My biggest concern when I sent off that little vial of spit to the 23andMe lab didn't have much to do with what I might learn about myself. Most of the big genetic bugaboos -- Parkinson's, diabetes of both flavors, breast cancer -- will have already made their familial presence known. Since I have a pretty good idea of what exactly is wrong with every single person in my extended family, and it ain't just diabetes, I didn't figure any nasty surprises awaited me in the results of the genetic analysis.
No, I was worried about privacy.
That may come as a shock to any of you familiar with the Grand Central Station of Oversharing that is my blog, but I wanted to know who was going to have access to this information. In-house scientists? Telemarketers? Insurance companies? Ex-boyfriends with boundary issues? How would 23andMe use my genetics for research without spilling the beans?
As it turns out, when genetic information (and phenotypic information that I submit in surveys) is used for research, it's divorced from my identity, so that's no problem. And the contracted lab doing the analysis doesn't have my identifying information, just a barcode (that 23andMe can associate with my identity, but layers of privacy blah blah blah so I don't worry about it). Okay then. So no fears of, say, being denied insurance coverage because of my genes -- which is the possible bad outcome everybody seems to bring up when genetic analysis hits the news. (Although, hello? Socialized medicine will nullify at least that concern. I'll just sit here holding my breath, mmkay?)
Anyway, my insurance company already thinks I'm diabetic. Fill one little insulin-sensitizing prescription regularly for five years, and the ideas they get! There's nothing I can say to them that will stop their Giant Pamphlet-Barfing Machine from sending me cheery red-and-white brochures depicting smiling elderly people enjoying a brisk walk.
Which leaves the power of disclosure pretty much in my hands. And you can see what direction that's taken. Does that trouble me? Well, no; although in my case it hasn't been a difficult decision. I'm extremely fortunate that genetically, anyway, there's not too much terribly wrong with me, and I'm not exactly taking a big risk sharing my slightly increased risk of developing Type II diabetes. You know, since you kind of already knew that, with the PCOS and all. There's not too much at stake for me. But what if I did have something uglier lurking in the A's and G's and T's and C's?
This is me we're talking about, so I'd probably blare it far and wide. A habit of broadcasting events that are not ordinarly considered community happenings -- say, childbirth -- has left me with as much modesty as a woman with a baby hanging halfway out her hoo-ha, or alternately a very drunk college student. (The two have more in common than you'd think: there is a lot of yelling, it's hard to walk, both will later be referred to as "the totally most meaningful thing of like my entire life".) I don't mind anyone knowing what there is to know about my genes. And honestly, I don't understand why it should be such a huge problem -- after all, your genome is one of the few things you're really not responsible for! If your eyes are blue, you're lactose intolerant, you're prone to psoriasis, hey! It's really not your fault! The great thing about genes is that they aren't moral failings!
Except...well, except that the above is a luxuriously post-eugenics viewpoint, no? But I refuse to lend the slightest bit of credence to any system of thought that dictates otherwise, so I'll stand by my statement: genes aren't moral failings. The fun and the mystery of the genome is as close as this ex-Presbyterian wants to get to predestination. If personal genome testing ever hits the mainstream, becoming something as common as a cholesterol check, I hope it nudges our culture into accepting that blame for one's personal, genetically driven health misfortune has no place in medicine.