[acb-hsp] What We Think Today

[peter altschul]

What We Think Today: Down Syndrome, Prenatal Testing, and the 
Questions We Face
  by George Estreich February 15, 2013
  On January 23rd, TdddcomstMoms reported a heartwarming story on 
which I commented in the New York Times: a patron disparaged a 
child with Down syndrome in a Houston restaurant, after which his 
waiter refused, on principle, to serve him.  As the father of an 
eleven-year-old girl with Down syndrome, I was both moved by the 
story, yet aware of the complications beneath it, the conditional 
belonging experienced by so many with disabilities.
  On January 28th, Down syndrome was back on Today.  However, 
this time the emphasis was very different.  The show profiled 
Jason and Robin Vosler, an expectant couple.  Ms.  Vosler had 
just gotten the results of a new noninvasive blood 
test-Sequenom's MaterniT21 Plus-to determine whether their fetus 
had Down syndrome.  In a much blogged-about exchange, Matt Lauer 
says, "Let's get right to the good news," and asks the couple for 
their test results.  Ms.  Vosler replies that but. . .  the test 
checks for three different kinds of Down syndrome [sic], and that 
chromosome wasn't showing, so we're safe ...  the baby doesn't 
have Down syndrome."
  Some parents have expressed anger, some great sadness.  For me, 
the five-minute segment evoked a weary familiarity with a world 
of contradiction.  Sometimes that contradiction remains at bay, 
and sometimes, as in this instance, it is painfully apparent.  
One day, on TdddcomstMoms, a child with Down syndrome is a loved 
family member, and someone to protect.  But less than a week 
later, on TdddcomstHealth, a child with Down syndrome is someone 
to protect a family from.  Not being pregnant with one is "good 
news," and because of a test, a couple is "safe." You couldn't 
invent a starker illustration of our attitudes towards Down 
syndrome, and disability in general-or the difficult questions 
coming our way, as our increasing acceptance of people with 
disabilities collides with increasingly accurate prenatal tests.
  These difficult questions, however, are absent from the Today 
Show's account, which emphasizes ease and low risk.  It's true 
that unlike invasive tests such as amniocentesis or chorionic 
villus sampling, MaterniT21 avoids the risk of miscarriage by 
using a simple blood draw.  However, there are limits to the 
test.
  MaterniT21 is only recommended for "high-risk" patients, such 
as women thirty-five and older; according to guidelines issued by 
the American College of Obstetricians and Gynecologists, "cell 
free fetal DNA testing should not be offered to low-risk women or 
women with multiple gestations because it has not been 
sufficiently evaluated in these groups." The same guidelines 
offer this caution: "Cell free fetal DNA does not replace the 
accuracy and diagnostic precision of prenatal diagnosis with CVS 
or amniocentesis, which remain an option for women." As a result, 
ACOG recommends that "[a] patient with a positive test result . . 
  should be offered invasive prenatal diagnosis for confirmation 
of test results" [emphasis mine].
  In other wordseaa woman with a positive result, wanting to be 
absolutely certain, might wind up having the invasive procedure 
anyway-thereby taking on the very risk of miscarriage she wishes 
to avoid.  These complications run counter to the message of 
risk-free simplicity Today provides.
  To be fair, telling a simple human interest story, when 
testing, Down syndrome, and pregnancy are involved, is next to 
impossible.  The subject, Robin Vosler, seems chosen by Today to 
deflect controversy -- her intention, whatever the test result, 
was not to abort, and had there been a positive result, she would 
have sought out the specialists needed to help her child.  Nancy 
Snyderman, the Chief Medical Editor, emphasizes this fact, and 
follows with a straw-man argument: "Critics will say, hey look, 
this is a way to find out early and then abort because we want 
the perfect baby." In this telling, even the ethical issues are 
simple: it's the appealing, telegenic prospective mombwho just 
wanted to be prepared, and who wasn't going to abort 
anyway-versus the overwrought, anti-science "critics."
  But there are real questions to consider.  In theory, Down 
syndrome is only the beginning.  As our methods of detection grow 
easier and more accurate, how will we decide what counts as 
healthy? When dozens or even hundreds of conditions can be 
forecast, which tests will be recommended, and on what grounds? 
How can we guarantee that patients will not only receive good 
information, but be able to make sense of it? How will this test 
affect both the actual numbers of people with disabilities, and 
their welcome in our society?
  Which brings me back to how the two stories fit together.  In 
one, we're supposed to feel good about the presence of Down 
syndrome; in another, about its absence.
  For me, the separation, the fact of two stories rather than 
one, is the heart of the problem.  During the more recent 
segment, no one with Down syndrome was shown.  No parent of a 
child with Down syndrome, or expert on Down syndrome, was 
interviewed.  Given that the test's very purpose is to identify 
the syndrome, it's profoundly odd that the condition is barely 
mentioned, and the people who have it, or their families, never 
came up.  The erasure is troubling.
  We need to start putting these stories together; our tests will 
compel us to.  Ultimately, we need to arrive at a coherent 
account of who we are, as a society and as a species.  I hope 
that account will be more and not less inclusive, and that our 
stories bear accurate witness to the lives we include.  The more 
we are able to predict about our future selves, the more we need 
to value difference, and to imagine-whatever we choose-the 
connection between our values and our happiness.  In a world 
where we have the power to write those values into the species, a 
simple feel-good story is not enough.
  The Shape of the Eye, George Estreich's memoir of raising a 
daughter with Down syndrome, will be published in paperback and 
e-book by Penguin in April.  George lives in Oregon with his 
family.