23andMe personal genetic testing

I don't have a good answer to this question, but here it is:
Would you want to know about it if you thought there might be a fix or a cure for it during the next 20 years?
My personal answer was "Oh yes."

Sure, I would agree....but do I want to know now or do I want to know when the fix/cure exists? That is, is there a case to be made to test this at a time when whatever you find out might actually impact what you do or don't do?

I'm not sure of the answer to that. Need to do some research on this and decide. I had thought about doing the testing when you brought it up a few months ago but thought it was a little pricey. I'm more likely to look into it seriously now.

An interesting recent article I turned up that talks about the negatives of testing and the one big upside:

http://www.forbes.com/sites/stevenk...nter-of-the-personalized-genomics-revolution/
 
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For some reason I can't figure out if the results are private. I see mention of GINA but there is the disclaimer that life insurance companies can use the data.

I'd like to do this testing but don't want to shoot myself in the foot either. If I need to renew my life insurance policy or buy a new one I wonder if there would be a question about genetic testing. hmmmm
 
Nords, do you have any financial interests or ties to the company 23andMe?
I wish I did. But I do not.

If I'd seen this presentation at an angel investor's meeting 5-10 years ago I would've thought that these guys would limp along on federal research grants for years and eventually sell out to big pharma (or big insurance) at minimal gains. I don't know enough about the skills of the execs (not the techs but the execs) to know if they can carry the company to profitability (or sell out for huge gains) but that would probably be the key factor.

I'm interested. Where is this blog? :)
It's The-Military-Guide.com, and I'll post here when I've written the post for the blog, but I haven't written it yet. It'll be another week or two. Three tops. No more than four at the outside.

The 23andMe website also has a forum which I need to explore more.

Sure, I would agree....but do I want to know now or do I want to know when the fix/cure exists? That is, is there a case to be made to test this at a time when whatever you find out might actually impact what you do or don't do?
I'm not sure of the answer to that. Need to do some research on this and decide. I had thought about doing the testing when you brought it up a few months ago but thought it was a little pricey. I'm more likely to look into it seriously now.
Here's another thought.

The test claims that I'm hypersensitive to a couple of drugs that are used for chemotherapy. In other words if I contract a certain kind of cancer and then start chemo, the first dose would probably risk my health if not kill me. You'd think that an oncologist (or a chemo clinic) would screen for it. But they also say "Hey, Nords, are you allergic to any medications?" If I ever end up with this type of cancer then I think I'm happier knowing about this hypersensitivity before I make a chemo decision.

I've seen stats that 90% of cardiac patients (after stents and other surgery) still never make the necessary lifestyle changes-- stopping smoking, let alone losing weight. But I've learned that some lifestyle changes (annoying but not too unreasonable) will help me keep going for another few decades while medical science works on the solution. Now that I know, I'm motivated to make these changes.

I guess it also depends on the type/degree of the lifestyle change. I'd find it very easy to give up broccoli, too, if that was necessary. Every time I see a cold, frosty beer my muscles start a reflex grasp response-- then I think of all the other ways my body responds to alcohol now and I'm pretty sure that my drinking days are behind me. However I'd have a hard time giving up chocolate.

An interesting recent article I turned up that talks about the negatives of testing and the one big upside:
What Is 23andMe Really Selling: The Moral Quandary At The Center Of The Personalized Genomics Revolution - Forbes
I'd like to read the article that the guy writes AFTER he's read his genetic profile, not before. Hard to tell from this article whether or not he's a parent, too.

I like his crowdsource analogy. And for $50M, it's far cheaper than most government-funded research programs. Thanks for the link.

For some reason I can't figure out if the results are private. I see mention of GINA but there is the disclaimer that life insurance companies can use the data.
I'd like to do this testing but don't want to shoot myself in the foot either. If I need to renew my life insurance policy or buy a new one I wonder if there would be a question about genetic testing. hmmmm
They're as private as the Internet can be! It's probably the same policy as Facebook-- anonymous demographic data with no personal information.

I agree that this is an issue. One of the reasons I can write about it is because (I think) I'm relatively shielded from being denied health insurance or long-term care insurance. Another issue to research.
 
Has anyone else here done 23andMe? Care to share your thoughts on the process and the fees?

I've done it. I wanted to know whether I had the APOE variant for Alzheimer's. It was worth the $299 price I paid at the time.
 
I am interested in this testing, if
- I get a clear info on how the results are handled, stored and shared.
- If they will give me the raw data of my samples (My PhD was based on similar work)

Anyone knows on this aspect, especially those who have been through. I guess, I could call their customer support but they will give me the answers I want to hear.
 
I am interested in this testing, if
- I get a clear info on how the results are handled, stored and shared.

