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Perfecting Prenatal Eugenics

When I was a kid, it took twenty-four hours to get the results from a simple strep- test. Now it takes minutes. People used to get chickenpox. Now they have a vaccine for it.

Usually, medical innovation is a good thing. But as the parent of a little girl with Down syndrome, I find news that geneticists are close to perfecting a noninvasive prenatal test that can map almost all of an unborn baby’s DNA sequence deeply troubling. This test will not be used to make your throat feel better or your leg stop itching. It will be used to abort babies. Lots of them.

As recently as seven years ago, getting an accurate prenatal diagnosis of my daughter’s Down syndrome required multiple blood screenings and ultrasound examinations stretching out over weeks. The whole fraught drama culminated in an amniocentesis featuring a needle as big as any you’ll ever see. Puncturing the belly of a woman who is five months pregnant with a probe the size of a yarn darner obviously poses a danger to the fetus. There is a one in 200 chance of miscarriage.

I’ll be the first to admit: It was no fun. If we had been given the option to avoid it all by taking a simple blood test, there is no question we would have leapt at the idea. A prenatal test which comes with a high risk of killing the baby? It begs an obvious question: How badly do you want to know?

Well, like most people, we wanted to know pretty badly. It’s understandable, and I think appropriate, that an expectant couple should seek as much information as possible about the medical needs of their baby prior to birth. While we weren’t thinking of aborting Magdalena, we did want to be prepared for the array of possible issues she might face. Kids with Down syndrome frequently have heart and respiratory problems. Some babies go straight into surgery after delivery. It’s helpful to be able to prepare for such things.

But prenatal genetic testing leads to shockingly high rates of abortion. Some estimates put the abortion rate for babies diagnosed in utero with Down syndrome at over 90 percent. While these are just estimates—and disputed ones at that—I can personally attest to what might be called the medical community’s orientation toward abortion. After receiving Magdalena’s diagnosis, and after making clear that we wouldn’t abort our daughter, a doctor/administrator at a prestigious, big-city hospital offered without prompting to help us cross state lines for an abortion after the legal window in our state closed at 24 weeks of pregnancy.

That told me everything I needed to know about attitudes within the medical community toward genetic variation and abortion: We do this all the time.

Most doctors, nurses, and medical technicians have wholly integrated the idea of abortion as simply one of many care options at their disposal. I worry that the new test will result in very little meaningful reflection on what the test actually allows—preferential selection based on the presence or lack of “undesirable” genetic traits.

If you don’t think these tests raise all sorts of ethical questions, then I’m afraid you haven’t thought very hard about what it means to be a human being. If you think that these tests will only be used to eliminate conditions that are incompatible with life, than you have more faith in the fundamental goodness of your fellow man than I do.

The good news is the University of Washington scientists who are developing the new tests appear to at least recognize that serious ethical questions exist. “Our capacity to generate data is outstripping our ability to interpret it in ways that are useful to physicians and patients,” they wrote in a paper announcing their findings published in the journal Science Translational Medicine.

Information without context is problematic in almost any scenario. But that's what these tests will provide: information about a genetic condition without the context provided by a human soul. When life and death are on the line, it’s morally indefensible to put your head down and plow ahead simply because you can.

We don’t regulate guns because guns are inherently bad—although you can make that case—but because people can’t be trusted to use them safely. Likewise, there is nothing inherently wrong with these tests. If I thought that doctors could be trusted to use them responsibly—that is, to prepare expectant parents for potentially difficult medical challenges—I wouldn’t be as worried as I am.

But frankly, given my experience, I don’t trust doctors to always do the right thing. These tests will certainly be welcomed as just another tool in the toolbox of a profession that has made peace with the idea of killing babies in the womb. The results will become just another set of data points on the decision matrix of a pregnant woman with the right to choose.

It seems entirely possible that by the time my life is over—hopefully in no less than 40 or 45 years—people will look back in wonder on a time when medicine couldn’t guarantee you the perfect baby. That world will shortly be within our reach. We should probably decide if it’s a world we really want for ourselves.

And we should probably decide now.

Matthew Hennessey is a writer and editor who lives in New Canaan, CT. You can follow him on Twitter @MattHennessey.

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Comments:

6.13.2012 | 10:07am
The Moz says:
The possibilities are terrifying.

Eugenics is bad, oh wait except if it's for uppity elite wealthy urban dwellers, then it's ok, it's compassionate, a real blessing.

