What are national advocacy organizations doing about the high termination rate for Down syndrome?

Hennessy ResponseMonday, Matthew Hennessy wrote about my posts covering the reasons a pamphlet was created when the identified resource had already been established. But his critique is off target.

To recap: recent posts here have analyzed the stated reasons for the creation of a pamphlet. The pamphlet was created by the Global Down Syndrome Foundation (GDSF), with which the National Down Syndrome Congress partnered. This despite years, and much time, effort, and funding (notably from the Kennedy Foundation) having been expended to identify the resource to be given expectant mothers when receiving a prenatal test result: the Lettercase booklet, Understanding a Down Syndrome Diagnosis.

With that as background, let me respond to Hennessy’s post.

Let us provide expectant mothers accurate information

First, let us begin with what Hennessy and I agree on: women need to receive accurate information about Down syndrome when they receive a prenatal test result.

Really, neither of us are going out on a limb here. This is not a controversial point. Federal law in the Kennedy-Brownback Act recognizes women should receive accurate information; professional guidelines call on practitioners to provide accurate information; and women have decried their experiences where they received nothing or, worse, inaccurate, overly negative information about Down syndrome.

(We also agree that testing companies should provide accurate information, but see this post on how the GDSF pamphlet has kept that from happening).

So, let’s start with the agreement: women should receive accurate information about Down syndrome when receiving a prenatal test result. There’s just one point of disagreement on what is included in that information.

Abortion

Hennessy’s main point of contention is that the Lettercase book addresses abortion as being an option and he believes no Down syndrome advocacy organization should provide materials that recognize abortion as a legitimate option following a prenatal test result.

Hennessy is overtly pro-life and published his column on the conservative religious website First Things, so his personal position on whether abortion should be mentioned in materials for expectant mothers is neither surprising nor objectionable, in the sense that it’s his personal opinion and he’s entitled to it. But, his position frustrates the point of agreement we share. Plus, his view is not even shared by the national Down syndrome organizations.

All options required 

Hennessy begins with an analogy of college brochures. A high school junior doesn’t get into the college she most wanted to, and then picks up brochures from other schools. Those brochures, though, not only share how great their schools are but a litany of bad things the student may experience should she enroll there. The analogy: that is what an expectant mother would experience if, upon learning she isn’t getting the child she expected, she also received a brochure on Down syndrome that also mentioned abortion as an option.

The analogy ignores several key points.

  1. Expectant mothers receive information from their medical professionals and medical professionals are charged by their professional guidelines to provide certain, defined information to their patients.
  2. I know I’m mixing analogies, but Hennessy did. He says it’s not like the American Cancer Society says to keep smoking to analogize that Down syndrome organizations shouldn’t mention abortion. What he overlooks is that no professional guideline instructs doctors to advise their patients to smoke. But, professional guidelines do instruct doctors that they should advise their patients about abortion after a prenatal test result for Down syndrome.
    And, so
  3. Doctors have said they will not provide information to their patients about Down syndrome after a prenatal test result if it doesn’t cover all options, including abortion. And, this isn’t just “doctors say”–even though that was the outcome of the consensus effort that developed the Lettercase books–but it’s also what GDSF’s own market survey reported.

So, on the common ground that women should receive accurate information, the key breakdown in Hennessy’s critique is that medical professionals are the deliverer of that information and they have said they will not provide information without covering all options.

The most neutral language imaginable 

A further distinction with Hennessy’s analogy: unlike the college brochure that notifies the student of the risk of the “Freshman 15, … get[ting] an STD … [o]r someone could accuse you of rape,” the mentioning of abortion in the Lettercase book is not charged like Hennessy’s college brochure, but instead is presented in the most neutral language imaginable.

Those aren’t my words.

They’re Hennessy’s.

When he first addressed this issue in 2012, he quoted the one page (out of 27) that discusses abortion. His description of how abortion is presented in the Lettercase book:

As a committed, on-the-record pro-lifer, I must confess: This passage is presented in just about the most neutral language imaginable.

Neutral. That is better than how many women instead are counseled about termination, with it being a “preferred” or “encouraged” option by their medical providers. And, not even close to the charged language in Hennessy’s college brochure analogy.

But, what also gets lost is what else women are advised about in the Lettercase book.

In addition to helpful developmental milestone tables, information on inclusive education, and support organizations for families, women are also advised about adoption–the other A-word option. And, this is critical because otherwise it has been shown that women would not be advised of this option. But, because the adoption option is mentioned, so too had to be the abortion option.

Every national Down syndrome advocacy organization recognizes the abortion option

Finally, the title of Hennessy’s article is misleading. Now, an editor may have written it, so this isn’t a critique of Hennessy’s post. But, the headline reads:

The Down Syndrome Community’s Death Debate.

But on Hennessy’s main point, there is no debate among the national organizations. Debate suggests differing views. But, GDSF, NDSC, and the NDSS all recognize abortion as a legitimate option after prenatal testing.