You probably want something more detailed, but this covers much of it:
https://www.23andme.com/about/privacy/

- If they will give me the raw data of my samples (My PhD was based on similar work)

In the "Account" menu there's an option "Browse raw data". And in that window there's a "download raw data" link. I just downloaded my genome and had to jump through some security hoops, which is good. It's a zip file that contains a 25MB txt file, TAB-separated. Each line corresponds to a single SNP. For each SNP, they provide its identifier
(an rsid or an internal id), its location on the reference human genome, and the genotype call oriented with respect to the plus strand on the human reference sequence. They are using reference human assembly build 37 (also known as Annotation Release 104), whatever that may mean. The format looks like this:
# rsid chromosome position genotype
rs4477212 1 82154 AA
Etc.
(sorry, the tabs were somehow lost when posting this)
 
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My wife & I got our kits yesterday. We'll send them back out tomorrow and await the results.
 
At $299, it was too pricey. At $99, it seems like a good deal. I signed up this morning, probably have the kit later this week. I'm curious to see how the results align with my expectations.

DW is still deciding if she wants to know...
 
Does anyone know if this test would be considered a qualified HSA health care expense?
 
I did the National Geographic's Genographic Project a few years ago. It just tested about a dozen markers known for mutations in large geno groups. My clan came down from northern Europe into Scotland, England and France. Interesting, but not too useful really.

I receive periodic contact information of people with similar data, and actually located a cousin. He was descended from my G-G-grandfather's first wife. I'm from the second wife. But he did the complete 23ANDme thing. He wanted me to do it too, but $299 was a show stopper. But at $99, maybe so.

He sent me some of the data from his test, but it was meaningless to this old engineer. Perhaps if he'd also sent the instructions for reading the data..hum.

Nords, I'm always interested in your perspective, so let us know when the blog posts are up.
 
Bumping up this thread. I would be interested to know if anyone tried this genetic testing service and whether the results are useful to them. Thank you.
 
Our samples are in the lab as of a week ago. I'll post our thoughts after we get the results.
 
Just got my health results. The ancestry stuff will come in later. My wife's results are a little behind me, even though we sent in our samples at the same time. So far the health results look pretty interesting. Lots of data to look through!
 
Just got my health results. The ancestry stuff will come in later. My wife's results are a little behind me, even though we sent in our samples at the same time. So far the health results look pretty interesting. Lots of data to look through!

Do you feel it was worth the 99 big ones?

DW and I are looking into this also. We figured it could provide some insight into family genetics as 3 of 4 of my grandparents died at a young age. All were heavy drinkers and smokers, so I don't know what long term problems lie within the family.
 
Do you feel it was worth the 99 big ones?

I think so, although I don't fully understand how accurate these results are yet. Some indicators have high confidence but the majority seem to be based on study groups so they may or may not be accurate at all. My highest health risk is something I always suspected based on family history but it's nice to see it confirmed by genetics. But it's a disease that has pretty equal weighting between genetic factors and environmental factors.
 
timeasterday said:
I think so, although I don't fully understand how accurate these results are yet. Some indicators have high confidence but the majority seem to be based on study groups so they may or may not be accurate at all. My highest health risk is something I always suspected based on family history but it's nice to see it confirmed by genetics. But it's a disease that has pretty equal weighting between genetic factors and environmental factors.

This is very interesting to me, and I enjoy the comments on it. But for now, me personally , I would just prefer an autopsy on me at 85 with them commenting "How did this guy live so long with all these undiagnosed diseases?"
 
Nords, I'm always interested in your perspective, so let us know when the blog posts are up.
Bumping up this thread. I would be interested to know if anyone tried this genetic testing service and whether the results are useful to them. Thank you.
Took me a long time to get through it and write it up, but it's posted:
23andMe genetic testing

To clear up a couple of points in my earlier posts on this thread, Congress has legislated federal protection of genomes for health insurance and employment. In other words, health insurers and employers are not allowed to discriminate against you in those two areas-- for whatever that's worth. The legal reference link is in the blog post. Thanks to all those of you here who got me started on the research.

There is no legal protection (that I'm aware of) of one's genome for long-term care insurance, disability insurance, or life insurance. If an insurance company wants to spend the money to analyze your genome and decline coverage, then they're within their rights. Of course they could also charge you a risk-based premium, too. Or you could hope that they'd offer you a discount for a higher-quality genome.

I've always wanted to be fully informed of my health info, even if it's adverse. This genetic testing only reinforced that confirmation bias. Consider that context as you read the following paragraphs.

If you're contemplating starting a family, get your genome analyzed. Simple as that. Don't cheat yourself. $99 is a freakin' bargain. I don't give a crap if you're descended from Methusaleh and The Highlander, because you never know what other surprises you're hypothetically capable of passing on to your hypothetical kids. I understand this is a controversial stance for at least one or two posters here, and I'm not going to offer any advice on whether you'd decide to have kids (or not) as a result of the testing. I'm merely suggesting that foreknowledge allows you to prepare yourself mentally (and financially) for parenthood. And, if you're a spiritual person, for focused prayers. But of course if you're a parent then you're already praying.

