<p>@BunsenB they have not been shut down yet. But just in case, I grabbed my raw sequence data off the site for safekeeping as soon as i got it in case they do or my access to the site becomes limited for some other reason.</p>
<p>Calmom, thanks for digging. Since I have zero known Ashkenazi heritage (but it could be there, who knows) I need to investigate the different tests.</p>
<p>Another note for dragonmom:</p>
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<p>The information on this page - [Susan</a> G. Komen for the Cure | Understanding Breast Cancer | Risk Factors and Prevention | Testing for BRCA1 & BRCA2 Mutations](<a href=“http://ww5.komen.org/BreastCancer/GeneMutationsampGeneticTesting.html]Susan”>Genetic Counseling and Genetic Testing | Susan G. Komen®) - suggests that the testing is appropriate only for those with a family history of cancer.</p>
<p>I’d point out that the BRCA mutations can be inherited from the father as well as the mother, so even if you test negatively, it doesn’t rule out the possibility that a daughter can carry the gene. </p>
<p>So testing to benefit your daughters would make sense if there is a family history of cancer involving you or your side of the family – but otherwise wouldn’t be particularly informative as to them.</p>
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<p>Well, apparently the 23andme test will answer that question as well.</p>
<p>Re post #21 – 23andme does not appear to be at any risk of getting “shut down” because they are currently in the process of applying for FDA clearance. See:
<a href=“https://www.23andme.com/about/press/fda_application/[/url]”>https://www.23andme.com/about/press/fda_application/</a></p>
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<p>Not necessarily; at least for genealogy purposes, all it can tell you is probabilities. I understand that the goal may be different for medical purposes. There are some haplogroups that consist primarily of people with Ashkenazi (or Sephardic) Jewish ancestry, but none so far as I know that consist entirely of them. </p>
<p>Again talking only about genealogy, it’s not terribly useful, I find. Unless you happen to get lucky and find someone who’s a close enough match that you definitely share an ancestor in the last two or three generations, it usually isn’t remotely that specific about the degree of the relationship; instead, it’s usually something like “there’s a 75% chance that you and this other person share a common ancestor sometime in the last 400 years.” </p>
<p>But that’s true of me anyway with respect to almost everyone with Jewish ancestors from the particular parts of Germany where my family came from; the communities were small enough that almost everyone was related to everyone else. It’s far from the best way of tracing one’s ancestry, except very generally if you don’t even know in what region of what continent your ancestors lived in the last 500 or 1000 years. I did the DNA thing a number of years ago, and confirmed that my mitochondrial DNA haplogroup was one of the ones that are almost entirely Ashkenazi Jewish – which didn’t surprise me, because I’ve traced my ancestry back by the usual methods at least 200-300 years or more in most lines, and in 500 in one, and every single ancestor I’ve found was Jewish. But of all the hundreds of “partial matches” I’ve been notified of, there hasn’t been one person whose specific relationship to me I’ve been able to figure out, or whose families seem even to have come from any of the same provinces where my family lived in the last few hundred years. So it’s been interesting for me, but not terribly informative.</p>
<p>H’s MD said once about “boutique” full-body scanning clinics that have popped up in our state, “It makes it awkward for everyone.” Our bodies have many variations–most are harmless and don’t affect our functioning for our entire lifetimes. When you have testing/scanning, it can provide “false positive,” “false negative” or “concerns.” This can cause the person tested to have more testing/procedures about something of “concern” which showed up on the scan that would otherwise not have been detected and isn’t even harmful but just different in some way. It can also lull the person scanned into thinking everything is fine just because the level was below the detectable limit of the device used and should otherwise be follow up within a specified length of time.</p>
<p>The additional testing also gobbles up more resources–for the patient, healthcare provider and insurer as well.</p>
<p>Anyway, those are just a few thoughts about this issue. I have had a friend tell me I should get sequenced because I have some genetic mutation which my docs & I assume is causing my health issues but there is NO known treatment for it anyway (other than the symptomatic treatment I already take), so we can’t see any point in trying to get it pinpointed anyway. </p>
<p>Just more food for thought.</p>
<p>“So testing to benefit your daughters would make sense if there is a family history of cancer involving you or your side of the family – but otherwise wouldn’t be particularly informative as to them.”</p>
<p>Yep. Me at 35. My mom at 78. My sister at 58 with a questionable result. Quite frankly since my diagnosis I have assumed I carry a gene (known or otherwise) and have advised my daughters as such. I still worry that tagging one’s medical record with a genotype will come back to bite the grandchildren in the backside.</p>
<p>What DonnaL says is true – people who have Ashkenazi Jewish heritage do not get very useful results on 23andMe. They get too many cousin matches. I know 23andMe is aware of this and made some changes to the algorithm as recently as Aug 17.</p>
<p>For me, I have the opposite problem. Most of the users on 23andMe are from the US (though there are quite a few world-wide.) Since my grandparents came and settled in the US from Eastern Europe, I would not be expected to have a lot of close matches because fewer people there are using the service (though there are some!). Most of mine are still back there somewhere, and we have no contact with any of our relatives who stayed behind. I am finding fewer than average matches and mostly very distant ones. But it has still been interesting. I figure if I stay on long enough, a closer relative will pop up.</p>
<p>Regarding breast cancer, 23andMe tests for several other genes besides BRCA. These are more relevant for non-Ashkenazi people than BRCA on 23andMe. The two main ones are CHEK2 and FGFR2.</p>
<p>Before I forget, I should mention that before any humans in our family did 23andMe, we had our mixed breed dog tested with Canine Heritage [Canine</a> Heritage® Breed Test](<a href=“http://www.canineheritage.com/]Canine”>http://www.canineheritage.com/) Now when people ask me “What kind of dog is that?” I can tell them :-)</p>
<p>Calmom, re a qualified medical expense, I would hesitate to put it through insurance if I were anyone. Maybe it’s the cynic in me but do you want an insurance company ( any insurance company) be it medical, life or disability knowing your genetic makeup? What if heaven forbid it detected a fatal disease? Keep in mind that until the law changes, insurance companies are exempt from ant-trust laws ( thank you MCarren-Ferguson, NOT) and can talk among themselves about everything, including your history. I just wouldn’t want to take the chance that that they’d find a way to cancel the life insurance or disability coverage. There have been too many instances of this happening and not just anecdotal reports. Insurance companies don’t make money by paying claims, but by not paying claims. Professionally, I deal with health insurance companies on a daily basis and after 25 years, nothing shocks me anymore but I trust them as far as I can throw them, as my late father would say.
