u/sarcazm107

I had a phone appointment with a genetic counselor today to go over the first of two genetic tests I did - luckily covered by insurance - through JScreen after passing their questionnaires regarding my ethnic background, family and personal health histories, and a few other things. The tests were done through Myriad Genetics: 1) BRCA and Hereditary Cancer Risk Screen (why I wanted to do this in the first place since I couldn't get anyone to do a BRCA test for 5 years of various doctors and myself trying - though this tests for a much larger amount of genes) 2) Women's Health Foresight Carrier Screen.

The call did not go well. The genetic counselor was supposed to be going over the Women's Health Foresight Carrier Screen Results, which picked up multiple rare diseases I already have, a couple things I was unaware of but may or may not be symptomatic for, and missed things that weren't being tested for but also missed things it should have due to not testing the intron mutations, setting the VAF% too high, and various other reasons. That is at least logical though, even if I don't like it.

What isn't, and what makes me want to scream, is having the genetic counselor spend the majority of her time on the phone with me telling me the results don't matter because I'm not planning on having a baby and my age the fact that I had a hysterectomy due to cancer makes the results irrelevant so I shouldn't concern myself with them. This is a WOMAN by the way. People seem to think these attitudes prevail towards male health providers but not in my experience they don't.

I WANT TO SCREAM!!! I AM NOT A FRIGGIN' INCUBATOR!!!

MY GENES are relevant to MY HEALTH. This is not a test meant to rule me out for Eugenics purposes because my genes disqualify me from participating as a Handmaiden being used to help bring about Nietzsche's Ubermensch. GRAAAAH!

Has anyone else in the USA ever utilized this resource/company before to try and get WGS and possibly metabolic/proteomic profiling done in order to get involved in some sort of research study or registry (likely to be used for biopharma purposes and drug development or academic research)? I'm curious because they're in Germany but the protections and purpose seem to be closer to what we were doing about 15 years ago and they seem to take a special interest in people with multiple founder effect mutations in endogamous ethnic groups like myself while possibly also looking at the information more holistically as opposed to a strictly Mendellian PoV, with a lower VAF%, more research into introns, polymorphisms, and so on.

I ask because my JScreen results came back from Myriad genetics and I just caught 2 more founder effect mutation "Pokemon" to add to my ever-expanding list and as far as clinical significance goes standard tests and rules don't account for anomalies like myself and others in similar situations even when testing specific isolated populations with genetic bottlenecks as a general rule.

If anyone has any tea, please feel free to spill. Thank you!

I'm not sure if a tag is necessary for this as I'm not sure if it is across all SSA or not.

When I log into my account and check my monthly gross benefits it has always been in both dollars and cents. My monthly Medicare Premium deduction is also in dollars and cents. However, when I go to the top of the screen to look at a Benefit Verification Letter it rounds up the total monthly gross benefits rounded up to the nearest whole dollar, Medicare Premiums are in dollars and centers, and it gives my monthly deposited benefit and says it must round down to the nearest whole dollar to get that math.

Does anyone know why the information on the actual account and BVL is different when it comes to rounding as opposed to just giving the actually accurate information on the BVL and then still adding that disclaimer about rounding down (like when Medicare deductions and monthly benefits don't zero out as they sometimes don't)?