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NY Times: Prenatal tests for genetic disorders are inaccurate about 85% of the time

NY Times: Prenatal tests for genetic disorders are inaccurate about 85% of the time

Written by Timothy Benton and John Sexton

This story is interesting for a couple of reasons. The first is the topic itself. The NY Times has looked closely at several prenatal blood tests designed to show if a developing baby has one of several genetic abnormalities. These tests were initially designed to detect Down syndrome, but over time testing companies have claimed their tests can detect other, rarer genetic problems known as microdeletions. However, the analysis by the Times found that in the vast majority of cases, the results offered by these tests are false positives.

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It is clear some of the tests are in widespread use. One large test maker, Natera, said that in 2020 it performed more than 400,000 screenings for one microdeletion — the equivalent of testing roughly 10 percent of pregnant women in America…

The analysis showed that positive results on those tests are incorrect about 85 percent of the time…

Some said the blood screenings that look for the rarest conditions are good for little more than bolstering testing companies’ bottom lines.

“It’s a little like running mammograms on kids,” said Mary Norton, an obstetrician and geneticist at the University of California, San Francisco. “The chance of breast cancer is so low, so why are you doing it? I think it’s purely a marketing thing.”

When contacted by The Times about the results of this analysis, several of the largest companies refused to be interviewed. A pregnant woman who receives a positive on one of these tests should have a follow-up test to ensure the results are accurate. However, those follow-up tests require a large needle to collect amniotic fluid and include a small risk of miscarriage. They are also expensive, several times more costly than getting an abortion. So, in reality, some women choose to have an abortion without a follow-up test.

A 2014 study found that 6 percent of patients who screened positive obtained an abortion without getting another test to confirm the result. That same year The Boston Globe quoted a doctor describing three terminations following unconfirmed positive results…

In interviews, 14 patients who got false positives said the experience was agonizing. They recalled frantically researching conditions they’d never heard of, followed by sleepless nights and days hiding their bulging bellies from friends. Eight said they never received any information about the possibility of a false positive, and five recalled that their doctor treated the test results as definitive…

Genetic counselors who have dealt with false positives say some doctors may not understand how poorly the tests work. And even when caregivers do correctly interpret the information, patients may still be inclined to believe the confident-sounding results sheets.

The Times spoke to a 25-year-old woman named Cloey who received a positive showing her baby has Patau syndrome or trisomy-13, which is usually fatal within days of birth. In her case, Cloey’s doctor told her that the tests were wrong more than 90% of the time, but even so, she found herself expecting the worst. After additional tests, she learned the blood test was a false positive. She told the Times,” I wish that we would have been informed of the false positive rate before I agreed to the test.”

I mentioned this story was interesting for a couple of reasons. The other one is that the co-author of this story is Sarah Kliff. You may not remember her from her days at the Washington Post, but she was their health policy reporter for a while and, while there, refused to write anything about the Kermit Gosnell trial because it was just a “local crime” story.

The idea that the man who may be the most prolific serial killer in history, whose crimes were abetted by pro-abortion policy and politicians in Pennsylvania, wasn’t worth covering as anything but local news struck many of us as the time the very worst kind of progressive gaslighting. Mollie Hemingway, who asked Sarah Kliff the question back in 2013, wrote this appropriately snarky take on Kliff’s response:

So when a private foundation privately decides to stop giving money to the country’s largest abortion provider, that is somehow a policy issue deserving of three dozen breathless hits. When a yahoo political candidate says something stupid about rape, that is a policy issue of such import that we got another three dozen hits about it from this reporter. It was so important that journalists found it fitting to ask every pro-lifer in their path to discuss it. And when someone says something mean to a birth control activist, that’s good for months of puffy profiles.

But gosh darn it, can you think of any policy implications to this, uh, “local crime” story? And that’s all it is. Just like a bunch of other local stories the Washington Post also refuses to cover – local crimes such as the killing of Trayvon Martin and the killing of Matthew Shepard and the killing of students at an elementary school in Connecticut. Did the Washington Post even think of covering those local crime stories? No! Oh wait, they did? Like, all the time? Hmm. That’s weird. But did they cover them in terms of policy implications? Asking politicians for their views and such? Oh they did that, too? Hmm. So weird. Oh, and Sarah Kliff herself wrote one of those stories? Well, gosh, I’m so confused.

And what policies could possibly be under discussion with this Gosnell trial? Other than, you know, abortion clinic hiring practices? And enforcement of sanitary conditions? And laws on abortion practices that extend to killing live infants by beheading them? And the killing of their mothers? And state or federal oversight of clinics with records of botched abortions? And pain medication practices? And how to handle the racist practices of some clinics? And how big of a problem this is (don’t tell anyone but another clinic nearby to Gosnell was shut down this week over similar sanitation concerns)? And disposal of babies’ bodies? And discussion of whether it’s cool to snip baby’s spines after they’re born? And how often are abortion clinics inspected anyway? What are the results of inspections? When emergency rooms take in victims of botched abortions, do they report that? How did this clinic go 17 years without an inspection? Gosh, I just can’t think of a single health policy angle here. Can you?

So it’s interesting that the person who ignored the Gosnell story (for obvious reasons) is now writing a story. One implication is that some women are aborting perfectly healthy babies because biotech companies are trying to profit from inaccurate tests. Granted, Kliff and her co-author don’t devote a lot of time or space to considering that, but they do at least mention it, which is more than Kliff did with the Gosnell case.

Cross-posted from Hot Air

Notes from the Editor

This subject holds a special place in my heart because I have a son with special needs, which would cause some couples to abort if they had done genetic testing on their fetus and found them to have what my son has.

My son has a condition known as Williams Syndrome; it is genetically caused by affecting the same genes that Down’s Syndrom Children are missing, only half of each gene.

They used to call it elfism because my child looked like an elf when he was a baby. I know some may think it is terrible, but I used to dress him up as an elf when he was a baby; he was so cute, could not help myself.

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Children with this are very outgoing, love to talk, and carry on conversations very well. But they have a hard time understanding personal space, have issues with separation anxiety, and are one of the most loving children in the world. Some call it the hugging disease because of their condition; they overproduce oxytocin, which causes them to fall in love with everyone they meet. They naturally want to hug everyone.

To find out this testing has a fail rate it does, one has to ask, “How many children have lost their lives because of a faulty test?” Further, do we have the right to act as G-d and take the lives of little ones because they may have a problem when they are born?

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About The Author

Timothy Benton

Student of history, a journalist for the last 2 years. Specialize in Middle East History, more specifically modern history with the Israeli Palestinian conflict. Also, a political commentator has been a lifetime fan of politics.

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