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this post was submitted on 04 May 2025
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Oh, no, the diagnosis isn't the bad thing, the process by which the patient received it is the bad thing. Genetic testing is a big decision, since it not only affects the patient's entire life, but also the lives of their family members. It's not something you want the patent to suddenly be informed of out of the blue without even fully understanding that they were being tested in the first place. This patient had no time to prepare for the possibility that she could have a high lifetime cancer risk, and didn't even know what that would mean until she already had the result.
This woman went from a normal college student with normal worries to someone who now has to worry about whether or not she wants to risk keeping her breast tissue to maybe one day breastfeed a baby, or simply feel like herself when she looks in the mirror. She has to think about whether she wants to have kids at all because they'd have a 50% chance of inheriting the same mutation. Every time she touches her own breasts for the rest of her life she's going to be scared that she feels a lump.
It's good that she got a diagnosis, but a lot of people choose not to, or at least choose to have it at a time when they're ready to focus on it, and this woman was denied that. She could have simply gotten more mammograms without testing right now, for example, because her family history put her in higher risk in its own. She wasn't even given a heads up that she might be thrust into this reality - the doctor was thinking about her physical well-being, but ignored her mental well-being. That's what the genetic counselors are supposed to be there for, but he ignored us, and the patent suffered for it. A woman walked into my office thinking everything was fine, and walked out with a world of worries on her shoulders.
I can’t imagine having to tell a young person they were a carrier for Huntingtons. That sounds like a brutally difficult thing to do.
Anecdotally - I’ve heard that a lot of genetics classes won’t have students test themselves, not just because “surprise! you are extremely likely to die of cancer” but also “surprise! you were assigned female at birth but are XY” wasn’t appropriate in a class. Can you speak to that?
That “do you really want to know” question is a lot harder than people think - I did 23andme a few years ago and found out that my mother had been lying about my father for almost thirty years. I was apparently enough Native American the entire time, I could have qualified for college scholarships :(
This makes sense! Thank you for explaining. As someone who works in the medical world, but in IT, I know of this position. Where I work they are called genetic counselors and are very sought after. So much so they were the first department to ever allow remote work because it was impossible to find a team local. I wanna say half the staff worked out of Canada as well. I knew the jist of what they did, but this shines even more light on it.