Yes, we'll hear all this and more. And people wonder why the the great political middle is falling away everywhere in the West.

A nation, culture, divided can not stand.
6.13.2012 | 11:14am
John Hinshaw says:
As an old pro-lifer told me years ago, when my wife was pregnant for the first time: "when you go for these tests, the medical personnel assume you are willing to abort. Why would you want the tests otherwise?" The millions of abortions have compromised our medical industry. Another example of why Christians learn to practice restraint, even in our curiosity.
6.13.2012 | 11:20am
RL says:
I continue to be retrospectively gobsmacked that each time my wife has gone to the hospital to give birth, part of the admission form is "Would you like us to do a tubal ligation while we're at it?" Maybe it's not quite the ethical problem that abortion is, but there's something weird and anti-human about offering sterilization to a healthy young married woman who's about to give birth. It's probably even weirder than asking a healthy young married woman who's about to give birth and who is sitting right next to her husband who the father of the baby is (which has also happened every time). And both seem to be standard operating procedure.
6.13.2012 | 12:32pm
Sally Rogers says:
The bioethics big-wigs have already made their points about why the eugenics practiced in the 1920's and 30's (mainly sterilizing those considered to be undesirable) was "bad" and why the eugenics practiced today (through prenatal testing and aborting the undesirable) is "good."

First, the old kind was based on bad science -- many of the traits that caused people to be sterilized by law were not in fact inheritable traits. Being "shiftless" or "promiscuous" or of the criminal type does not mean that your kids will be like that. Furthermore, these judgments oddly singled out poor people and racial minorities more than the wealthy and powerful majorities.

Secondly, and more importantly, the old eugenics was not based on informed consent, and in fact it could be done against your will and under force of law, even for people who were legally competent to make a judgment. Since autonomy has been elevated to an almost indisputable first place in today's bioethical industry, this second problem is fatal. The old eugenics was BAD.

Since today's eugenics is based on what is deemed as good science (meaning verifiable, materialistic judgments about a biological set of facts), and since it is premised on the supposedly autonomous choice of the parents (and here we nod and frown over possible subtle pressure from health care workers), it is GOOD. The bioethicists might also pause a moment to worry about what aborting those with genetic anomalies means for our respect for the handicapped, but that pause does not last long.

The fact that we can do the tests earlier and with less risks will be good, although we will worry about accuracy. The fact that this will result in more abortions, more deaths of unique precious human beings, less love of those with vulnerabilities is neither here nor there. If more autonomous parents get better choices and better ability to control outcomes, then it's a good thing. This is what passes for sophisticated ethics in our world today.
6.13.2012 | 1:42pm
Ray Ingles says:
Is the objection only to eugenics via abortion?

Down's syndrome, for example, is caused by the zygote having an extra copy of chromosome 21, either from the mother or father. What if parents could take a pill that would kill just sperm or eggs that had extra copies of chromosomes? People with Down's syndrome would never be conceived. Would it be immoral for a parent to take such a drug?
6.13.2012 | 3:09pm
harry says:
A new test to chart the entire genome of a developing fetus is discussed here:

http://www.firstthings.com/blogs/secondhandsmoke/2012/06/07/genomic-eugenic-abortion-testing/

See also "New Eugenics: Selecting Embryos for Eye and Hair Color" at

http://www.firstthings.com/blogs/secondhandsmoke/2009/03/02/new-eugenics-selecting-embryos-for-eye-and-hair-color/

Tinkering with technology we know how to build from scratch is one thing. Tinkering with nanotechnology we have no idea how to build from scratch is quite another. It worries me that scientists are basically tinkering with human life, which consists of nanotechnology light years beyond anything they know how to build from scratch. They have a lot figured out, just like jungle savages could eventually figure out a lot about computers but still not have the foggiest idea how to build one from scratch. The savages would be learning by trial and error. If they just had a few computers to work with, they would have to be extremely careful. If they had a vast supply of computers to tinker with, they could try anything. If what they did rendered a computer inoperable they could just toss it and get another one to play with. If their experiment caused behavior which they found interesting, they could pursue that line of experimentation. Setting all ethical considerations aside for the moment, this approach doesn't work so well when we are dealing with humanity, not computers, even though it may seem like we have an endless supply of human life to tinker with.

