23andMe personal genetic testing

[Nords]

We've had a few threads on this board about medical testing and insurance information.

Some of us would prefer to know whether or not we have a PSA that could indicate prostate cancer, even if it's a false positive and the biopsy's dangerous and the radiation's hazardous and the excision is worse and the cancer's moving too slow to kill us. Since my Dad's already been through a prostatectomy, I'm a big fan of early warning. But others are just as adamant about preferring not to know.

Some of us would prefer to know our full medical/genetic profiles, but we'd be very unhappy if that information ended up in the hands of our insurers (health, long-term care, and life) or our employers. By remaining blissfully ignorant we keep others from being malevolently informed. In my case I don't have to worry about Tricare or the Federal Long-Term Care Insurance Program messing with my premiums-- or at least, not messing with me more than they'd mess with everyone else. I certainly don't have to worry about workplaces. Again I'm a fan of early warning.

My spouse and I (especially me) have ancestry indicators that should make our daughter concerned about having kids of her own. (No matter how brilliant, talented, and attractive they will turn out to be.) That's probably true for everyone, but now we can do something about it.

23andMe, the personal genetic testing startup, has just scored a major venture capital round. As part of their customer growth (so that they can sell "anonymous" data to researchers) they've dropped their fee from $299 to just $99. We three Nordmans spit into our test tubes over Christmas break, and now the results are rolling in. The reports are too lengthy and detailed to be absorbed at one sitting.

I'm going to blog about the process, and I have some decisions to make on how much of the results I care to share. 23andMe has confirmed that all three of us are going to die someday, but now we can worry about it more constructively. Or not. Let's just say that I'm past "fear/anger/denial" and deeply into "bargaining". I'll probably never achieve "acceptance".

Has anyone else here done 23andMe? Care to share your thoughts on the process and the fees?

Would you care to share your story (either in this thread or via PM/e-mail) for The-Military-Guide.com, either by name or anonymously?

I have a choice of sharing some, all, or none of my personal results on my blog. Once I make that choice, it's tough to change it. If you've shared the results of your testing already, is there anything you'd do differently-- or not do at all?

 

[braumeister]

I can appreciate the "simple curiosity" aspect, and I admit to having plenty of curiosity about my own background. But I keep coming back to the "so what" problem. There's nothing you can do about your genetic makeup, so what difference does it make, beyond giving you something to worry or not worry about?

 

[timeasterday]

This is something I have wanted to try. Just ordered two kits for me & my wife.

 

[rodi]

I paid out of pocket for specific genetic testing. Specifically the BRCAA gene.
Cancer runs rampant in my family. 3 of 4 grandparents died of cancer. My mom died of ovarian (hence the brcaa test), my dad beat prostate cancer, but then died of complications of multiple myeloma. My brother beat melanoma, then was brought down by an obscure horrifically aggressive neuroendocrine carcinoma. (Not to be mistaken for the less aggressive and more common carcinoid version.)

My brother oncologist suggested I get tested. I concurred. My insurance didn't cover it.

Additional family history - a cousin, who at the time had beat prostate cancer. He's since in treatment (and looks positive) for a bout of testicular cancer. He's my age.

It's the multiple malignancies (vs metastases) that made me worry about genetics.

Fortunately, I'm clear of the BRCAA gene. (YAY!) So my odds are the same as every other female my age. I am a big believer in active screening - and my doctors concur - I get more screens (mamograms, paps, and ca125 blood work) than is typical, but it's warranted given my family history. I'm also on the frequent "probing" due to polyps discovered 10 years ago.

This risk is a big factor in my desire to retire early. Neither of my parents had their planned retirement. Mom was dx'd 3 years after she retired at 62. Dad spent a good chunk of his retirement caring for mom and dealing with prostate cancer treatments (radiation, surgery, etc.)

 

[RAE]

I can appreciate the "simple curiosity" aspect, and I admit to having plenty of curiosity about my own background. But I keep coming back to the "so what" problem. There's nothing you can do about your genetic makeup, so what difference does it make, beyond giving you something to worry or not worry about?

