Ghosts in new Down syndrome tests

Back in 2007, the divine Mrs. M.Z. Hemingway headed to the doctor for a perfectly ordinary reason. However, there was a twist in the plot that she described in a highly personal post entitled, “Brave New World,” which focused on a New York Times science story. Her post started like this:

In the blur of the first weeks I was pregnant, my doctor told me to get an ultrasound. I complied and when my husband and I showed up for the test, I asked lots of questions about what we were there for.

The technician was very frank with me that we were there for genetic testing and that basically meant they were trying to detect Down syndrome. She said early genetic testing was for the sole purpose of giving us “enough time” to “make a decision” depending on the results.

The decision she was referring to is abortion, of course.

But of course. I thought about MZ’s earlier post while reading a new piece in the New York Times on a related subject. The good news, this time around, is that the great Gray Lady managed to signal — right in the lede — that this is an area of medical science that raises certain types of hard, challenging questions.

Thus, this new report opens:

New tests are coming to market that can detect Down syndrome in a fetus using a sample of the mother’s blood, potentially reducing the need for riskier invasive tests while also stirring ethical concerns.

Researchers say the new tests may not be reliable enough yet to replace amniocentesis or chorionic villus sampling, two invasive techniques that carry a slight risk of inducing a miscarriage. But they may lower the numbers of women who undergo those tests but then learn their fetus is normal.

And the precise nature of those “ethical concerns”? Yes, my question is linked to problematic number — 92 percent — that is hinted at in the story, but never mentioned.

There is this serious, but vague, passage midway into the story:

Similar techniques are already being used to determine the gender of the fetus and paternity. Some people worry that use of such tests early will lead to more abortion of fetuses with minor abnormalities, the wrong sex or an undesired father.

“The number of American women who will have to grapple with this information prenatally will substantially increase,” said Dr. Brian G. Skotko of the Down syndrome program at Children’s Hospital Boston. His sister has Down syndrome, he said, and he pointed out that these tests could encourage more people to end their pregnancies, causing a decline in the numbers of people with the condition and leading to diminished support for them.

Are we talking about increases in that 92 percent abortion rate? That’s what readers cannot tell, for the simple reason that the Times article mentions “ethical concerns” and the fact that these new tests could “encourage more people to end their pregnancies,” but never addresses the issue head on. It never cites the statistics that show just how sweeping an issue this is in the context of modern America.

More than 92 percent? Who knows?

Thus, cheers for the Times for getting the “ethical concerns” into the lede. This is a powerful news hook for many, many readers.

However, I think the team behind this otherwise fine story deserves a few jeers for dropping the ball about the stunning trend behind these “ethical concerns.” Journalism is about specifics and, in this case, there are few about the ethical, moral and, yes, religious decisions that will be linked to the strengths and weaknesses of this test.

Thus, I think this story is haunted. I also believe that Eunice Kennedy Shriver would agree with me. I think that many of “her kids” would agree, as well.

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About tmatt

Terry Mattingly directs the Washington Journalism Center at the Council for Christian Colleges and Universities. He writes a weekly column for the Universal Syndicate.

  • http://cause-of-our-joy.blogspot.com Leticia Velasquez

    At least the NY Times mentions ‘ethical concerns’. The LA Times does not even do that. And that writer went on to write another, better, article the next day quoting Dr Skotko’s work and the opinions of parents. We had had an email exchange, and I like to think it made a difference.
    The increase in abortion can be explained thus. Only a small percentage of women get amnio or CVS to get a diagnosis of Down syndrome at this time. Once MaterniT21 is available, all women are likely to use it since its non-invasive, and the Obama Administration is planning to pay for prenatal tests under Obamacare (recent HHS recommendations for women’s preventative care:preventing such babies from being born is apparently some type of care). THEN the 92% abortion rate will apply to ALL pregancies of Down syndrome, and our beloved children will be no more, just when we had promising research breakthroughs.
    Read my article on those here.

  • Laura

    My now 14 year old daughter had a blood test early in my pregnancy strongly indicating that she would be anencephalic – same test for Down’s but opposite results. Right away an amniocentesis was recommended to which I flatly refused owing specifically to the potential for miscarriage. This floored my obstetrician, and I requested frequent ultrasounds, which I got, so that we could prepare ourselves for any major birth defect.
    My daughter, born entirely normal, is an exceptional student, excels in math, quiz bowl, cross country, and plays the guitar and piano. She was named by her fellow students in the 8th grade as the class leader.
    How many people’s lives are ended due to false test results? We, as a nation, lose great joy due to our lack of willingness to, potentially, take a more difficult path, and, in fact, justice is served isn’t it?!

  • http://!)! Passing By

    Years ago, I ran group homes for folks with mental retardation and one of my homes consisted mostly of middle-aged Down’s folks. There are two opposite errors to make in writing about those people, first that they are vegetables and a drag on society, and second, that they are saintlike. They are neither, but I can tell you that when my blood pressure went up (group homes are high-stress work), I could count on the one house group to calm me down and make me feel human. Moreover, one of our guys who was totally withdrawn when he was institutionalized ended up working as a sacker at the grocery store for some years.

    Someone write stories about that sort of thing and not just the difficulties.

  • J

    I don’t see the journalistic problem here. The article noted the ethical issue was abortion. The problem is that there might be an increase in the number of abortions, as more people would get testing since it would be easier. The 92% number isn’t critical to the story.

    It is worth noting that the concern about their being fewer Down’s syndrome children with this testing may not be true. At least one study has found that advanced maternal age has offset the decline in number of Down’s children. See http://blogs.discovermagazine.com/gnxp/2008/09/down-syndrome-and-abortion-rates/.

    In reality, there is no ethical issue with the new test itself. If abortion was illegal, testing for Down’s syndrome to let parents become educated about caring for the child would be a good thing, and no one would object. The real ethical issue is not new: abortion. At the end of the post you appeal to Eunice Shriver and the special Olympics kids, but they are no more special than any other kids. Personally, I would leave the decision to each mother and her conscience as influenced by those with whom she consults-mine is clear to allow that.

  • Julia

    Something I’ve not seen in any article – the visibility of Downs’ children and adults. There are several who are joyful baggers at my grocery store, and I see some kids out and about with their parents now and then.

    When I was growing up in the 50s I first heard a whispered story that a classmate had a Mongolian younger sibling, but never saw the child. I’m sure I was an adult before I actually saw a child with Down’s syndrome. Apparently, in those days, they were immediately sent away to a care facility and never came home.

    The irony of the 92% at a time when the public was getting used to seeing them and recognizing their potential is never mentioned in these articles.

  • http://ontheotherfoot.blogspot.com Joel

    … he pointed out that these tests could encourage more people to end their pregnancies, causing a decline in the numbers of people with the condition and leading to diminished support for them.

    I think that’s a particularly telling point. The ethical concern is that if there aren’t enough, the ones who live won’t get enough support. There doesn’t seem to be (either to the doctor or the reporter) an ethical angle involving the actual abortion.

  • Karen

    Good post. For that matter, I’m astounded that the media, when discussing abortion at all, never discusses actual numbers or percentages. eg, nearly 24% of ALL diagnosed pregnancies in the US end in elective abortion. So many people have no idea the percentages are that high. Someone at work just straight up did not believe me about the Down’s syndrome abortion percentages. It sounded so outrageous to her that she accused me of exagerating to make a point… Oh, it’s outrageous alright…


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