I already covered GDSF and NDSC’s recognition of abortion in their public statements on their websites at this post. Similarly, NDSS states on its webpage on prenatal testing that:

NDSS recognizes that there are several reasons that one might choose to undergo prenatal testing and screening, which can include: advanced awareness on Down syndrome, adoption, or termination. 

This is what really gets me about the issue of abortion and what information to provide expectant mothers.

Deeds, not words.

Currently, NDSC is the only organization that has said abortion should not be presented as an equal option, and it has done so only in the quote from its executive director David Tolleson on Hennessy’s post from 2012 and then in my reporting of the 2014 NDSC convention, again from Tolleson’s remarks. That’s it. Lines on two blog posts.

GDSF says it’s pro-choice. NDSS recognizes abortion as an equal option.

So, if this is a position Hennessy truly holds–that no Down syndrome advocacy organization should recognize abortion as a legitimate option–and I know he does truly hold this as do many others –why aim criticism at the Lettercase booklet, a resource that is dealing with the world as it is where abortion is not only an option, but remains the option most women choose after a prenatal test result?  A resource that was a product of consensus, meaning compromises were made? And, the resource that not only is the one doctors say they will give out, but that expectant women have said has the information they want to receive?

Instead, why don’t you turn your criticism on the groups who hold themselves out as advocating for the lives of people with Down syndrome and ask them:

What exactly are you doing to address the high termination rate for Down syndrome, the greatest threat to these organizations’ future existence?

And I emphasize doing, not what they’re saying or not saying. What are they doing to specifically diminish the high rate of terminations following a prenatal test result for Down syndrome?

Because not saying “abortion” in a pamphlet isn’t addressing the issue.

Comments

  1. Laurie Larson says:

    Hi Mark
    We have had similar conversations in Canada for years now about pre-natal testing and termination. The Canadian Association for Community Living advocates with and on behalf of individuals with intellectual disabilities and not just DS specifically and know that while DS is the most widely screened condition it isn’t (and certainly won’t be) the only condition. We too are very concerned that the ‘go to’ option once a pre-natal diagnosis is given is to terminate the pregnancy. How do we address this is an effective manner? Our membership has approved a position statement which can be read in full at this link: http://www.cacl.ca/sites/default/files/Position%20on%20Genetic%20and%20Prenatal%20Testing%20Technologies.pdf

    In Canada there is no legal restriction on abortion. Women have the right to reproductive freedom. Because of who we are and what we believe we are opposed to someone terminating a pregnancy just because the fetus has DS (or another disabling condition). But also because of who we are and what we believe, a group that believes in human rights for all, how do you put one groups rights above anothers (especially since an unborn child has no legal standing in Canada)?

    We discussed banning the testing. That genie is out of the bottle though and there is no putting it back. More and more tests will continue to be developed and for more and more conditions. That is a given.

    Women have a right to abortion and that is not going to change. They also do not have to give a reason for choosing termination. If they are free to terminate any other pregnancy for any reason how can you say ‘except if the child will have a disability’?

    In my opinion, what drives most to the termination option is a fear of the unknown, archaic views of disability and historical realities of mistreatment of those with disabilities. If we hope to address the high number of terminations of pregnancies that have a pre-natal diagnosis we need to address all of these issues.

    Obviously the first thing is to get better info to expectant parents. This is where the Lettercase booklets come in. Also putting families in touch with other families helps. They need good, accurate and balanced info. The positive info has been missing completely. If parents are to make good informed choices they need all information though. The scale has been tipped all the way to one side and tipping it all the way to the other isn’t the answer. The balance does need to be there in my opinion.

    The other things that organizations need to do though is address the other issues. Get more positive stories and images of what life can be like for those with DS today, not the awful images from the past. Work to ensure that people with disabilities have their rights recognized and honoured. Work on ensuring they have access to inclusive education, employment, individualized supports, supported decision making etc. – all the things that will ensure that people will DS (or other disabilities) can lead a good and inclusive life with loving families and welcoming communities.

    There is so much work on so many fronts that needs to be done. I think it is time to settle this divisive issue on how to handle a pre-natal diagnosis and get on with all the other work that will help to turn this around.

    Laurie Larson

    • Thank you, Laurie, for your thoughtful response. And I have been remiss in not featuring the CACL’s statement, since I attended the conference in 2012 when it was being discussed. And, I agree: there is much work to be done, which is why taking time and resources to re-invent the wheel on materials for expectant mothers is at the expense of doing the other work that needs that time and funding.

  2. As science progresses, and I learn and experience more both as a mother of two children with Down syndrome and as an author/activist I see the flaws in science that puts way too much emphasis on genes and not enough on environmental factors in human functioning and well-being. It is only a matter of time untill we truly realize that genes are not set in stone and epigenetics in fact are more important in gene expression. Untill that time I keep advocating, and even if we cannot put the genie back in the bottle, I certainly take a personal stand against selective abortion for Down syndrome.

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