“Oh we never received your check on time and we cancelled your policy”. If I were going to do this test, I would pay with a money order purchased with cash and tweak the spelling of my name so that if the insurance company did get hold of the information, it is less likely to occur and maybe they can’t associate it with you. Just minimize the paper trail. You wouldn’t be doing anything illegal, just preventing somebody else from doing it.
Before someone raises Affordable Care Act (Obamacare), remember that only affects pre-exisiting conditions re health care, not other forms. The big insurance companies spend tens of millions of dollars lobbying and they have prevented the overturning of McCarren Ferguson by ‘donating’ to the campaigns of enough Congressmen to help prevent passage of legislation overturning it in each of the last few sessions of Congress…
rant over…</p>
<p>Janjdad – you misunderstood my question – I asked if it was a qualified medical expense for an HSA (health savings account). Insurance never sees payment from the HSA; no claim is filed. An HSA is a tax-exempt bank account funded by an insured person who also has a high-deductible health insurance policy – the idea is that there is enough money in the HSA to meet the deductible; the insured person gets lower premium and more flexibility. The HSA can be used to fund all sorts of things that aren’t covered by the insurance policy, whether or not an insurance claim is filed – but they have to be qualified medical expenses for IRS. </p>
<p>For example, I don’t have dental coverage but use my HSA to pay for dental expenses.</p>
<p>I am thinking that genetic testing done via some labs could come out of the HSA, but probably not for 23andme right now… but if I wait until they get FDA approval, maybe that will change. Kind of like the difference between prescription drugs (OK), and nonprescription, OTC meds (not ok). But I couldn’t find an easy answer online.</p>
<p>Mea culpa, I saw the “qualified medical expense” and immediately saw red missing the HSA part.</p>
<p>Re post #28 – I don’t know how many daughters you have, but I still think that if the goal is genetic screening for their sake, then it makes more sense for them to get the testing if and when they want to know. They already know that there is a family history of cancer-- but the fact that the cancer is on your side of the family doesn’t rule out them inheriting the gene from their dad. (Men rarely get breast cancer – so the absence of history on the dad’s side of the family means very little). </p>
<p>I think if I were in your shoes, I’d skip the medical testing – and let your daughters decide if and when they want testing. My own daughter had very extensive genetic testing through a research product affiliated with NYU — it was supposed to be free (and it was), but it turned out that they wanted to run it through insurance anyway, and it turned out to be a rather big hassle with the lab bills & the insurance. (Somewhere along the way paperwork got misdirected and my daughter was receiving calls from collection agencies for bills she never received and had expected to be paid by the project).</p>
<p>I’m not sure what, if anything, my daughter learned. She told me that she was negative for Tay Sachs – but I could have told her that, as both her father and I were screened before my first pregnancy.</p>
<p>Re post #30 – I also did a DNA test on one of my dogs… but the test was wrong. It came back showing one breed only, and the dog is clearly a mix.</p>
<p>Canine Heritage says it is going out of the doggie-DNA business, by the way, though there are other companies that do the same thing.</p>
<p>Regarding dog test – we did the test early on when they did not have a lot of breeds and it came up with just one also, but then, I think because we were early in the game, they let us re-test for a nominal fee and it came up with more. For our dog it made sense. We knew she was part Chow Chow because of her mottled purple and pink tongue. That did come up as a dominant breed (at the level of grandparent) with about 4 other more minor ones in the mix.</p>
<p>Calmom, thanks for validating my thoughts. I love my PCP but she gets off on these tangents. (like she is sure that current privacy laws will protect in the future…)
I have two daughters. We are all going on the assumption that there is a genetic factor, currently known or unknown.
Still may do the ancestory part of 23andMe…
Just got a batch of documents from a third cousin tracing my Dads side to 1812. Not sure when they got to Texas but certainly before statehood. Kind of wild to think about.</p>
<p>Of course, Genomeweb’s article on their 510(k) submission is a tiny bit more detailed than the comany’s own press release (which to me reads like a load of self-promotional BS):</p>
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<p>[23andMe</a> Submits Documents for 510(k) Clearance from FDA | GenomeWeb Daily News | MDx | GenomeWeb](<a href=“http://www.genomeweb.com/mdx/23andme-submits-documents-510k-clearance-fda]23andMe”>http://www.genomeweb.com/mdx/23andme-submits-documents-510k-clearance-fda)</p>
<p>I just think that it’s important to point out that there’s a difference between FDA “clearance” and “approval”. I only have a superficial understanding, but the main point is that “clearance” is easier to get than “approval”. Basically, 23andme would get “clearance” if they show that their “device” is substantially equivalent to another, already legally marketed device. </p>
<p>I personally don’t see much difference between the 23andme testing and an array of other home testing, such as home pregnancy tests. You certainly can argue the pros and cons of how someone handles the info gleaned from the tests, but the same arguments apply to other home medical tests that already are approved. Whether it is a good idea or not is a different question than whether the FDA will give it a pass.</p>