Brave new world

Drill 01In 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. My husband and I were kind of mortified that we’d found ourselves paying for an ultrasound in such a scenario. Our desire to see our baby overwhelmed our pocketbooks, but I was nervous about the possibility of getting news that our baby had problems. Pregnancy is hard enough without someone telling you about a problem you can do almost nothing about (save getting rid of the little one). By the way, I can’t speak for my husband but I was shocked at how well-developed a 14-week-old fetus is. I didn’t realize the fetus looked so much like a newborn during the first trimester (pictured below).

Anyway, I realized that I was in no way special and that such tests probably are given to tens of thousands of American women each day. I wondered why I hadn’t read about it before. I’d read a smattering of stories about genetic testing, but nothing that related that millions of women each year go through this.

The New York Times‘ Amy Harmon — who covers a lot of genetic testing issues — had a very interesting story this week that touches on this issue. She writes about how prenatal testing for Down syndrome is being received by parents:

DETROIT — Sarah Itoh, a self-described “almost-eleven-and-a-half,” betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.

She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.

“I am so lucky I get to do so many things,” she concluded. “I just want you to know, even though I have Down syndrome, it is O.K.”

Sarah’s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.

I wish editors would devote more resources to biotechnology reporters, because it’s clear this is an undercovered issue in mainstream media. Her take for this particular story is on that last paragraph — looking at parents of children who already have Down syndrome and how they are reacting to broader prenatal testing.

It turns out that the broad genetic testing only started this year — under a new recommendation from the American College of Obstetricians and Gynecologists. And 90 percent of women who are told their children have Down syndrome abort them. Parents of children with Down syndrome believe that number should and would drop if parents were given more balanced information about what life with Down means. Harmon says they’re engaged in one-on-one counseling and networking to reach out to parents. Here’s how she describes them:

The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.

What an interesting paragraph. I’m not quite sure what to make of it. The notion that these people would be called “parent evangelists” sounds very P.D. James-ish, no? What do you think of the evocative term? And if that paragraph isn’t full of ghosts, I don’t know what is. Reader Liz didn’t like the phrase:

Maybe these parents are just convinced that babies like their children deserve life? Why does such an effort deserve the (according to NYTimes sentiments) ugly word ‘evangelists’ when talking about why parents want to teach other expectant parents about Down syndrome children.

The rest of the article is interesting and describes the parents as motivated by anything but religion. They want more funding for research and greater acceptance of their children, she writes. Did Harmon speak only to parents who have these kind of bizarre motivations of wanting more children like theirs? What does that mean about who she spoke to? What about all the parents of children with Down syndrome who want to get the word out about what Down syndrome means simply because they believe that all children’s lives are precious? It’s kind of curious how they’re absent.

week14fetusI appreciated the reporter’s technical understanding, which was nicely woven throughout the piece. She explains how doctors used to test for Down syndrome through amniocentesis tests for women who became pregnant after the age of 35. But with the early sonograms and two blood tests, doctors can pretty well gauge earlier on whether the babies have the extra chromosome that causes Down syndrome — what (as the reporter notes) columnist George F. Will calls a “search and destroy mission” for children such as his son Jon (who is a fantastic baseball fan and has season tickets to the Nationals near where I sit).

But I wondered if that accuracy couldn’t have been quantified a bit. I’m just curious since the women on my “Urban Moms” listserv have discussed the false positives of some early chromosomal abnormality tests. I think that’s an important part of the story. Harmon does discuss mothers’ high levels of dissatisfaction with how they are told of problems their children face. One of my friends from church — who is only 14 weeks along — told me this week that her doctors gave her the results and encouraged her to abort even after she told them this wasn’t an option. She was obviously upset by how they handled the situation.

Harmon’s story is so sensitive, sympathetic and well-written. For a technical story, it is remarkably human. I have so many additional questions I want answered about the topic — so I hope that she can look into more angles in future stories. For instance, it would be interesting to ask some tough questions of the medical community. They’re the ones who are pushing this test. Why? What is their motivation? And do insurance companies have anything to do with this? What’s their motivation? And what about a deeper look at how this testing affects pregnant women in general?

First image from Rob Kay at Wikipedia. The second is from the Michigan Department of Community Health.

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  • http://theodsseyblogger.typepad.com/theodyssey/ Bryan McKenzie

    I wrote about this yesterday, it is rather disturbing.

