Of Honest Labels and Down Syndrome

 “Can a mother forget her infant, be without tenderness for the child of her womb?”—Isaiah

Driving home from the hospital after late clinicals recently, I stopped at a 7-Eleven for a snack. I wasn’t particularly hungry, but I wanted something to munch on to help me stay awake. Cheddar flavored Chex Mix looked tasty, so I made my purchase and hit the road again. The open bag sat next to me on the passenger seat, and I grabbed handfuls from time to time as I listened to late night radio chatter and finished my journey.

By the time I’d gotten home, about 3/4 of the bag was gone—I guess I was hungrier than I thought—but, hey, Chex Mix has “60 percent less fat than regular potato chips” according to the bag, so I was probably breaking even, nutritionally speaking.

Anyway, I didn’t think about it much until the next morning when I heard Allison Aubrey’s NPR story about the FDA’s new, more realistic food labeling regulations. She used ice cream for an example, pointing out that the nutritional data on current labeling can be based on a half cup serving size—a half cup! I know, right? Who eats a half cup of ice cream? Allison comments:

I mean it wouldn’t even fill half of this mug here and it’d be up to a half cup, so most of us eat a lot more than a half cup. The new label will set a standard for the ice cream serving: one serving equals one cup, which is a lot closer to what we eat.

The story made me chuckle until I remembered my snack for the road the previous evening. I dug the empty package out of the trash and examined the label. That “60 percent less fat” claim? It’s based on a serving size of—you guessed it—a half cup. Then I did the math. According to the old FDA guidelines, my late night nosh was closer to being a meal calorie-wise. In fact, the FDA would’ve had me sharing that single little bag of Chex Mix with an additional two and a half people! Am I a pig or what?

So, three cheers for the FDA! Under their new rules, my Chex Mix bag would’ve provided me with significantly more candid insight with regards to what (and how much) I was jamming down my pie hole. No doubt, it wouldn’t have made a whit of difference in terms of the outcome (that is, I probably would’ve consumed about 3/4 of the bag anyway), but it might have, and that’s the point. Sure, sure, caveat emptor—“let the buyer beware” and all that. Yet basic trust is at the heart of our economy’s compact between consumers and producers, and misleading product information is no better than information that is blatantly false. In fact, misleading information is worse: It’s harder to detect and account for.

Does New Test for Fetal Abnormalities Raise Ethical Questions?
All of this reminded me of another NPR story that had just aired the day before the one about FDA labeling. This one was by Rob Stein, and it was about a new prenatal blood test that is proving to be highly accurate—and much less risky—than the standard procedures for diagnosing birth defects.

Until now, checking for fetal abnormalities involved a hit-or-miss hormonal blood test that regularly produced false positive results. Consequently, additional testing was required, including ultrasounds, but usually a more invasive test as well—either chorionic villus sampling (CVS) or amniocentesis. Both of these exams involve obtaining a intrauterine sample, and then scrutinizing it for subtle signs that something is genetically amiss with the baby.

Amniocentesis and CVS are highly accurate when it comes to diagnosing chromosomal fetal abnormalities, but both tests are risky. They require inserting an instrument into the uterus—either a needle through the abdomen or a tube through the cervix—and that means potential harm to the baby, and possibly even a miscarriage.

The new procedure—dubbed “verifi” (sic) by the manufacturer—changes all that. It’s still a maternal blood test, but instead of checking hormone levels, it isolates bits of fetal DNA that circulate in the mom’s bloodstream and correlates them with estimated gestational age. Too much DNA? A chromosomal anomaly like Down’s is suspected. A recent study published in the New England Journal of Medicine (NEJM) confirms that Verifi is a highly accurate test—about ten times more accurate than the old blood tests.

Verifi is not infallible, however, and a positive result would still require CVS or amniocentesis to get any kind of certainty. Still, the Verifi prenatal blood test greatly reduces the chance of false positives, and so it has the potential for slashing the number of women who feel compelled to get the more dangerous invasive procedures.