Yes, I generally agree. My family has had its share of early deaths due to cancer, heart disease, alcoholism, and more. But when I look at how many of them lived their lives (heavy smoking, drinking, poor eating habits, etc), it's not really all that surprising to see how things turned out for them. All I can do is to try to take care of my health as best I can (through diet, exercise, etc), and after that, whatever happens, happens. No point in getting stressed out worrying about it.

 

[Tigger]

I've had three DNA tests so far and the one from 23andme was the most recent and the most interesting one.

A lot of info came out of it, but in my case nothing shocking or very useful.

According to the results, my main genetic health risks are psoriasis (no known cases in my family) and Alzheimer's (my grandmother had it). I was already keeping an eye on info about AD's before.
It looks like my hair loss is not coming from any known related genes, but I have no clue what to do about it.
I've also learned that I don't have an above average genetic risk of getting addicted to heroin, but I have no plans to experiment with that.

Even though for me it hasn't proved very useful so far, for many people such a dna test could be a lifesaver. I recommend ordering one, even though in the future tests will probably provide much more actionable info than today. And I look forward to your writings about it... who knows, maybe they will help me get some better use out of my own results.

 

[Katsmeow]

I am really, really undecided on this.

I have only limited genetic and ancestral information. I am adopted. I have found my birthmother and have contact with her so I know that side of the family and nothing gives me huge concern.

However, I know nothing about the paternal side. My attempts to find my birthfather have failed and my birthmother doesn't know anything about his side.

So I am very interested in any ancestry information (more limited for me as a female than what males can get) and am interested in health information since I have so little.

The big issue for me is that I know that one of the tests that they run is the ApoE4 test for Alzheimer's risk. I am not that concerned from the maternal side (birthmother is very sharp in her mid-80s). However, I know nothing about the paternal side.

Basically I am not sure that I want to know about ApoE4. I know I could get the results and just not look at that one. But, I also know me. If the test is run and the results are there I think I would likely look at them.

I really want the other results....just not that one. I would be interested in doing the testing if I could have all the other testing run but not that test.

I don't think you can do that though so I remain undecided.....

 

[Animorph]

For $99 I'm interested, but when new DNA links are found will I need to be retested? A full map that I could reference when new links are found would be cool.

 

[photoguy]

The thing I wonder about is how they control the false positive rate. I.e., even if a test is 99% accurate, your probability of actually having the disease (or gene/mutation) could be substantially lower than the test accuracy (e.g. Medical False Positives and Conditional Probability / MATH200 (TC3, Brown) ). I suspect they may end up with the same problem as breast cancer mammograms and potentially cause more harm than good.

Also their tests seem to have very limited coverage. For example, on their website they say "Please remember that the BRCA mutations covered by this report are only three of hundreds in the BRCA1 and BRCA2 genes that can cause cancer." Granted one should not expect the 23andMe test to be as comprehensive as a dedicated test, but this seems so low as to be not useful.

On the positive side though, I'm surprised that the tests have come down so much in cost. I remember discussing gene chips with collaborators and them talking about costs in the 1000s

 

[UnderTheRadar]

Nords, thanks for consideration of posting. I am interested to read more about your results (not specific) - just the overall description of the information you receive.

 

[W2R]

I can appreciate the "simple curiosity" aspect, and I admit to having plenty of curiosity about my own background. But I keep coming back to the "so what" problem. There's nothing you can do about your genetic makeup, so what difference does it make, beyond giving you something to worry or not worry about?

+1

My thinking is along these lines, also.

- - If I found a high probability of a genetic issue, I could worry about it and it might never happen. At any rate, I do not see what I really could do about it.

- - If my genetic test showed no issues at all, I might be tempted to skip regular screenings like mammograms and colonoscopies. I suspect that that would be a negative result from taking the test.