    But even worse is this article in the London Telegraph http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/05/07/nbaby07.xml

    It seems clinics can now “weed out” embryos based on cosmetic reasons. So if you think you might not want that ugly baby…

  • http://t-hype.blogspot.com t-hype

    Anyone else notice how embryonic genetic testing has completely squelched the search for the “gay gene”?

    *ouch*

  • Brian

    Why is this news? When my wife was pregnant a few years ago we were reading about the triple-screen test and the best resource we found was someone’s on-line dissertation from the UK from several years before that was quite clear about the 90%+ abortion rate for positive tests. Of all the horrifying implications, perhaps the worst was that the test has a fairly high false-positive rate, and so undoubtedly a large number of perfectly “normal” babies are aborted due to this test (surely not everyone bothers to have an amnio to confirm the results).

    My gut tells me that a driver for this push for every woman to be tested is to cut off the possibility of future “wrongful birth” lawsuits.

  • http://www.washingtontimes.com Julia Duin

    The pressure on women to abort after these tests is unbelievable. It’s a story I would love to do; but you need willing pregnant women who don’t mind being quoted about their experiences with pushy doctors. Several years I did do a story on women who take fertility drugs, then find themselves pregnant with triplets or more. They too are pressured by “genetic counselors” to kill off 1 or more babies (a hypodermic of potassium chloride into the fetus’ skull will do the job nicely) to bring the number down to more manageable twins. It’s called “selective reduction;” the story women’s magazines won’t touch.
    And what if the doctors’ prognosis on Downs is wrong? Then you’ve aborted a healthy child.
    This is yet another topic that needs to be shouted – and warned about – from the nation’s pulpits to everyone who plans to conceive a child. Be fore-armed before the genetic counselor gets her claws into you.

  • Larry Rasczak

    Interesting you would have this today.

    Over at http://hughhewitt.townhall.com/ (you have to scroll down to get it) Dean Barnett is talking about his Cystic Fibrosis, and how the CF foundation decided to “cure” the disease by simply encouraging every woman who has a fetus that tests positive for CF to abort it.

    Dean asked his Dad (who was on the CF board) about this, and “would you have aborted me”? Dad replied that Dean would have just been reincarnated into the next baby his Mom would have had, except he wouldn’t have had CF!!!

    This whole discussion reminds me of the line in the Original Star Trek about “The Eugenics Wars of the 1990s”.

    (The one with Ricardo Montalban…Space Seed for you die hard Trekkies).

    Sigh…

  • http://www.commonwealmagazine.org/blog/ Peter Nixon

    As someone who works in health care, I just wanted to make a couple of comments.

    Ultrasounds are performed in the first trimester for reasons other than diagnosing genetic disease. You also use them to confirm fetal age and identify other health issues that may be present in the developing child.

    It’s true that there has been increased interest in what is known as Nuchal Transclucency testing, which is a very detailed ultrasound of the back of the child’s neck to test for Downs. This is increasingly becoming common and the ACOG is now recommending it, but it’s not clear to me that the supply of ultrasound techs who are trained in it (and it’s a fairly complicated scan) can meet the demand at this point.

    Until the availability of NT, the major ways of screening genetic disease in the first trimester was the alpha-fetal protein (AFP) test or the so called Triple Marker Test. But these tests only tell you your risk. They can’t diagnose and patients often followed up with a diagnostic procedure later in the pregnancy.

    The demand for ultrasound has been driven primarily by ultrasound manufacturers and by patients themselves, who want those wonderful pre-natal pictures to send around to relatives and friends. Believe me, most insurance companies are deeply skeptical of the clinical benefit of a lot of the ultrasounds being performed on pregnant women these days. But any effort to place limits on how many ultrasounds an insurance company would pay for would swiftly be met with an angry response by patients, consumer advocates and legislators.

    Having said all this, there is no question that there is a lot of effort being devoted to diagnosing genetic disease earlier in pregnancy, with all the associated issues that Mollie addresses in her post.

  • Chris Bolinger

    An excerpt from the Hippocratic Oath, from Wikipedia:
    …I will prescribe regimens for the good of my patients according to my ability and my judgment and never do harm to anyone.

    To please no one will I prescribe a deadly drug nor give advice which may cause his death.

    Nor will I give a woman a pessary to procure abortion.

