by Sophie Trist
—
The New York Times rang in the new year by releasing its findings that many popular prenatal genetic tests are inaccurate as much as 85% of the time. Tests for common conditions like Downs syndrome are very accurate, but when it comes to rarer disorders, a positive result is nearly always false. For every 15 times the tests correctly identify an anomaly, they are wrong between 80–85 times. These findings have profound implications for our conversations about pregnancy and disability-selective abortion. The conversation around prenatal testing is usually rife with ableist assumptions and stereotypes, and this New York Times article is no different.
It begins by telling the story of Yael Geller, who finally became pregnant after a year of fertility treatment only to learn that her baby was missing a piece of one chromosome, what geneticists call a microdeletion.
“Sitting on the couch that evening with her husband, she cried as she explained they might be facing a decision on terminating the pregnancy… The next day, doctors used a long, painful needle to retrieve a small piece of her placenta. It was tested and showed the initial result was wrong. She now has a 6-month-old, Emmanuel, who shows no signs of the condition he screened positive for.”
If the initial test had been accurate, the parents likely would have had an abortion, and the subtext of this article insinuates that they would have been right to do so. This is far from the first story to push the narrative that prenatal testing is problematic because an inaccurate result might lead to a “normal” baby being killed.
In 2014, NBC News ran an article about how the competitive prenatal testing industry is deceiving customers about the accuracy of its noninvasive tests. The first sentence of the article rings with ableist overtones. “Zachary Diamond and Angie Nunes look at their ‘wonderfully healthy’ 6-month-old son Solomon, knowing they might have terminated the pregnancy — all because of a popular prenatal test that was wrong.” The article tells a similar story about a Rhode Island woman named Stacie Chapman, whose unborn son was misdiagnosed with Trisomy 18, after which she immediately scheduled an abortion that she didn’t go through with because her doctor urged further testing. She describes the rest of her pregnancy as traumatic and says that she didn’t want to bond with the baby. Amniocentesis revealed that Stacie was probably carrying a “normal” child. When her son Lincoln Samuel was born without any disabilities, Chapman described him as perfect.
He would have been perfect even if he had been born with Trisomy 18.
In 2018, South African journalist Claire Bell received a fetal misdiagnosis of Turner Syndrome. According to the BBC, the information on Turner Syndrome that Ms. Bell received from the clinic painted a very grim picture of life with the condition. She thought that this was science, indisputable facts, and aborting her daughter would be the kindest thing to do. As with Yael Geller, Stacie Chapman, and the rest, further testing revealed that Claire Bell’s baby was “normal,” and she was born perfectly healthy.
All of these stories about inaccurate prenatal testing have fairytale endings in which “normal” babies are saved from abortion by further testing. I have even seen this well-meaning but extremely ableist trope play out in a few testimonies from pro-life organizations.
It is tragic that hundreds of unborn children have doubtless been killed because of these false positives, but children who actually have rare disabilities are just as valuable and just as worthy of life as those who were misdiagnosed. The humanity of disabled babies is nowhere to be found in any of these narratives. None of these stories challenge the assumption that if the test result had been a true positive, abortion would have been the compassionate and correct choice. Disability remains the Boogeyman under the bed, the disaster averted. “It almost happened to us!” these narratives cry. “But Thank God further testing revealed that my baby was normal and thus worthy of existing.”
Amy Julia Becker, the mother of a daughter with Downs, offers a moving reflection on the problematic, eugenic nature of our narratives about prenatal testing.
“In retrospect I wonder why I spent so much time convincing myself that the test results would be negative. I spent no time thinking about why the prospect of a child with Down syndrome caused such tightness in my chest, such a need to convince myself that it couldn't be true of my child or within my family. Why was I so frightened of Down syndrome? Was it the way the tests were presented, the aura of somber intensity that came along with the uncertain results? Was it fear on behalf of my baby? Or fear for myself? Did it disrupt a hazy vision of the life I had always expected our family to lead? Was it the fact that a diagnosis of Down syndrome automatically led to a conversation about abortion, that Down syndrome automatically led to a choice that wouldn't have otherwise been on the table? I didn't ask myself any of those questions back then. I just wanted a healthy baby.”
These recent findings by the New York Times validate disabled people’s fears that prenatal testing is often used as a weapon to eliminate us before we’re even born. But most of the coverage on the unreliability of these tests focuses on the “normal” babies who were saved, not the inherent dignity of the disabled babies, whose lives are still seen as less valuable. Prenatal testing is not intrinsically evil. It can be used to help new parents prepare for life with a disabled child, because that life will not always be an easy one. But prenatal tests should never, ever determine which babies live and which babies die, not only because they’re often wrong, but because all children, regardless of disability, are people with incalculable worth and human dignity.
Σχόλια