I didn't know it was DNA Day; I didn't know there WAS a DNA Day! Oddly enough though, I was planning on posting about just that thing: DNA. Last February I was perusing my Twitter feed and I came along a tweet that really caught my eye. Three words jumped off the screen at me: Free. DNA. Test. Ooh! So I clicked through to a blog post by openSNP, a website run by some really nice people hoping to make DNA data open (hence the name). They're sort of the FamilySearch.org of DNA data. Anyway, you can see their original post here.
I filled out the application right away and sent it in. Imagine my surprise when I got an email from Bastian saying that my application had been one of the 460 they received that had been accepted! SQUEEE! I just received confirmation from 23andme today that my kit is on its way and I should have it before I leave for NGS.
Why would I want to take a DNA test and allow that information to, for all intents and purposes, be made public? Well, primarily because I am the last leaf on this branch. Except that I have a congenital blood clotting disorder: a Protein-S deficiency. It is a life threatening disorder; I had a pulmonary embolism and to say that I am lucky to be alive is a gross understatement. My concern is that there are collateral branches on my family tree that could also suffer from this most silent of disorders; that it could literally kill someone if they don't know. Generally I'm not an alarmist, but if someone had come to me, prior to my medical event, and said, 'Hey, with a quick blood test you could know whether or not you have a blood disorder that might kill you.' I would've been at the doctor's office in a heartbeat.
What's even more frustrating for me is that, in the 20 years that I've known about my disorder very little research has been done. What has been done proved that there were some decisions I made, based on the information that I had at the time, that I'm now finding out may have been wrong. The most critical one: the first thing my doctor told me was that I would not be able to have children, because the medicine I'm required to take passes the placenta. As it turns out, not only could I have taken injectable drugs that don't pass the placenta, but there's now some research indicating that the type of Protein-S deficiency that I have may not even require me to TAKE medication in the first place. What a terrible thing to know, now that I am too old to start a family (and yes, I'm aware there are women who've had children in there 50s and 60s; I'm not going to be one of them.)
If by making my results available something good can come from it, then I'm all for it. Am I concerned that someone from an insurance company is going to use this information against me? No. Am I concerned a potential employer or client is going to get this information and not hire me because of it? No. Am I naive? Um, well, sometimes, yes. But I truly believe the upside potential of knowing and sharing my DNA results far exceeds any potential negatives. I'm going to be able to find out where I came from; where my roots truly lie. I'll take the results, analyze their impact on the genealogical research I do, and go forward.
Many thanks to openSNP for giving me the opportunity to share my story.
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