal care. It is a state sponsored program. In fact, we are about to sponsor a similar program under the Affordable Care Act.
      http://www.ncregister.com/daily-news/is-the-hhs-taking-aim-at-babies-with-down-syndrome/
      The T4 Program of the Nazis began as a private decision of German parents to commit their handicapped or mentally ill children to institutions where German doctors sent them to the first gas chambers used in the Holocaust.
      The state often uses women who think they are making personal decisions, but have really been influenced by subtle and unseen forces; the suppression of information, emphasis on the negative effects of abortions on women, and exaggeration of the difficulties of living with a certain anomaly. That is why we in the Down syndrome movement are doing our best to show the positive side of the lives of those with Down syndrome, to counteract the old negative stereotypes and provide the right information to parents faced with a prenatal diagnosis.
      Dr Brian Skokto published a survey in the American Journal of Medical Genetics which states that 99% of parents are happy with their children with Down syndrome and the children, now adults, are just as satisfied. How do we then explain the overwhelming rate of abortion (75-90%) if this is true?
      Its because women are not given this information by their genetic counselors or their OBs. That is the case of the women who were discussing their pregnancies with me for my book “A Special Mother is Born”. They felt bullied, not informed by their doctors who told them that their children with Down syndrome would never talk, tie their shoes or go to high school. Of course we know that this is outdated information, yet it is commonly given to women who deserve better. Women deserve the facts and deserve to be listened to not lectured by paternalistic health practitioners who tell them that having a child with Down syndrome will end their marriage.
      And it should be mentioned that if parents still feel that they cannot raise a child with Down Syndrome Adoption Network has a waiting list of hundreds of parents waiting to adopt a child with Down syndrome. http://dsagc.com/programs_adoption.asp

      • Ellen Painter Dollar says:

        It is absolutely vital that we advocate against state-sponsored programs that intend to pressure parents to make particular decisions after a prenatal diagnosis, just as it is absolutely vital that we advocate for patients to receive comprehensive, unbiased information from their medical providers after receiving a prenatal diagnosis. Systemic, institutionalized, and government-sponsored efforts to end the births of children with specific types of genetic anomalies deserve the term “eugenics.” However, I understood this post to be more about what advocates and families with children with Down syndrome should and should not discuss when working with individual couples facing an unexpected prenatal diagnosis. In such cases, it is dishonest to fail to talk about abortion as a legal option that people are allowed to consider and choose. To throw the term “eugenics” around when we’re talking about individuals’ decisions is inaccurate, alienating, and problematic on many levels.

        • No it is not. Eugenics is something that has existed apart from overt state sponsorship, does now, and will again. A million individual decisions, as I said, add up. It seems you are trying to put it into a neat, sanitized compartment to protect yourself from the knowledge that average people could become willing accomplices when they think they are making their own decisions.
          I’m sorry if it seems like I am being mean to you. But is it cruel to cauterize a wound to stop the bleeding? It has never been my impression that running from difficult truths actually helps people.

    • Okay, so it is hard…what of it? I’m not following. Was somebody promising a bed of roses for doing the right thing?
      Nobody likes to think that they could be a part or a pawn in such a scheme, but a million individual decisions can add up to a social calamity. And people don’t necessarily know how pervasive the messages are or how they are affected by them. Eugenics has been perpetrated by the ruthless state at times, but it’s far more insidious and dangerous when injected into the conversation by nice, educated fellows behind desks at universities, or nice, educated fellows wearing lab coats and stethoscopes — people who are sympathetic, or at least not threatening in any obvious way. That doesn’t make it not eugenics (why can’t we, gently but uncompromisingly, call things what they are? Truth hurts sometimes, it’s still truth, and not the fault of the speaker if the hearer is reluctant to accept it). It can’t last long if it’s entirely a top-down, state-imposed thing; people recognize that for what it is. We have to learn to process it when it comes to us not in boots, but over a cup of coffee or glass of wine.

  6. Never mind the abortion issue. Why do they even test for Down’s syndrome in the first place?

    • This was considered the ‘cure’ for Down syndrome since the sixties when it was developed. Because of this research to cure the effects of Down syndrome has lagged way behind other diseases, as parents were told that Down syndrome was no longer an issue. What other disease is considered cured by killing the patient. The French geneticist who discovered trisomy 21, making prenatal diagnosis possible, Dr Jerome Lejeune, was very saddened that his discovery by which he wanted to treat Down syndrome in utero, was used as a search and destroy method. Dr Lejeune said. “Again
      and again we see this absolute misconception of trying o defeat a disease by
      eliminating the patient! It’s ridiculous to stand beside a patient and solemnly
      say, “Who is the upstart who refused to be cured? How dare he resist our art?
      Let’s get rid of him!” Medicine becomes mad science when it attacks the patient
      instead of fighting the disease. We must always be on the patient’s side,
      Always.”

    • I can see how it would be useful to help prepare, and to help further beneficial research. If only those were the sole reasons, though. I’m afraid it’s not possible to “nevermind the abortion issue” as they are, at least at this moment in history, inextricably connected. :)


CLOSE | X

HIDE | X