Either insurance won't pay; they've spent too much already; or, they assume insurance won't pay because no one recommended it. To me, this is especially bad for us. Chordoma is weird. The information is hard to use if you're not an expert or well-versed in statistics.
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In fact, the results of those tests have almost 0 relationship to cancer risk, difficult decision making, or anything at all (except finding out you may be 2.5% from Iceland).
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Not sure if that was to the first tweet or rest, but yep :/
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For example, this study found that "people with the A version of the brachyury gene are just over five times more likely to develop chordoma than the general population." This is really important for research!
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But, reading this, lots of patients were talking about having their kids tested for it. The incidence rate of Chordoma is 0.08 per 100,000. The A version gives a likelihood ratio of 5:1.
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I'm not a genetic counselor or in the medical field, but I do know that people would and DID wildly misinterpret what a positive test means. And, instead of doing so with someone to hold their hand and correct them, they did so alone, after reading a report.
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