    But I will preserve the purity of my life and my arts…

  • Larry Rasczak

    Chris,

    It may interest you to know that the Hippocratic Oath now taken by meidcal students was re-written several years ago.

    The “modern” version is here

    http://www.pbs.org/wgbh/nova/doctors/oath_modern.html

    It says

    “I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.”

    So I guess it is OK to kill your patients now, as long as you feel bad about it later and talk to your therapist about it.

  • http://mithras.blogs.com Mithras

    I know, why we pass a law!

  • Kristine J

    My youngest child is 11 years old, and I was given the choice to have amnio testing, because I was over 35. The test had a fairly high risk of miscarriage, so I asked why I should take it. The doctor said to check for downs, I said, no thanks. There are actually three women in my school (I teach) who have refused this particular test, because we are opposed to abortion, and that would have been the only recourse, according to the doctor. Now that the risk of miscarriage is gone with the ultrasound proceedure, I think it’s easier to bow to the pressure, and if Downs is detected, it would be quite difficult to resist a doctor who counselled you to get an abortion. I wonder if the next step is to withhold insurance coverage for a baby who is born with Downs if you were given the alternative of aborting the baby. I don’t see enough coverage of THAT kind of issue in the mainstream media.

  • Sarah Webber

    I was just a few weeks pregnant last year with our now 6 month old daughter when our son was given a diagnosis of high-functioning autism. I expected and received more pressure to run tests while I was pregnant and I (we) firmly refused all of them. I was honestly suprised that my ob/gyn office didn’t push harder because while the statistical chance of a child with autism is 1 in 150 for a first child, when you already have one it jumps to about 7%. We won’t know for at least a year if she is also autistic but we wouldn’t trade her for anything. Having an autistic child is certainly hard but he is the son God gave us and we love him. Now, yes, autism is much harder to test for–they’re only just starting work on creating the tests–but I wouldn’t have taken one even if they were available now. All life is precious.

    Blessings, Mollie.

  • Deacon John M. Bresnahan

    About 27 years ago my wife and I were expecting our fourth child. However, we have an Rh blood problem–she is negative and I am positive. And we had had our first two before the treatment to alleviate the problem had been developed and thus it was too late to do anything but carefully monitor the child through amniocentisis, etc. and give him a blood transfusion in the womb if necessary, or if possible, wait until near the end of pregnancy and force early delivery or do a Caesarean. As it was, the problem in the womb did not show up until late in the 8th month, an early delivery was attempted, but a Caesarean had to be done.
    My main point is that so many of these tests are only talked about in the media as a prelude to abortion. Yet our doctors used the latest tests to help us deliver a healthy baby. Why don’t we see more of such positive uses of “womb technology” to save babies lives and well-being. That boy we gave the name Luke to was delivered two months after I was ordained a permanent deacon. At my ordination my wife’s belly overflowed the top of the bench in front of her. A lot of family jokes were told about the state of shock Holy Cross Cathedral must have gone into at such an ordination sight.
    Incidentally, Luke graduated Summa Cum Laude from college and is just finishing a 4 year hitch in the army (because he wanted to give back to his country some of what he had been given).

  • http://www.getreligion.org Mollie

    “My main point is that so many of these tests are only talked about in the media as a prelude to abortion. Yet our doctors used the latest tests to help us deliver a healthy baby.”

    So true, John. In the case of my early ultrasound — it was solely for genetic testing and the technician explained that the only thing that could be done — other than abortion — if we tested positive was to prepare for a possible heart surgery at delivery. But, as she noted, we would have also been able to test and subsequently plan for that at the regular 20-week ultrasound. They do these particular tests earlier for a reason . . .

  • Chris Bolinger

    Nothing like rewriting an oath that had stood for 2,300+ years so that doctors can have the “responsibility” to “take a life”. I imagine that we’ll see fewer and fewer OBs who are opposed to abortion, because OBs will face increasing pressure to counsel pregnant women to abort their children because those children may have a disability.

  • Roberto Rivera

    To give credit where it is due, Tucker Carlson wrote about this issue more than a decade ago. One of the first cover stories for the Weekly Standard was entitled “Targeted for Elimination” and rehearsed the facts that have become commonplace in some sectors of the pro-life movement.

    When my wife was expecting, her OB-GYN mentioned amniocentesis and simply assumed that Deb would, as a 36-year-old first-time mother would undergo the procedure. When we said “no,” she asked “why?” to which we replied “we wouldn’t act on the findings.” She looked at us as if we had three heads between us. As it turns out, David didn’t have Down Syndrome — he’s autistic.

