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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