At first blush, the news that scientists can diagnose thousands of genetic disorders in an unborn human baby looks incredible.
Using a blood sample from the mother and saliva from the father, scientists at the University of Washington mapped out the entire genome of a child while he was in the womb. The discovery, which was published June 6 in Science Translational Medicine, makes it possible to spot disorders from sickle cell disease to cystic fibrosis to Down syndrome in the second trimester of pregnancy.
Best of all, at least for those of us who shiver at the thought of an amniocentesis, is that it’s noninvasive.
About 10 percent of the free-floating DNA in a mother’s blood belongs to her baby, and by comparing her blood with her own and the father’s DNA, scientists can pinpoint which DNA belongs to the baby. From there, they can sequence the child’s entire DNA code.
Or at least, they can get pretty close. Their accuracy rate was about 98 percent in the infant boy they tested.
And I find myself wishing this test had been around when I was having my kids. How great would it be to know for sure that your baby is okay? You could breathe more easily, knowing that your infant would be born whole and healthy.
And if he’s not, well, then at least you know. You can be emotionally prepared for his birth. You could choose a C-section if that was warranted, or line up services for him, or join a support group.
Or abort him.
That’s the rub, said Gene Rudd, president of the Christian Medical and Dental Associations.
It’s hard to imagine this test wouldn’t be the instigation of selective abortions, since many women with prenatal diagnoses of Down syndrome currently abort, he said. “It’s search and destroy that we do that now with Downs,” he said. “And to what benefit do we do that? If we look at the statistics or surveys that come from families that have raised a Downs individual, 97 percent said it was rewarding.”
It’s a life worth living, and many see that, says Amy Julia Becker, who has writtenextensively about her daughter with Down syndrome. Heart conditions and respiratory troubles often suffered by those with Down syndrome can be treated, life expectancy has risen from 25 to 60, and by all accounts, raising a son or daughter with Down syndrome can be a wonderful gift. The numbers are tricky, but Becker says that about 70 percent of babies prenatally diagnosed with Down syndrome are aborted.
Becker even declined extensive prenatal testing in subsequent pregnancies despite an elevated risk of the syndrome, saying she would welcome another child with Down syndrome.
But not everyone thinks the way she does.
“Ultimately, the problem is that we have a society that says it’s okay to kill unborn babies,” Rudd told me. “If that weren’t permissible, this information wouldn’t be misused.”
Prenatal testing in a country with legal abortion lets parents decide if that child is “good enough” to live, he said. But as imperfect, capricious, sinful beings, how do we figure we’re smart enough, or good enough, to judge anybody else’s shot at life?
“Who are we to say that cystic fibrosis is such an overwhelmingly terrible disease that they shouldn’t be allowed to live?” Rudd said. “Do we say that about a one-year-old who is diagnosed? What’s different about a younger child?”
But now the test is there. The information has been released, and we adore information.
I understand that. I like information, too. It helps me to make better decisions and to map out my plans.
The problem comes when I start depending on information—more, faster, better information all the time—to try to control my world. The data I pile up props up the illusion that I can adjust the settings on life, that I can reason my way around God’s plan. I begin to think the choices that I make are better-informed than what God has for me.
After all, if I know, then do I need God? Didn’t humanity stumble and trip over this quest for information?
Aren’t we still stumbling over it?
Just because information is new and different doesn’t make it an advance, said William White, a practicing obstetrician in Franklin Park, Illinois.
If an early diagnosis could help the child, White would be all for it, depending on the number of false positives and severity of the risks, he said. “But at this point we don’t have anything to offer a baby diagnosed with genetic disease in pregnancy.” So the question is more theological and philosophical than practical, Rudd said. Are we the sum of our genes?
Of course not.
Of course there is more to us than our height and hair color, our asthma or diabetes or autism. Our genes don’t begin to reveal the depth of love that we’re capable of, the ways we bring joy to others, the unique ways that we can serve.
It’s not that the test is bad. To be able to map a child’s DNA while they’re still in the womb is fascinating.
But so is the fact that many mothers believe that it would be worse to live in an imperfect body than not to live at all.
Sarah Eekhoff Zylstra regularly writes news stories for Christianity Today, including a piece on “The New Pro-Life Surge.”