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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