 

[Nords]

However, I know nothing about the paternal side. My attempts to find my birthfather have failed and my birthmother doesn't know anything about his side.
So I am very interested in any ancestry information (more limited for me as a female than what males can get) and am interested in health information since I have so little.
The big issue for me is that I know that one of the tests that they run is the ApoE4 test for Alzheimer's risk. I am not that concerned from the maternal side (birthmother is very sharp in her mid-80s). However, I know nothing about the paternal side.
Basically I am not sure that I want to know about ApoE4. I know I could get the results and just not look at that one. But, I also know me. If the test is run and the results are there I think I would likely look at them.
I really want the other results....just not that one. I would be interested in doing the testing if I could have all the other testing run but not that test.
I don't think you can do that though so I remain undecided.....

I've learned some policies. The results are still coming in for all three of us so more info may pop up in the next few weeks.

My daughter was told that they don't have any Y chromosomes to work with in her sample, and they advised her to go ask her Dad about heritable risks from that side of the family. (She's back at college so we're doing this via e-mail.) The 23andMe site has a "sharing" feature where you can open your whole account to someone else (who also has to have a 23andMe account) or just share parts of it. So my daughter is now learning everything about me that 23andMe has been able to learn.

Presumably 23andMe is using the Google+ version of "sharing" and not Facebook's version. (Snarky geek tech humor. A 23andMe founder is married to a Google founder.) However 23andMe warns you that if you share then the other person can learn, and they might be able to share with someone else, and then the cat's out of the bag.

They understand that there are things about yourself which you might not care to know, and they leave that choice in your hands. When you view your results page on 23andMe, it's just a summary. They tell you that they have your genetic info on Alzheimer's, Parkinson's, breast cancer, and a few other issues. You have to dig to get it. You have to start clicking on "unlock" & "acknowledge" buttons for several layers before you get to the bad news.

For $99 I'm interested, but when new DNA links are found will I need to be retested? A full map that I could reference when new links are found would be cool.

This is the neat thing about the VC funding. They want 23andMe to ride that data until it's exhausted so that it can be resold to medical researchers. Whether you care or not, every new analysis technique means that your sample will be re-run through the sequencer to help out Mayo or Johns Hopkins or someone else. It's even possible that 23andMe may hunt you down for more samples. Your account will ideally keep adding new info as they learn about it.

I can appreciate the "simple curiosity" aspect, and I admit to having plenty of curiosity about my own background. But I keep coming back to the "so what" problem. There's nothing you can do about your genetic makeup, so what difference does it make, beyond giving you something to worry or not worry about?

Although you can't change your genetic makeup (yet), I find that it's still oddly comforting to know the information. There are some lifestyle choices that may not be very popular or easy to implement when you read about them on the Internet, but if they help counteract a genetic tendency then you suddenly have all sorts of motivation to make the change.

Genetics may load the gun, but now I can keep my finger away from the trigger. I've worked through fear, anger, and denial pretty quickly-- but I plan to stay in "bargaining" for the rest of my life.

Here's another aspect to consider, one that I learned from my submarine patrols: people want to know information so that they can pray for those who are affected. I'm not big on the power of prayer, but I can certainly understand the feelings of those who are.

 

[Katsmeow]

My daughter was told that they don't have any Y chromosomes to work with in her sample, and they advised her to go ask her Dad about heritable risks from that side of the family. (She's back at college so we're doing this via e-mail.) ....
They understand that there are things about yourself which you might not care to know, and they leave that choice in your hands. When you view your results page on 23andMe, it's just a summary. They tell you that they have your genetic info on Alzheimer's, Parkinson's, breast cancer, and a few other issues. You have to dig to get it. You have to start clicking on "unlock" & "acknowledge" buttons for several layers before you get to the bad news.

I am totally aware that on ancestral issues because I'm not a guy there is a lot of paternal stuff I won't know about. Unless it shows up in my genes I won't know about it...even if it might show up in my father's genes.

