So I got this tidy little green box in the mail back in December, all cleverly packaged with a tube of...um, I’m not sure, but it was waiting for my spit, and some directions, and a hole to stick the tube in while I was spitting. Don’t worry, it wasn’t some crazy internet stalker thing (he prefers used Kleenex in sealed Ziplocs); it was a genetic testing kit from 23andMe. Yes, internets, I am offering up my genome for your amusement. Pictures of my kids and stretch marks just weren’t personal enough, so I’m contributing some DNA to science. For you, internets. All for you.
I was prepared to spend at least ten minutes milking my salivary glands for spit. The directions in the cute little green box said that as long as I had finished spitting within fifteen minutes, things would be kosher, and while it felt strange to be disobeying my own direct orders as a mom (“Would you for the love of God STOP SPITTING PLEASE! AND GET YOUR FINGER OUT OF YOUR NOSE!”) it was also strangely satisfying to drool into a funnel. After all, it’s something I apparently do for free all day long, and frankly it was the least humiliating and/or messy medical test to which I have been subjected in a long time. I didn’t have to take my pants off (okay, so maybe I did take them off, but only because they were so very uncomfortable. Nobody MADE me.), no lube or wand-like devices were inserted into any orifices, and best of all, the only strangers involved were thousands of miles away. So I guess I really didn’t need to say anything about the pants. Hi, lab techs! Ha ha ha! Eh heh. Whoo.
The hardest part of the whole spit kit experience was finding – nay, forcing – a thirty-minute window of not eating, drinking, smoking, or chewing anything. Hey, look here, pal: try being 39 weeks pregnant and not eating anything because you can’t fit more than a single piece of peanut butter fudge – no, um, I mean, a flaxseed and kale biscuit -- into your stomach at one time, or drinking anything because you are SO THIRSTY OH MY GOD, or chewing a Tums or maybe a nice plug of chaw!
Oh dear, I’ve said too much.
So I sacrificed a half-hour of perfectly good Hanukkah cookie eating time, and yet was sufficiently hydrated to fill up a tube with spit. If that doesn’t impress you, I don’t know what will.
And then? I waited. After all, I’m no stranger to waiting on the results of genetic tests; I’ve waited on the most awesome kind for, oh, about 42 weeks. Was it worth the wait? Oh, my, yes. I’ll keep you posted.
I can't articulate it very well (still), but I find it so strange that you and others of my favorite bloggers are advertising for this company. I get the intrigue with knowing something about your genes, but it also seems so iffy and potentially Brave New World and like something you might in other circumstances be really critical of. Can you write about why you're ok with working for them, or whether you have any qualms?
Posted by: caro | 04/22/2009 at 05:13 PM
I'm very against this whole thing -- it's soooo not ready for prime time. You're super smart, Jo (and you too, Cecily), and very able to understand some of these risk estimates (which, actually, some very smart people can't), but genetic testing for most illnesses is still in its infancy/ experimental phase. The potential for harm seems quite large -- people altering their behavior on what very well could be completely erroneous information. Eating fewer carbs isn't going to hurt anyone, but, say, continuing to smoke because your reading says you're unlikely to get heart disease or cancer would be.
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Information is power, but misinformation is danger, and right now at least some of these interpretations are definitely misinformation.
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As soon as personal genome analysis hit the market, I was fascinated -- I remember reading about it years ago, and thinking how cool it would be to get a gander at my mitochondrial DNA. That was my main reason for signing up as quickly and as enthusiastically as I did for the 23andMe service: the possibility of a look deep into the past, to the best of our ability to interpret the data. The other stuff, well, that came later.
A child of friends was in the hospital recently. His father, a scientist, marveled at the state of treatment at the most respected children's hospital in the country: "There's just so much we don't know." That's a phrase I hear again and again, with respect to the origins of PCOS, the development of Alzheimer's, so many different conditions about which we know a lot more than we did ten years ago but whose geneses remain largely in the dark. There's just so much we don't know.
For me, that's been the appropriate way to approach the question of personal genome analysis. It's a practice still in its infancy, as DoctorMama rightly points out. And in a world where the majority of people don't know how to interpret weather probabilities, the little nibble of information you get about, say, your chances of developing Type II diabetes can be baffling. 23andMe has made geneticists available for us to talk to about these things, which I think would be an absolute necessity for anybody who hasn't had a few statistics classes, but I also think this is the kind of information people need to take to their physicians. Having a slightly lower risk of developing diabetes doesn't mean you won't ever get it -- and having an increased risk doesn't mean that you will. And absolutely no gene will protect you fully from the effects dangerous things like smoking. Or, you know, inhaling asbestos or driving 110 mph without a seatbelt. Just because I'm resistant to norovirus doesn't mean I eat my cereal out of a preschool toilet.
Here's another example. My genes say that I carry a decreased risk of developing OCD -- but I did exactly that after Sophia was born. One genetic marker suggests a decreased risk for asthma, and another suggests an increased risk. Does that mean I break even and have an average risk? Does it even matter? Either way, I have asthma. I carry two markers that suggest I will have babies of typical birth weight (neither lighter nor heavier than average), and I had one 8 pound 3 ounce baby, and one 9 pound 10 ounce baby. Did I have gestational diabetes the second time? I do carry a marker for increased chances of developing GD. But I didn't get tested, so we'll never know.
Clearly, genes are not our destiny entire. We are complex beings composed of an interaction between our genome and our environment, with a little mystery thrown in if you like that sort of thing. Does this mean genetic analysis is useless? Of course not. It means it's a tiny little piece of the picture, a piece that will be more and more useful as we (general we) gather more and more evidence. I want to participate in the research because I think it's useful, I trust my own ability to interpret the evidence (with expert help as needed), and I find it fascinating as heck.
But that's just me.