DNA sample is getting FedExed tomorrow

[flexagon]

Spit. Spitspitspit. That's me spitting a two-milliliter DNA sample for 23andMe.com to analyze in gruesome detail. Here it is, mixed with DNA stabilizer of some sort.



The 23andMe.com folks say they need saliva instead of a cheek swab because they need a lot of cells, by the way, which is a bit weird since I didn't think saliva necessarily HAD cells in it. The Wikipedia page on saliva says that indeed, it's mostly water, electrolytes, mucus and enzymes, but there also may be "possibly as much [sic] as 8 million human cells per mL", so I am shipping away possibly as many (ahem) as 16 million of my cells. I'm still wondering WHAT cells; maybe some immune-system cells?

I forgot to mention another good reason I have for getting analyzed, and that's Birdie, my biological child. Any genetic condition I have, I could have passed on to her; and so I feel obligated to tell her parents anything of particular note that I find out. We certainly were thinking about genetic quality at the time of deciding to do the egg donation (and decided not worry too much about my father's probable cancer-genes, btw, because V doesn't have much cancer in his family) but this level of knowledge just wasn't available in 2000. Mind you, I'm not saying this good reason has anything to do with my actual decision, merely that it is a good reason that happens to agree with my unreasonably strong need to know.

Had a brief talk about this with some people over the weekend (one a doctor, one currently in med school); the one who was a doctor says that the specific cancers that wiped out my grandparents (colon and esophagus) are theoretically not hereditary. It's amazing how much I don't care about that little tidbit of information, at this point. I'm going to be finding out my REAL probabilities soon.



One more thing -- humor me. When I first posted about 23andMe.com, I really thought everyone and their dog would have something to say about it. If you didn't comment and/or don't think this is interesting, why not!? I'm really missing something here. I understand people are thinking deep thoughts about the right not to know their genetic information, but you can't un-know the fact that you COULD now know it. Either you don't have $1009, or you're now choosing not to learn things about yourself, and I'm probably the one who put you in that position (yeah, it was a top news item at Wired for a couple of days, but that was after my post). I think even that much is fascinating.

Comments

[nevers.livejournal.com]

i didn't comment but i would love to get the info but no way for that kind of money. also i submitted my DNA to science over the summer and it doesn't seem fair that other people are already getting this info from me and i don't get to know it too.

[flexagon]

you've got a wee bit of stuff going on in your own life, too. :)

it's actually not very likely that the stuff you donated would be analyzed at the ~600,000 sites that 23andme.com will do, for the record. it is too bad that you don't get to learn the same info the researchers are learning, though, whatever that is.

I do hope the price drops over time. early adopters like me can only be helping with that...

[taegubcrusade.livejournal.com]

We already talked about this IRL, but here's my comment: "Sounds cool."

Seriously, I think this is interesting, and all the ethical quandaries I worry about have nothing to do with me knowing this stuff. I just don't feel the need to be an early adopter. I'll keep working on the things I know are problems (e.g., weight, triglycerides), and in a few years when the cost comes down (and maybe the quantity of knowledge goes up), I'll do it.

I think this would be cool for my kids, too. S may have inherited Factor V Leiden from her birthmom, and we've got pretty much nothing on H's family history. So I see this as a real boon for them, though maybe we'll wait until they're old enough to weigh in on the issue.

Anyway, I just didn't comment because I sort-of agreed with you, just not so...uh...agressively.

[a-kosmos.livejournal.com]

I didn't comment about your original post, but I did think about what you had to say. While I could pull together the dough for the test (tuition has been a bit of a drain on my bank account), I have to say that I'd be more likely to spend the money on something else more frivolous and less introspective. I wonder what that says about me??

I always felt sort of alien from the people I'm related to.... something that is not helped by not having a relationship with my father or his family. The other (kind of contradictory) part is that the women on my mother's side of the family are pretty healthy and tend to have reasonably long lives.

At the same time, I'm really curious to hear what you find out!!

[flexagon]

Interesting, I would think that not having a relationship with half your genetic tree would make the idea a lot more appealing. (I'm assuming that having no relationship means you don't have their medical histories.)

I'll be posting more when I get results, don't worry. :)

[a-kosmos.livejournal.com]

Actually I have a reasonable amount of their medical histories. My father had a sister who died as a small child of cancer; grandfather died in 1993 of heart stuff; grandmother has neuropathy (although I don't know why but I'm assuming she's in her 80s). I don't know much about my father's health stuff. He's not dead and hasn't asked for a kidney.

