Disability, Prenatal Testing and the Case for a Moral, Compassionate Abortion
by Sierra @No Longer Quivering
Note: If the headline didn't already clue you in, this is controversial subject matter. If you come away from this article thinking that I advocate genocide of a disabled population or the coercion of women pregnant with disabled fetuses into abortion, that I hate disabled people or think that Down syndrome people don't deserve to live, you have failed to understand my point. Please walk away from the computer, breathe deeply, and start again from the beginning.
I believe that it is possible and desirable to respect disabled people while still working to eliminate genetic disorders so that children who might have had Down syndrome or cystic fibrosis (or any other disease) have a chance to be born without them. I believe that abortion of a disabled fetus can be a compassionate choice made for morally sound reasons, and does not at all conflict with the respect due to disabled people. I am firmly pro-choice, and I believe strongly that the wellbeing of all born persons in a family is paramount before considering the needs of a fetus. My position is that fetuses are incapable of being self-aware and therefore cannot experience suffering the way born persons do. The prevention of suffering is central to my moral beliefs.
Her.meneutics, the "for women" arm ofChristianity Today, recently ran an article by Sarah Eekhoff Zylstra on prenatal testing:
Apparently, science can do something awesome: tell you the genome of your fetus within the second trimester:
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 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.
Zylstra says that, "at first blush," this information looks "incredible." Yes, it does. Because it is. This kind of technology gives us more control over our own reproduction, which means that we're better able to make ethical decisions about our parenting. As Zylstra points out, parents who are expecting a special needs child can prepare in advance for what that means.
But there's a catch, says Zylstra:
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 written extensively 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.
"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?"
There are a lot of pieces to this pie, so I'm going to address them problem-by-problem. Ready? Here we go. This article:
- Fetishizes disability.
- Dehumanizes children.
- Downplays economic concerns and long-term viability.
- Minimizes the suffering of children and caregivers.
- Is logically inconsistent.
- Conflates fetuses with born children, and therefore
- Devalues labor, delivery and motherhood.