    As the father of a wonderful, kind, loving — in other words, great — autistic son, I find this targeting of the less-than-perfect a crime against God and man that just begs for divine retribution. I rarely, if ever, speak (or write) like this. P.D. James, indeed.

  • http://www.wildhunt.org/blog.html Jason Pitzl-Waters

    Re: The Hippocratic Oath

    It is interesting to find some purists for the Hippocratic Oath here considering how it starts off…

    “I swear by Apollo, Asclepius, Hygieia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment, the following Oath.”

    It should also be noted that views towards abortion in pre-Christian Greco-Roman society were complex (no surprise). The admonitions against abortion and euthanasia in the original oath came from very different places culturally and morally than today. It was a document written for a very specific class of medicine workers (notice it doesn’t include surgeons, midwives, or herbalists) and didn’t encompass the only thought-process or morality on the subject. Indeed the theories of Hippocrates are far removed from modern medicine, not because doctors now perform abortions, but because the medicine of Hippocrates was largely a medicine of helplessness in the face of diseases and ailments they had no way of understanding.

    So while I’m all for a spirited debate on the morality of abortion or genetic testing on fetuses, lets not drag the revisions to the Hippocratic Oath into this as some sort of moral club in which to beat your philosophical opponent. Even if abortion were still illegal, the oath would have been revised several times over to make it applicable to modern medicine (and non-polytheists).

  • http://www.getreligion.org Mollie

    I agree with Jason — there are limits to how interesting the revisions of the Hippocratic Oath are.

    But that doesn’t mean that reporters shouldn’t ask what motivates doctors, particularly in this case with those doctors advocating abortion of children with chromosomal abnormalities.

  • http://www.geocities.com/hohjohn John L. Hoh, Jr.

    My gut tells me that a driver for this push for every woman to be tested is to cut off the possibility of future “wrongful birth” lawsuits.

    Not to be calous, but if someone can file such a lawsuit, why can’t they take their own life, if that is indeed what their wish is?

    “I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.”

    Well, the new version covers HIPAA and does a nice tip-toe around the God issue.

    Regarding ultrasound, in India they found that women are having ultrasounds done in order to abort any female babies. The government regulates who can buy and use ultrasounds and that they cannot be used for “sxual selection” by the parents. But, it seems, India has this tradition of the wedding dowry that is very expensive when you have a daughter needing to be married.

    The article certainly scratches the surface–but leaves many itches unattended.

    An interesting note is the elimination of the “imperfect.” I guess the goal is to have only blond hair, blue-eyed people. Has that ever been tried before?….

  • win

    Rod Dreher asks in “Where are the Down children?” that this is “A group silently and methodically targeted for extinction.”

    Have a look at

    http://www.beliefnet.com/blogs/crunchycon/2007/05/where-are-down-children.html

  • Chris Bolinger

    My point, Jason, was simple: Since people began practicing medicine, no matter how primitive, their mission has been to preserve and prolong life, not to end it or counsel people to end it. The original Oath captures that mission. It is obvious that the Oath has been edited not to “make it applicable to modern medicine (and non-polytheists)” but to change the definition of the role of a physician in a fundamental way. If you believe that I am using the Oath as a “moral club” with which to beat those who think that it is OK for physicians to counsel people to end life, then so be it.

  • http://www.wildhunt.org/blog.html Jason Pitzl-Waters

    Since people began practicing medicine, no matter how primitive, their mission has been to preserve and prolong life, not to end it or counsel people to end it.

    I disagree with this sweeping generalization concerning medicine (and the morality of euthanasia and abortion) in ancient cultures (a topic I have done some study on), but I fear that a debate on such would fall well outside the scope of this post, which is to discuss the media coverage of sonograms, genetic testing, and the aborting of fetuses who could have Downs syndrome and other disorders.

  • Chris Bolinger

    Fair enough.

    As Mollie mentioned, and I have heard elsewhere, 90% of women who are told their children have Down syndrome abort those children. I skimmed ACOG Practice Bulletin #77, “Screening for Fetal Chromosomal Abnormalities”, which defines the “new recommendation from the American College of Obstetricians and Gynecologists” mentioned in the NY Times article. Surely, this OB/GYN body would at least mention what expectant mothers do when they have a positive test for Down syndrome.

