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by wizee 1631 days ago
The issue is that the tests portray themselves as being accurate (in the sense of low false positive rates), and portray the result as “your baby has XYZ rare syndrome” instead of “your baby has a 15% change of having XYZ rare syndrome”. If the test providers stated the false positive rate for their results more clearly, parents would be in a better position to make informed decisions.
1 comments

The larger issue as I see it is that the medical system around these screenings are not well versed in the statistics and able to communicate that to patients. "Eight [patients] 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." It's hard to know what happened in the room when the doctor spoke with them or what was on those particular patients tests, and that's (one hopes) the worst medical news those people will receive for a long time so listening comprehension is understandably impaired, but there needs to someone available who can help them interpret, even days or weeks later, and these people were let down by the entire system, not just the test manufacturers.