Sounds good, right? Prolife even, in a way.

What the Label Tells Us About Down Syndrome
In keeping with the FDA’s renewed vigilance with regards to candid product information, let’s dig a little deeper and check the label—or, rather, its equivalent on the Verifi website:

Shed much needed light on the chromosomal health of a developing fetus with the reassurance of reliable answers only the verifi® prenatal test provides. [T]he verifi® test delivers accurate genetic information safely, non-invasively, … [a]nd all of this vital knowledge can be yours in as little as 1 week’s time. Now that’s reassuring, enlightening and empowering (emphasis added).

Reassuring, enlightening, empowering. It’s right there in the Verifi ad copy. Let’s consider what meaning those words convey.

To begin with, Reassuring. That can only refer to negative Verifi test results. Based on the manufacturer’s claims and the NEJM study, expectant moms who get those negative results can be pretty confident that their babies are developing normally, and no further tests—invasive or otherwise—will be required.

Enlightening? That must be in reference to the quick test result turnaround and it’s accuracy. Obviously, the women getting these tests are hoping for a negative result, but even if it’s positive, it’s reliable information that was previously unattainable, and it’s provided quickly.

Which brings us to the third descriptor: Empowering. For insight as to what Verifi means by empowerment, we can look further on the website “label”—like this question from the website’s FAQs page: “I don’t have an increased risk for Down syndrome, but I am really worried about it. Can I have this test?”

That’s a clue to the real agenda of Verifi, although it’s otherwise barely discernible on it’s online label. The brutal truth is that Verifi is intended to refine the targeting of Down syndrome for elimination. It’s generally acknowledged that about 90 percent of babies diagnosed prenatally with Down syndrome are aborted, although that figure is somewhat controversial. Still, does it matter if it’s 80 percent or 50 percent? Even 1 percent? The fact is that our culture and our healthcare system have decided to eradicate Down syndrome as if it were a virus, and tests like Verifi provide an elegant (and profitable) means of furthering that end.

Down syndrome is still commonly referred to as a “birth defect,” and organizations like the March of Dimes still pay lip service to the idea that identifying Down syndrome prenatally can allow the parents time to “prepare medically, emotionally and financially for the birth of a child with special needs, such as arranging for delivery in a medically appropriate setting.” But who are we kidding? Even the March of Dimes know that most families, when faced with hard news, will “consider the diagnosis and their options”—and when they say “options,” is there really any doubt that they mean “termination” in most cases?

Here’s the deal when it comes to Down syndrome and prenatal testing, especially since positive results so often lead to abortion: We’re not fixing a problem, but rather getting rid of the people who have the problem; we’re not reducing the incidence of a disorder, but rather reducing the sample size; we’re not curing a syndrome, but rather killing those who have the syndrome. And is this really going to make the world a better place? Is it just? Is it civilized? Isn’t it really a kind of genocide?

In the end, it does come back to inaccurate labeling, but not just the labeling on prenatal tests. More importantly, it’s the grossly inappropriate “defect” label that we insist on attaching to children with Down’s and similar conditions. No wonder our society is inclined to get rid of them!

In contrast, consider these words of Dr. Brain Skotko, a Harvard geneticist, who offered an alternative vision in the NPR story:

People with Down syndrome are artists. They’re poets. They’re athletes. Their lives are happy ones and fulfilling ones. I have a sister with Down syndrome who certainly is a life coach, for not only myself, but for my entire family. If the new tests become a routine offering, then we have to start to ask: Will babies with Down syndrome slowly start to disappear?

Pray for those with Down’s—they are not defective. Pray for their parents, their families, their friends. The world needs these witnesses to the truth that all human life is sacred and intrinsically precious—from the moment of conception, and regardless of chromosomal variation.

And with regards to Verifi and prenatal testing? Caveat emptor.

Editor’s note: This essay first appeared March 9, 2013 on the author’s blog “One Thousand Words a Week” and is reprinted with permission.