In my case, I turned out to be a carrier for cystic fibrosis and hemochromatosis. Nobody on either side of my family tree, going back at least five generations, ever said a word about either of these. (They might not have even known.) Yeah, those genes are double recessive and the first is fairly apparent, but it's possible to not show the latter symptoms for years. Who knows what dark secrets are lurking in the heart of your genome (even 23andMe only analyzes a fraction), but I wouldn't be willing to take a 25%-50% risk of inflicting my carrier disease just for the sake of having descendants. Even worse, last month I learned of at least one (very distant) relative who's barely entering adulthood with CF and is currently facing a 10% copay on a $750K double-lung transplant. I suspect that their parents would've happily ponied up a lot more than $99 for genetic analysis if it had existed before they started their family. If I'd had a genetic profile before I procreated in 1992 then I would've wanted some form of fetal testing as well. I think my spouse would've concurred with that pregnancy risk, assuming she would've even proceeded to procreate with me in the first place.

23andMe confirmed that my daughter is indeed my daughter. (Or at least 85%.) But she's suspected that all of her life (and that's what her mother told her), so she's already at peace with the confirmation.

On a more serious note, I have only disclosed my Alzheimer's genetic analysis to my spouse, my daughter, and one other close friend. Based on their advice (and because you can't un-share) I'm not ready to discuss that any further. I'd rather that my writing be judged on its own merits, such as they currently are. I'll continue to write on that subject from time to time, although Bob DeMarco and his co-authors do a much better job over at the Alzheimer's Reading Room.

Break. Different subject:

I think that this wraps up my final thread. (If you disagree, please contact me to let me know what other thread needs my update.) A couple of my long-time threads (like the book and the "covering a mortgage" analysis) will continue to update on the blog. Blog posts go up on Monday/Wednesday/Thursday mornings, or you can subscribe in a RSS reader, or you can subscribe by e-mail.

I'll never say never(!), but I don't currently plan to start any more threads on this site. I've subscribed to a few threads (vBulletin might alert me if they're updated), and I may drop by occasionally to search on a keyword or to use the FAQ Archives. I've built up a pretty good reference library here over the years and I'll continue to use it as long as it's available.

I plan to do [-]more surfing[/-] most of my writing on personal finance blogs and military sites, and eventually another book or two. I moderate the Military Family Finances forum at Dollar Stretcher. As several of you already know, I'm also occasionally active on the Mr. Money Mustache forum.

The best way to reach me is by PM or e-mail. (Or feel free to leave a blog comment!) I have a Twitter account and a Facebook page for the book and a Linkedin profile. I respond to all of them, but I'm happiest to answer questions on military personal finance-- especially if the answer leads to a blog post and could be used in a book. (I'll keep your identity anonymous because your story/advice appeals to more readers when they can't discern your service or rank.) Guest posts are certainly welcome, too, because readers respond well to personal stories and "I learned from..." advice. If you've never written a guest post before then give me a couple paragraphs and I'll take it from there.

As always, your contribution to my writing means that you get to vote on which military charities get the revenues. Mahalo.
 
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Nords, thanks for posting this. I have always enjoyed reading your posts (long time reader, but seldom poster here). This topic is of great interest to me. When I first heard about this I thought...cool, I should do that...would love to know how much of a Neanderthal I am!

So what is stopping me? Well, a biggie is long term care insurance. My mom had Ltc insurance, paid into it for years and never had to use it (fortunately). As her executor I spent hours getting a refund of unearned premium...she had paid for the year and since the premium was so hefty it was worth the effort and time to get the refund.

Another caution with this thread is thinking about potentially unpleasant results. What if the unpleasant results point to something not preventable/treatable? I would like to think that I would deal with that rationally and use the info to manage the genetic hand that has been dealt to me.

Also, I would like for DH to consider getting tested, but I have the same concerns for him and perhaps even greater concerns. His one grandpa did end up with dementia and needed nursing home care. DH has already lived longer than his father and his other grandfather lived.

So yes, I first thought that I would do this and get some interesting ancestry info plus be told I have great longevity genes. Now I realize I need to more carefully consider potential results.
 
Thank you for everything Nords. You have contributed a great deal to this forum over the years. Best of luck with your writing "career"!
 
Nords,
I'm sorry to see you surfing off into the sunset.

I personally got GREAT value from your experiences with guardianship of your father. Since that is something we're in process with, with my in-laws, it was very helpful to get actual experiences to at least give us a clue where to start.

Thank you so much for sharing your personal story of this.
 
Onu 26+K posts
Planny ono yeah now
Olu olu fo'shua
mo bettah onshore wind come back talk story hana hou
Shoots

Mahalo
 
I've not been on this site in a year, and the day I come back, the awesome Nords announces his departure? I guess I'll need to tune-in on the other sites for the wisdom I've come to expect. Thanks for all of the posts!

--Dale--
 
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