In the case of humanity, we are dealing with nanotechnology that, unlike computers, is self replicating. All of the effects of our experimentation might not show up immediately. Some effects might not show up for generations. Suppose parents want a trait in their child that just isn't in their genetic makeup to give to their children? A little genetic engineering will take care of that, right? Possibly so, but unanticipated results may come about along with the intended adjustment, the former not showing up for several generations.

We should assume some unforeseen, initially hidden side effects of intentionally, artificially induced genetic information will inevitably show up in several generations that brings about some significant deformity or some grave deficiency, unless we believe our jungle savages will never make any huge mistakes along their journey to an understanding of how to manufacture computers. If genetic information isn't exactly right you can end up with serious health problems like those that come with cystic fibrosis, which are caused by a slight genetic flaw that reveals itself at a predictable rate in the offspring of two CF “carriers.” How many carriers of unintended and accidentally induced genetic flaws will eventually be in the population given enough genetic tinkering? What kind of problems will their children have? Grave deformities? Serious cellular malfunctions like those that come with CF? Who knows?

How much confidence should we have in a jungle savage computer repair service? Not much, but more than we should have in modern science's ability to successfully tinker with the astounding functional complexity of the nanotechnology of human life without making any huge mistakes along the way. The savages will be building computers from scratch long before modern science understands the nanotechnology of life to the extent that it can tinker with it and not place humanity in great peril while doing so.
6.13.2012 | 6:26pm
Maxim says:
There has already been a genocide directed against those who are genetically different, as support organizations for people with Down's Syndrome and their families have been pointing out.
6.13.2012 | 7:00pm
Gail Finke says:
My kids are now 18 and 15, and I was 30 when I had my first. The doctors offered me prenatal testing -- more insistently with baby 2 -- and seemed surprised that I said no. They just assume you want to know.

RL: I was never asked whether I wanted my tubes tied. However, both births were at the same Catholic hospital, so maybe they ask at non-Catholic hospitals here.
6.13.2012 | 7:16pm
Peter says:
When my wife was pregnant, we missed some of the early prenatal testing. Later tests did indicate that something was wrong, although it wasn't possible to determine exactly what it would be. Fortunately nobody ever pulled us aside and told us we had "options", but I wonder what might have happened if the abnormality had been discovered earlier.

Anyway, my son's birth was the best thing that ever happened to me. I suppose I can't speak for women, but I find it hard to imagine that many people on their deathbed regret not having an abortion.
6.13.2012 | 11:25pm
TXW says:
@Ray Ingles, the determination of a Down's person likely doesn't happen before the first rearrangement of chromosomes, so your example is moot. Older eggs are more prone to Trisomy 21, but why research the reasons when you can kill? Even if the determination were made during spermatogenesis or oogenesis, or rather pre-zygotic, it would conceivably be appropriate to prevent an abnormal process. Assuming other protections are in place: no person is killed, no healthy functioning anatomy is directly removed or stopped from functioning, side effects are not excessively burdensome, etc. The problem lies in what is "abnormal", a philosophical question not answered well by atheistic lab geeks.
The original post says, "But frankly, given my experience, I don’t trust doctors to always do the right thing". There are lists of prolife doctors (CMDA, CMA, One More Soul, AAPLOG, etc.), and one can easily find someone to transfer your care if desired. But if a blanket attitude of distrust is carried over to a doctor who genuinely cares for life, then that relationship will not go well.
6.13.2012 | 11:34pm
"But frankly, given my experience, I don’t trust doctors to always do the right thing."

Neither do I. One of my childhood friends who became a respected ENT specialist always said that one's most important medical choice is choosing a Christian doctor. These days, we should add pro-life, anti-euthanasia Christian doctor.

For this very reason, I have for many years refused to complete an organ donor card, and my wife does also. I don't trust the medical profession to wait until I am truly dead to harvest my organs. I do have a living will that gives my wife that power, and she has one granting me the same power. But giving this power legally to someone I don't know is not something I am, or ever will be, prepared to do in this culture of death. As I age, it becomes less of an issue, as natural "depreciation" reduces the value of whatever I may leave behind.

Of course, at this rate, soon they'll just do whatever they want, and will disregard the law altogether, but I can't help that.
6.14.2012 | 2:46pm
Ray Ingles says:
TXW - My point wasn't moot, but rather hypothetical. I was asking, 'could an intervention to prevent the conception of someone with Down's syndrome be potentially moral' - and you did answer that question. Thanks.

BTW, careful with the language, though - if you're wiling to denigrate "atheistic lab geeks" how long will it be before someone's deriding "fundamentalist weirdos"?
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