This is the time of year when I do sort of think about calling paternal grandmother, though. We'd been in occasional contact until about 3 years ago.

[miyyu.livejournal.com]

I think this is fascinating that you're doing this. I'm dying to hear what happens and how you end up feeling about it, because frankly it will influence my own decision as to whether or not it's worth it.

What I wonder about is how, if at all, the knowledge this provides would influence me, or anyone. I know people who if they were told had a gene for a type of cancer would act as if they were instantly dying and give up on their lives, even if it just meant they had a predisposition to the disease. Intellectually, I know of my own mortality, and in a sense, that wouldn't/shouldn't change anything. I ought to be living, as my favorite pyschology professor once told me, with "death as my advisor," i.e. living each day with as few regrets as possible and as much meaning as I can eke out. I don't manage that as much as I think about it, and I wonder if any concrete knowledge of potential mortalities would do more harm to me mentally than good.

How much information will this give you?

[flexagon]

I do think the knowledge could affect different people different ways. Heck, some people think the FDA won't trust us with access to it for long (hoping they're dead wrong, of course). I can't really imagine not wanting to know all that I can know. It's all probabilities, and lifestyle is as important as genetics for a lot of conditions, so knowing gives a person a chance to act differently accordingly. I mean, if I find my genes predispose me a lot toward cancer I'll definitely do more research on diets, supplements etc that skew the odds back toward normal.

As for how much information, I'll tell you for sure in a few weeks. :)

This guy makes me feel a little less crazy: OMG how could I not do this? Thank you, Joe Duck, that's my point exactly.

http://joeduck.com/2007/11/18/23andme-and-me/

[apfelsingail.livejournal.com]

I think it's pretty cool; I just can't afford the money. It will be interesting to see how the report looks.

[perfectbound.livejournal.com]

yeah - interesting, but so much money. also the health problems in my family tend to have to do with non-hereditary things like diet and smoking.

[hiddenbear.livejournal.com]

I'd put my money point at about $250. Considering I could probably do it with pre-tax money from my flexible spending acct. , I guess that means as much as $400 would be ok.

Anything more than that and there are things in the present that I would much rather buy and enjoy.

I'm not much afraid of death. I am afraid of prolonged sickness. So it would be nice to know if that is what is in store for me, so that I could take up some nice extremely-dangerous hobbies like BASE jumping or something.

[flexagon]

Damn, you made me lose a bet with myself. I figured the only people who'd complain about $1K are the ones who haven't bought a house or condo yet. :)

[bluechromis.livejournal.com]

I agree with HB again about my general price point. A grand is way more than I'd wanna blow on this, and the privacy concerns definitely tip it over.

Anyway, what I really wanted to say was did you know 23andme was founded by the wife of your dear CEO?

[flexagon]

Sergey's one of the founders, not the CEO, but yeah... I ran across that tidbit. :)

[silver-spork.livejournal.com]

I worked in the general area of DNA sequencing and SNP (single nucleotide polymorphism) detection during graduate school (1998-2003) and there is still so much that we just don't know about specific causalities beyond some SNP locations for Alzheimer's and for BRCA1/BRCA2, two areas that do point to a bleak prognosis for breast cancer patients.

Although they will be scanning ~600k areas of your DNA, I find it hard to believe that their final analysis will yield much in the way of concrete evidence. I'm not sure if $1000 is a fair price for generalizations. Then of course, there are the privacy issues.

I did a little poking around and found this:

"We may use Genetic and Phenotypic Information to conduct 23andMe-authorized scientific research and development. Any Phenotypic Information you provide is done on a voluntary basis. We may provide third party organizations access to this information for scientific research, but without your name or any other Account Information."

Without reading the full privacy disclosure (I haven't done that), this statement is extremely worrisome. It sounds as though they will attempt to protect your phenotypic information through making your disclosure voluntary, but that your genetic information will be available to 23andMe and third parties.

As we do get better at predicting genetic factors for everything from cancer to poor eyesight, our genetic information will become more and more valuable and the use of this information will have more and more serious ethical considerations. The Senate is trying to pass non-discrimination laws covering genetic information (GINA Act of 2007), so far without success.

Sorry to be Capt. Bringdown, but that's how I see it.

