The Down Syndrome Community’s Abortion Rift

It all comes down to abortion. That’s what my late father-in-law always said. No philosophical disagreement, no policy debate, no theological quibble rivals our fundamental and unbridgeable divide on the question of abortion. No other issue carries half as much baggage in the public mind. Not taxes, not health care, not immigration, not war, not peace. In the final tally, it all comes down to abortion.

This disease has so infected the body politic that it has begun to make bitter enemies even out of those with seemingly aligned interests. Don’t believe me? Consider the strange case of the competing Down syndrome booklets.

Disability advocates and medical professionals alike have long lamented the scarcity of high-quality information about Down syndrome. While debate persists over the exact number of Down syndrome-related abortions, it is enough to say that a very high percentage of American women who receive a positive prenatal diagnosis opt to abort.

As the parent of a child with Down syndrome, I know from experience that doctors, nurses, and other prenatal medical professionals are badly in need of accurate information about Down syndrome so they can deliver the life-changing news to expectant parents with as much clarity”and as little bias”as possible. For many families, and for many unborn babies, access to such information is literally a matter of life and death.

In 2009, in an explicit attempt to fill the informational void, the Joseph P. Kennedy Jr. Foundation began searching for an easy-to-read booklet to distribute to doctors and advocacy organizations that would feature basic facts about Trisomy 21”the medical name for the condition known as Down syndrome, which is caused by the presence of a third copy of the twenty-first chromosome. The foundation, which works “to improve the lives of people with intellectual disabilities,” also hoped to deliver accurate information about what life with Down syndrome is like for individuals and families.

They selected “Understanding the Down Syndrome Diagnosis,” which was first published in 2008, and convened a working group to evaluate and edit the booklet. In a telling nod toward the sheer difficulty of getting disparate medical and advocacy organizations on the same page about anything, this assemblage christened itself the Down Syndrome Consensus Group. It brought together an alphabet soup of national medical associations, including the National Society of Genetic Counselors (NSGC) and the American Congress of Obstetricians and Gynecologists (ACOG), and the two main Down syndrome advocacy organizations in the United States, the National Down Syndrome Society (NDSS) and the National Down Syndrome Congress (NDSC).

This Consensus Group released an updated version of “Understanding the Down Syndrome Diagnosis” in 2010, making a free copy of the booklet available to anyone who requested it and posting a downloadable e-version online at www.Lettercase.org. The appearance of the document, now frequently referred to as “the Lettercase booklet,” was considered a major step forward in the quest to counter misinformation and equip expectant parents with the facts about life with Down syndrome.

“This booklet is the answer to the question, ‘What should be given to women when they get that prenatal diagnosis?’” Dr. Brian Skotko told me recently. A medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital, Skotko is a familiar face to those in what might loosely be called the Down syndrome community thanks to his blogging and media appearances. He has a sister with Down syndrome, and was involved in the crafting and editing of the Lettercase booklet.

Not long after our conversation, an interesting and entirely unexpected thing happened. NDSC and NDSS, the advocacy organizations that had participated in the creation of the Lettercase booklet, turned their backs on the effort and, along with the Global Down Syndrome Foundation, published their own informational pamphlet aimed at expectant families.

Earlier this month, Skotko was quietly removed from the NDSS board, and both NDSC and NDSS scrubbed all links and mentions of the Lettercase booklet from their websites.

Why the sudden disavowal of the work they had previously supported? Skotko expressed bewilderment. He told me that no explanation had been offered for his removal from the NDSS board. In a blog posting, he claimed that the new pamphlet contained factual errors. He told me that “unlike other booklets out there,” the Lettercase booklet wasn’t “propaganda.” When I asked him what he meant, he said, “Physicians need to make sure that they are presenting materials that are not lopsided or influenced by a condition-specific organization that just might be telling one side of the story.”

Condition-specific organizations? One side of the story? As he talked, I couldn’t help but hear my father-in-law’s voice in my head. “It all comes down to abortion.” Could that be what’s going on here, I wondered? Could that be what’s causing this rift?

I wanted to ask Jon Colman, president of NDSS, the largest and best-known of the Down syndrome advocacy groups, why his organization had removed Skotko from its board, but he declined my request for an interview. Through a spokesperson he referred me to a press release announcing the publication of the new pamphlet. That release does not address the controversy over the Lettercase booklet at all, nor does it mention the decision to drop Skotko.

To try to get to the bottom of things , I downloaded both the Lettercase booklet and the new pamphlet from the Down syndrome organizations and read them back-to-back in a single sitting. Sure enough, there was a striking difference”the new pamphlet made no mention of abortion while the Lettercase booklet devoted two paragraphs to what medical professionals like to call “pregnancy termination” and what the rest of us refer to simply as abortion:

After receiving a prenatal diagnosis and learning more about Down syndrome, some families opt to terminate a pregnancy. An obstetric medical care provider, medical geneticist, or genetic counselor can provide more information about safe options in your area.