    Nope. The bulletin discusses the “risks and benefits of diagnostic procedures” but makes no mention of how mothers respond to the results of those procedures. Here is my favorite excerpt:
    “Patients may decline Down syndrome screening because they would not use the information in deciding whether to have a diagnostic test or because they wish to avoid the chance of a false-positive screening test result.”

    In other words, a mother may be concerned that a diagnostic test might harm her “healthy” baby or lead her to abort a baby that turns out to have been “healthy”. Nine out of 10 babies with “disorders” will be aborted, but I guess there’s no need to discuss that in the bulletin.

    I agree with Mollie that reporters should be asking the medical community why it is pushing early screening. But I think that the reason is obvious. There are fewer complications when a baby is aborted at three months than at seven or eight months. That, as they say, is the bottom line.

  • Larry Rasczak

    I have to disagree with Jason and Mollie.

    What I think we are talking about, is not so much “the media coverage of sonograms, genetic testing, and the aborting of fetuses who could have Downs syndrome and other disorders” but media coverage, (or more importantly the lack thereof), of attempts to “Build a Better Human”.

    I mean that is what all this genetic testing and abortion is all about isn’t it? People want to live in Lake Woebegone, so they achieve that goal by simply eliminating anyone who isn’t strong, good looking, and above average.

    Once you accept “Sucks to be you” as your moral guide, it is really quite easy.

    The Spartans did it, Social Darwinists liked it, Margaret Sanger wrote in support of it, (as did Nietzche), and the Eugenics movement was quite strong in America until the Nazis took the lead and “gave it a bad name” simply by following it out to its’ logical conclusion; (and lets not forget the idea of “The New communist Man” either). Various science fiction stories have debated the morality of reviving the idea for years.

    Now it is back, and most of the media is comfortable enough with the idea we don’t see a lot of coverage on it. That scares me.

    And I think that since we humans have “been here, and done this” before, history, (and the rewriting of the Hippocratic Oath) should serve as warning signs of where this road goes.

    See the poem I have linked to below.

    http://www.poetryloverspage.com/poets/kipling/gods_of_copybook_headings.html

  • Elizabeth

    We were just discussing this issue over at RedState. I am a pro-life person with a different perspective on prenatal testing, and I have gone through the experience of delivering and am now raising a child with Down Syndrome. To see my rather lengthly comments on the issue, please check out the link below:

    http://www.redstate.com/blogs/corbenrice/2007/may/09/to_test_or_not#comment-446890

  • Byrd

    I posted this at Rod Dreher’s site as well:

    Our youngest has mild Downs Syndrome. It is possible that he is Mosaic Downs, since he has no heart, lung, vision or hearing defects, but that would take tests to find out for sure and they would only annoy him. The greatest affect was low muscle tone. He could not sit up by himself at 15 months. We had the AFP test, and it came back with possible DS, but it has many false positives (we did the math.) We did not have an amnio because of the miscarriage risk (I knew of a case where it happened.) We told the Ob/Gyns that we weren’t going to “send the child back” anyway, so there was no need to test farther. But I lived with that thought everyday until the birth. It’s not easy to wonder about “Is something wrong with the baby.”

    At birth all appeared normal, the diagnosis was a year and a half later. It was a shock. He started with therapists with the “Infant and Toddler Program” within 2 months of the diagnosis. He started at a school that was started decades ago by the ARK at 3. Now at 8 he no longer needs individual physical therapy to give him strength to offset the low muscle tone; he can run, jump and climb. He still gets Speech Therapy and Occupational, but is making advances in both. He is learning to read, slowly, but surely. He can use a computer to go to storybook sites and ones that do phonic alphabet work. He has developed a taste for “Animaniacs” and “Pinky and the Brain” recently and can start his own tapes and DVDs. He isn’t stuck, just delayed.

    One thing though about the idea of “where are all the Downs children.” We did research when we found out and the diagnosing doctor told us more. Before about 20 or 30 years ago, most children with Downs died in childhood due to things like the heart defects and other disorders that are common as well as diseases; the average length of life was 9 according to one source we read. The usual suggestion was to institutionalize them, where they did not get therapy and stimulae and education such as is available now.
    It was rare to see an adult with Downs in public, let alone children. They were hidden, put away and not talked about. Just because they were not diagnosed before birth and aborted doesn’t mean that they were necessarily treated well and encouraged.


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