[flexagon]

It's pretty fascinating how we can look at the same facts and get an entirely different picture. I'm happy to have someone weighing in who worked in the field, though, so thanks for the thoughtful comment. I'll give details later on how much I find out -- based on articles I've read by people who have had the analysis done, I think I, personally, will be happy with having spent $1000. Generalizations are a lot better than the nothing I have now. :)

there is still so much that we just don't know

We may use Genetic and Phenotypic Information to conduct 23andMe-authorized scientific research and development... worrisome...

I find these two sentiments together pretty worrisome... they set up a pretty self-perpetuating situation, no? If people are worried about being part of studies, they won't happen and the body of knowledge won't grow. That doesn't sound like a dynamic I want to be part of. Without rereading the privacy statement, I do think I remember that all sharing is opt-in, but I just find that exciting, a chance to be part of the growth of this branch of science. (I don't have to give them any phenotypic information, and I might not; and if indeed the genetic stuff will be shared but anonymously, that's fine). SOME people have to feel the way I do, or the studies can't happen.

It's funny, I've often joked that I was born without the privacy gene, but with people giving me serious talks about how genes are not destiny, it doesn't sound as funny tonight. It's true, though, that if there was a privacy-sensitivity gene, I wouldn't have it. I wonder sometimes if it has to do with being somewhere on the geek/Asperger's/autism spectrum. I read somewhere that a few other "big concepts" like patriotism tend to leave Aspies cold...

As we do get better at predicting genetic factors for everything from cancer to poor eyesight, our genetic information will become more and more valuable

Right, which is why it's so cool that my genome will stay online so that new research can be evaluated as it happens to apply to me. I know about GINA, and find it encouraging that legislation related to this stuff is already in the Senate; it takes time to get the right laws through, and I'm not even familiar enough with GINA to be sure it's the version of the concept I'd be most in favor of, but clearly the lawmakers are working on something about genetic non-descrimination. We don't seem to be heading in the direction of Gattaca just yet.

Sorry this is so long; I couldn't sleep and finally decided to give up on trying for a while.

[silver-spork.livejournal.com]

Thanks for your comment. I have no problem with donating material for specific research. Many people allow their tumors to be used for genotype/phenotype information, and lots of Alzheimer's/Parkinsons/ALS patients donate their bodies to science for that specific research. I realize that 23andMe may speed research in other areas, but that will depend how much they will charge for access. Very few academic labs can afford a $10k/yr license (ballpark for this type of access in 2003).

My problem is the wholesale collection and storage of DNA and genomic information without a clear picture of how this information will be used (and profited from) and without any idea how this type of information could be abused in the future. Gattaca is still a fable, but discrimination is not.

[birdofparadox.livejournal.com]

I think it's incredibly cool, but I'm more likely to spend the $1000 on something like tattoos or yoga workshops than anything else. Matthew and I aren't having kids for sure, and my health is complex enough that knowing anything else that might be wrong would only send me into more speculation.

[niralth.livejournal.com]

Meh. I really don't care about that info that I'm choosing not to learn. And I don't mean that I kinda care and I kinda don't. I really really don't care.

Even if I found out that I'm at elevated risk for developing such and such disease, that wouldn't change anything about how I live my life. I already eat right, exercise daily, get regular medical examinations, etc etc. There are a lot of things I can do with that $1000 that's way more worthwhile to me. I think I might do it if it cost $20 or less, but it's definitely in the range of "novelty item" for me.

[flexagon]

Okay... blinkblink... I'm glad you commented, because you're the first with that perspective. I can't imagine feeling the way you feel, but it's a valuable reminder to me that different people get excited about different things (or not). It's something I intellectually know, but occasionally can't fathom viscerally... stuff like this on the one hand, and things like babies, Radiohead, patriotism, chess and cars on the other. :)

[niralth.livejournal.com]

Yeah, it's really true, and easy to forget. I've spent thousands and thousands of dollars on going to live concerts, sometimes flying to other cities to do so, which is probably equally baffling to you.

I'm totally with you on patriotism, chess, and cars though. :)

[flexagon]

Haha. Yep, traveling to go to concerts is a great example. Not that I avoid them -- I'll go if something's in town and convenient, or heisenbug really wants to go -- but I guess I only like them a little bit.

I look forward to reading your next writeup of a festival, though, I usually learn something. :)