Because terminations can be associated with depression and symptoms of post-traumatic stress, some women appreciate resources for emotional support. Physicians can offer referrals to professional therapists, counselors, hospital centers, and grief support groups who have experience with pregnancy loss and postpartum issues.

As a committed, on-the-record pro-lifer, I must confess: This passage is presented in just about the most neutral language imaginable. Skotko told me that in order to be deemed legitimate by doctors around the country, there had to be some acknowledgement in the booklet that abortion is, tragically, the preferred choice for the vast majority of women who receive a prenatal diagnosis of Down syndrome. To me, these paragraphs read as the product of a grand compromise between groups with distinct, yet related, agendas. I asked Skotko if the Down syndrome organizations had signed off on the abortion language prior to the publication of the Lettercase booklet. He said that they had.

I then called David Tolleson, executive director of the National Down Syndrome Congress, to see if I could find out why his organization had withdrawn its support for the Lettercase booklet and produced its own pamphlet. Specifically, I wanted to know if it was because the Lettercase booklet made mention of abortion.

“I would venture to guess that there are very few people in this country who don’t know that termination is a possibility. Health care providers can have that discussion with their patients. We don’t have to do it,” he said.

It’s a fair point. Although none of the organizations involved in this fracas seem keen to admit it, the original impetus for the creation of the Lettercase booklet was to provide a modest counterweight to a dispiriting trend: An average of 85 percent of pregnant women who get a Down syndrome diagnosis opt for abortion. Within the Down syndrome community, these rates are widely interpreted as evidence of a crisis, though there is a great deal of disagreement about what, if anything, should be done about it.

“As an advocacy organization, we don’t feel it’s appropriate to promote the value of those with Down syndrome while at the same time also discussing the possibility of abortion,” Tolleson told me.

Notably, he said, this sentiment was given voice within NDSC by so-called self-advocates, adults living with Down syndrome who are participating in ever-greater numbers in the outreach and education efforts of such organizations.

“Our self-advocates told us that it was not appropriate in a pamphlet coming from their advocacy organization to talk about abortion as co-equal to any other option,” Tolleson explained. “They did not feel that was respectful to them.”

I asked Skotko if the Down syndrome organizations had mentioned these concerns within the Consensus Group. “The information on termination was definitely discussed and agreed upon by NDSS, NDSC, ACOG, ACMG, and NSGC. All of the organizations signed off on the document, as documented on the back of the booklet,” he replied.

So why did NDSC and NDSS participate in the creation of the Lettercase booklet”and agree to put their names on it”only to withdraw support after it was published? Was it simply because the booklet mentioned abortion? Or was there something else?

Tolleson said there was: the difficult and rapidly evolving issue of prenatal testing itself.

Several new, non-invasive blood tests for Down syndrome have come on the market in the last year. These tests can be administered as early as the tenth week of pregnancy and are highly accurate when administered to pregnant women at “high risk” of having a baby with Down syndrome. This includes women over the age of thirty-five, those who have received a positive result from either an ultrasound or maternal serum screening test, and those who have at least one relative with Down syndrome.

The arrival of these new tests has added urgency to the discussion within the Down syndrome community about how best to handle the abortion-rate crisis. For some, the new tests are an improvement upon the older tests, which are less accurate and more invasive. Yet for others, like me, who think that these new tests will supercharge the already high rates of abortion of babies diagnosed with Down syndrome, there are some issues to sort out before boldly charging ahead.

Tolleson told me that concerns about the appropriateness and accuracy of these new tests informed the decision to back away from the Lettercase booklet. These new tests are “not diagnostic,” he said, meaning that they are not by themselves capable of definitively settling the question of whether a fetus has Down syndrome, and that the advocacy organizations wanted to emphasize this fact in their new pamphlet. According to the press release that Jon Colman of the NDSS referred me to, these tests are not recommended for women with low-risk pregnancies “because their accuracy has not yet been demonstrated to the medical community.”

So why not simply update the Lettercase booklet”which makes no mention of testing options at all”to reflect that?

“Our pamphlet is designed to get to patients when they are being offered testing. We think it’s also useful when they get the diagnosis,” Tolleson said. “But the important thing here is that the Lettercase booklet was never intended to be the gold standard. Now they are saying everything else should be eliminated and that their booklet should be the only one out there. On our side of the equation, we are not trying to interfere with Lettercase. We say, ‘Go, and good luck. Why are you trying to stop us and painting us as bad for trying to get out information?’”

However much they disagree about what caused this public ugliness, all parties to the dispute agree that it has become an unwelcome distraction to the original goal of helping expectant families get good information about Down syndrome. Yet, despite this common interest, they can’t seem to get on the same page.

It seems my father-in-law was right. It all comes down to abortion.

Matthew Hennessey is a writer and editor who lives in New Canaan, Connecticut. You can follow him on Twitter @MattHennessey .

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