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.

Richard Becker

By

Richard Becker is a husband, father of seven, nursing instructor, and religious educator. He blogs regularly at God-Haunted Lunatic.

  • poetcomic1

    One small peeve. No one ever finishes the great Isaiah quote, “Will a mother forget her suckling child, for pity the son of her womb? Yes, even these may forget, but I, I will not forget you.” In the Hebrew, the word ‘ani’ (I) is repeated twice by God the Father, making it one of the most powerful ‘mercy verses’ of all.

    • Wilma

      That repeated “I” has spoken volumes to my soul. Thank you! Wonderful that God says a loud “yes” to each precious life.

    • papakevin

      Beautiful. I was thinking exactly the same thing when I read it. However you left off before the very best part which I cant shake the feeling is a reference to Christ’s nail scared hands and the price He joyfully paid to redeem us. The very next part of the verse says “Behold, I have engraved you in the palms of My hands.” Hallelujah!

  • Reasonable_Opinion

    The “empowering” options are really quite simple: birth or abortion. Thank you for your insightful words which may fall harshly on the ears of some parents. In keeping with the honestly theme, it must be said that while these children are: “… poets. They’re athletes. Their lives are happy ones and fulfilling ones, ” they do indeed present unique, special and sometimes difficult challenges–even burdens for parents and yes, society. But these are BLESSED burdens beyond measure for all involved.

  • A couple of years ago on Mother’s Day I wrote this

    http://outsidetheautisticasylum.blogspot.com/2012/05/i-am-unfit.html

    Seems that this poem is ever more poignant.

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  • Trish Browning

    What frightens me as well as the “elimination” of Down’s is the add on of..”and sex chromosomes”. This makes the “defect” of being the “wrong” gender a death sentence. Heaven help us if this test becomes affordable in Asia….you think we are missing a ton of little girls NOW? What if simple bloodwork testing can be done in time for a nice, safe first trimester termination? (And yes, that entire last sentence is designed to be nasuea producing…)

    • Billiamo

      Of course it will become affordable in Asia, Trish. Illumina will ‘make a killing’ there. Many killings.

  • pedirn1

    I am a pediatric RN, a Faith Community Nurse and I teach nursing students. My workplace is a rehab hospital for children and part of our population are children who are medically fragile. I also take clinical groups to this facility. These children teach many life lessons, which is their ministry. Mostly, they teach without words or even much interaction. Their families and caregivers learn unconditional love and self-sacrifice, among other lessons tailored to that family. The children bring many rewards to their families. My grandson is also special needs, with an inborn error of metabolism. If his mother had known she would have a child with this problem, he would have been aborted. I thank God, repeatedly, that the screening test she had as a teenager showed she was not a carrier. He is a major blessing to both sets of grandparents, the extended families and has been instrumental in fostering his parents’ maturity.
    The families that choose to abort based on genetic abnormality or gender are the losers, as these children will go straight to the arms of God, Who will welcome them as the blessings they are.

    • papakevin

      pedern1, You have been gifted with some beautiful and priceless insites.

      A couple years ago I was at work and out of “The blue” this realization struck me with such clarity and force that I covered my face with my hands and kept repeating “Wow wow wow wow.” It was almost like being jolted by electricity. The realization was this. That Down Syndrome Children, perhaps all special needs Children are sent into the world precisely as God intended. They completely fulfill their life purpose and destiny. I firmly believe they have a ticket to heaven. That God sends them into the world to help us, and to bless us. To challenge us, to test us and to be our judges. They dont come into the world alone or empty handed. They are sent bearing priceless gifts to bestow upon those who love them, care for them and treat them with dignity and respect. God doesnt judge Nations on Military or economic might but according to how they respond to “The least of these.” Our Nation and the world is failing the test. Just days after having this experience at work I was in Church. In acongregation of 300 in the middle of the sermon when no one is walking around this little boy who I didnt even know yet came and sat next to me like I was his best friend in the world. Guess what? He has Down Syndrome. It was one of those unforgettable “God Moments” when I KNEW I was getting the Divine nudge and He was asking me the Question “Do I have your attention? Now that you know you have a responsibility before you.”

      We are currently building a website to share the stories of these Precious Children and how they have brought healing and blessings to their family. We recently completed two Pro Life Documentaries. I am the Producer. Our website is conceivedinrape.com. We set out to film interviews of People who were conceived in rape and incest or women’s stories who had conceived from sexual assaults who decided to parent, adopt out or abort their children. It became quite clear that The Lord was at work putting these stories of special needs children and other “Exceptions” in our path so we filmed them too. Please check out our website. My contact information is kevin@conceivedinrape.com we are looking for more inspiring interviews to post if you have any to share. I would like for people to visit the DS site when it is completed and come away from it with the absolute certainty that These children with special needs is not so much about us healing them but them healing us.

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  • stpetric

    I have been diagnosed with a different genetic condition–one that leads to blindness. Like Down Syndrome, there is no treatment; and like Down Syndrome, researchers are devising ever more accessible and reliable tests for the genetic mutations that cause it–thereby allowing parents the opportunity to “consider their options,” which of course means abortion. And it’s precisely as you say about Down’s: “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.” The shocking thing to me is that even some people with this condition consider genetic testing for it to be a great thing. Not me. I’m not thrilled about the diagnosis, but death is not preferable to blindness!

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