Has Prenatal Genetic Testing Gone Too Far?

On Monday, CBS News reported that the increased practice of prenatal genetic testing has led to the near "eradication" of Down syndrome in Iceland — not because doctors are treating Trisomy 21, the chromosomal anomaly that causes the characteristics associated with Down syndrome, but because pregnant people who have been told their fetuses carry the mutation are choosing to terminate.

The news struck a nerve on Twitter, where many expressed outrage. I can understand why people are so upset. I was 18 when my mom got pregnant with my little sister. She was 39, and therefore at a much greater risk of carrying a baby with Trisomy 21 than if she had been five years younger. Her doctor offered her a genetic test to determine the baby's chances of having Down syndrome, and my mom outright refused. Then the doctor offered it again, and again, each time pushing harder.

I found my mom crying one night on our back porch. "I don't know what to do," she told me. "They're basically asking me to have an abortion if the baby has Downs. I would never do that."

The doctor could never have forced my mom to undergo genetic testing or to decide to have an abortion if it determined that my sister would likely have Down syndrome. Neither is a requirement, not here nor in Iceland. And by refusing to even take the test, my mom was making clear what her choice would be, regardless of the outcome. But almost 100% of people in Iceland make the opposite choice (according to CBS, only about two children with Down syndrome are born in Iceland each year), which is what spurred this debate in the first place.

Some, like former presidential hopeful Ted Cruz, specifically call out CBS for "celebrating" the news. But, if you read both CBS' tweet and the story, the site never takes a positive stance on Iceland's termination rate. It discusses the long and healthy lives people with Down syndrome can lead. The focus of the backlash, though, is more the content of the news: the mere fact that doctors (In Iceland and the U.S.) are offering pregnant people genetic testing that could determine if their fetus will have Down syndrome, and a majority of those people in Iceland are choosing to terminate pregnancies that test positive.

Sarah*, a mom of two in New York, while trying for her second child, learned through genetic testing that she was pregnant with a fetus carrying trisomy 21, the mutation that causes Down syndrome. She told Refinery29 in an earlier interview that she felt called to care for the baby as a religious Jew. But, her husband felt strongly that he was not up to the task. "My husband said, 'I can’t. I’m not equipped [to be this baby's parent]. I don’t have it in my capacity,'" she said. They ultimately decided to terminate the pregnancy, and they're far from alone in making that decision.

In a data analysis of nearly 10,000 pregnancies carrying Down syndrome in Europe between 2008 and 2012, a study found that 53% had been terminated after prenatal genetic testing. CBS reports that between 1995 to 2011, the U.S. had an estimated termination rate for Down syndrome of 67%. Comparatively, the CDC reports that there were 200 abortions per 1,000 live births in the U.S. in 2013 — or nearly 17%, with or without genetic testing.

As Twitter will resoundingly tell you today: People with Down syndrome are not a disease to wipe out. But neither is genetic testing a scourge; to many, it's a gift of modern medicine.

And so this debate has also ignited both pro- and anti-abortion activists — to some, any restriction on access is one restriction too many; to others, lives are quite literally at stake. But for the question of how much genetic testing is enough, or too much, there can be no right answer. Undergoing testing at all — and making decisions based on the results — is intensely personal to each family going through a pregnancy. Anyone covering the news on these subjects would do well to remember that.

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