The issue with the potential bad news stuff is that while I might have to dig to get to the Alzheimer's information I know that the fact that it is actually right there would nag at me and I would look at it. The fact that my birthmother is in her 80s with no sign of any cognitive impairment may make it a bit more likely that I won't get bad news. And, I know that even if got negative ApoE4 results (which appear to be about a 20% chance) that is only something that equates to more risk and isn't dispositive at all. I guess what I really wish you could do is have those results simply not be available to you at all. I don't mind them testing for it but just wish there was a way to tell them not to make the information available at all on the site....

- - If I found a high probability of a genetic issue, I could worry about it and it might never happen. At any rate, I do not see what I really could do about it.

I think this depends. As I've indicated I'm reluctant to know about the ApoE4 and increased Alzheimer's risk as that is something that I don't think I could do much about.

That said - there are situations where what you learn could be helpful. It could alert you to a problem or potential problem that you didn't know about (in my case I'm adopted so that is a real possibility). And it could be motivating for some people.

 

[obgyn65]

Please keep us informed, Nords. I would be interested in hearing about more details (e.g. about the actual process, not your actual results), as this may be something I could advise some patients who cannot afford more expensive options. Thanks.

I'm going to blog about the process, and I have some decisions to make on how much of the results I care to share. 23andMe has confirmed that all three of us are going to die someday, but now we can worry about it more constructively. Or not. Let's just say that I'm past "fear/anger/denial" and deeply into "bargaining". I'll probably never achieve "acceptance".

 

[timeasterday]

After you sent back the test kit, how long did it take to get the results?

 

[Bestwifeever]

DD and her DH had prenatal genetic teating done when a fertility issue was linked with cystic fibrosis and that partner was shown to be a carrier. It was very stressful but purposeful for them.

For me, I can't think of how I might live my life any differently. It would probably be a case of "wish I didn't know now what I didn't know then."

 

[donheff]

I am somewhat interested. I'm not afraid of knowing but am a bit skeptical of how useful the information is at this point. I have read that for most people the info won't really tell you anything. Nords - I suspect you have read everything about this and can enlighten us about the general state of the art. I would also like to know (without the need for sensitive details) about whether the results show interesting things you were not even expecting to learn. I.e., any pleasant surprises along the lines of, "I didn't know they could tell you about that?"

 

[REWahoo]

DD and her DH had prenatal genetic teating done ...

I did a bunch of that as a very small baby, but it was all postnatal.

 

[Bestwifeever]

I did a bunch of that as a very small baby, but it was all postnatal.

Well, I admit it was superhard on us moms, getting those SAT and ACT testing forms to them.

Oh you mean the teating part. You should see what I almost posted about my flu sh*t....

 

[Lazarus]

What does the test show about ethnic background. I am interested since I work on my Genealogy. Don't need to know yours just what kind of info the test can show.

 

[Tigger]

Basically I am not sure that I want to know about ApoE4. I know I could get the results and just not look at that one. But, I also know me. If the test is run and the results are there I think I would likely look at them.
I really want the other results....just not that one. I would be interested in doing the testing if I could have all the other testing run but not that test.

- - If I found a high probability of a genetic issue, I could worry about it and it might never happen. At any rate, I do not see what I really could do about it.

Having an increased risk of Alzheimer's doesn't mean that you're actually going to develop it. I have twice the normal risk and I almost never think about it.

I now just pay a little more attention when I read about prevention and therapies, which is probably a good thing as prevention and early detection can mean much better outcomes, with many health conditions.
I'm not skipping screening for other diseases, as genetics is but one part of the puzzle, in most cases it gives you an increase or a decrease in risk, but that doesn't mean that you'll be hit or spared.

Good luck, whatever you decide. I'm in my fourties, which probably also makes it easier not be too concerned. On the other hand, I've always been something of a hypochondriac, or at least my keen interest in what could go wrong and how I can anticipate looks like that in the eyes of friends and family.

For $99 I'm interested, but when new DNA links are found will I need to be retested? A full map that I could reference when new links are found would be cool.

As new information becomes available, it's added to your profile on 23andme.com.
But somehow I expect that this won't be my last DNA test.

