A New York Times report reveals prenatal testing for serious, deadly genetic conditions can get it wrong as much as 85% of the time. Worse, testing companies often promise “complete confidence” and fail to mention false positives in their brochures for doctors and parents–causing needless distress, heartache, and abortions of babies who are wanted and healthy.
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Panorama, Harmony and other fetal tests may have 85% false positive rate, according to New York Times
Though prenatal testing for Down syndrome is widely understood to have a high degree of accuracy, the New York Times reports the success rate for rarer conditions is much worse—in fact, “usually” wrong. In a review of data from top companies like Natera, Labcorp, Baylor Genetics, and Combimatrix, positive results were shown to be false as much as 85% for the following conditions:
- DiGeorge syndrome
- Cri-du-chat syndrome
- Prader-Willi and Angelman syndromes
- Wolf-Hirschhorn syndrome
- 1p36 deletion
Although over a third of all pregnant people in the US reportedly use NIPT tests, the industry is currently unregulated by the FDA. When asked about NIPT tests by the New York Times, a former director of the FDA’s division on medical tests said, “I think the information they provide is misleading.”
False diagnoses of DiGeorge Syndrome, Cri-du-chat and more leads to heartache, abortions
Many of the serious genetic conditions that NIPT tests claim to screen may cause high infant mortality, shortened life span, heart defects, intellectual disability, and more.
After a prenatal test gave a positive result for Patau syndrome, often fatal after the first week of birth, one mother recounted to the New York Times how she cried during an ultrasound, believing it was “one of the few times she’d see her child moving.” Though a follow-up test revealed the first test to be a false positive, it couldn’t undo the heartache and stress. “I wish that we would have been informed of the false positive rate,” she said to the Times. “I was given zero information about that.” Indeed, some genetic counselors say even doctors may not realize how “poorly” the tests work, according to the New York Times.
Tragically, the Times reports some parents went ahead with abortions after the false positives for grave conditions, before follow-up tests came back negative.
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