 

[Nords]

I guess what I really wish you could do is have those results simply not be available to you at all. I don't mind them testing for it but just wish there was a way to tell them not to make the information available at all on the site....
I think this depends. As I've indicated I'm reluctant to know about the ApoE4 and increased Alzheimer's risk as that is something that I don't think I could do much about.

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."

After you sent back the test kit, how long did it take to get the results?

We all sent our kits back on Monday 17 Dec (pre-paid USPS). I forget where the shipping address was but the week before Christmas in Hawaii is one of the worst times of the year to send mail. My sample arrived at the lab on 26 Dec, so that's about right for this time of year. My results were "ready" on 7 Jan but my spouse and our daughter had theirs a day or two earlier. I say "ready" because not all the info was posted on the website until 8 Jan.

So... shipping plus a couple weeks, just as advertised. Of course the price drop might generate a lot of new customers and cause a backlog.

I am somewhat interested. I'm not afraid of knowing but am a bit skeptical of how useful the information is at this point. I have read that for most people the info won't really tell you anything. Nords - I suspect you have read everything about this and can enlighten us about the general state of the art. I would also like to know (without the need for sensitive details) about whether the results show interesting things you were not even expecting to learn. I.e., any pleasant surprises along the lines of, "I didn't know they could tell you about that?"

The results are extremely detailed (the "summary" is over 30 pages of printout) and quite enlightening. I got a significant-life-moment eyeful of unpleasant and unexpected surprises. It's not as bad as playing Russian Roulette with a semi-automatic pistol, but there's more than one round chambered in my genetic revolver. I have a lot of research and reading to do and more lifestyle changes to consider. It turns out that I'm a carrier, too, so my whole "blogger groupie" research is probably not going to work out either...

My spouse confirmed her heritage and eased her suspicions about a couple questions. She's already writing her winner's acceptance speech for our alma mater's "Ten Oldest Alumni" competition.

Our daughter is going to want to do genetic testing with whomever she decides to procreate. So I'm especially glad that we (particularly me) did this testing for her benefit.

There are pleasant surprises too. For example my spouse's results came in first, and we learned that her genotype is 2.7% Neanderthal (out of a possible 4%) with a worldwide average of 2.5%. I had a lot of fun with spouse-related Neanderthal humor for the 24 hours before my results came in... at 2.9%. Our daughter came in at 2.4%, so I guess evolution is occurring.

23andMe makes research-based predictions on your ability to metabolize alcohol, whether you'll have adverse reactions or sensitivities to certain drugs, and whether you're likely to be addicted to heroin or to overeat. To their credit, they just point out that you have genes which have been implicated by research, and they supply you with the citations so that you can make your own assessment.

What does the test show about ethnic background. I am interested since I work on my Genealogy. Don't need to know yours just what kind of info the test can show.

The company knows about the Seven Daughters of Eve (mitochondrial analysis) and has a huge genealogy database. They also let people with 23andMe accounts sign up to share ancestry data. I'm sure they're discussing business options with websites like Ancestry.com and organizations like the LDS.

My spouse has done a few years of genealogy and has already pinpointed the birthplace of her great-grandparents. 23andMe said "Yeah, you're pretty close, but it's across the street and down four doors." They nailed it for me, too, although admittedly my name is pretty common in that corner of the world.

Our daughter is just thrilled to confirm her heritage, especially in Hawaii where it's very much a topic of discussion. I'm considering buying her a Viking helmet for her commissioning ceremony.

Please keep us informed, Nords. I would be interested in hearing about more details (e.g. about the actual process, not your actual results), as this may be something I could advise some patients who cannot afford more expensive options. Thanks.

I'm going to eventually stop commenting on this thread and move the discussion over to a blog post.

 

[Sue]

Nords, do you have any financial interests or ties to the company 23andMe?

 

[Tigger]

I'm going to eventually stop commenting on this thread and move the discussion over to a blog post.

I'm interested. Where is this blog?

 

[haha]

I did a bunch of that as a very small baby, but it was all postnatal.

That is something i have continued well into middle age. Never know when I might find something new.

Ha