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decoding destiny
knowing does not change what is
by michael d. driscoll
6.12.09
tech


When I announced to my friends and family I was starting my genetic journey to decode my DNA the best response I got was, “That’s amazing…for you…and all…that…wow” followed by “...but I don’t think I’d want to know mine. TMI TMI!”

By that time I had the advantage of working through the quandaries of the opportunity, as one should, with the final result summed up in these words: knowing does not change what is.

Whatever my parents, grandparents, great-grandparents and so on up the tree unleashed upon me genetically is a part of who I am. And over time it was the unknown that bothered me more than what lie ahead.

181,440,000 Seconds Later
This journey started on May 14, 2003 in the 10th row of Carroll Hall at the University of North Carolina-Chapel Hill listening to the co-discoverer of the double helix tell his tale. James Watson’s mind-blowing account of using x-rays to discover the structure of DNA planted a seed that would take years to grow.

Jump forward to November 2007 when WIRED published Thomas Goetz’s article “23andMe Will Decode Your DNA for $1,000. Welcome to the Age of Genomics” and thus the first sprout from the seed Dr. Watson had planted in 2003 was sprung. Unfortunately, in 2007 I didn’t have a thousand bucks to fund my curiosity so I waited. And watered the sprout. And waited. And waited some more. Then, in September 2008 23andMe reduced its cost to $399 and that dormant seedling had found the sunlight it needed. Two months later I had the sample package.

Curiosity Funded
I chose 23andMe because I knew the most about them at the time. They partner with Ancestry.com where I trace my family; at the time I had not done my research on other “retail genomics” companies such as Navigenics and deCODE, and well, Time magazine named 23andMe as the “Invention of the Year” which didn’t hurt either. I hope anyone reading this will find the right service for them. I went for cost and the shiny package, which for me is very scientific.

testing kit

It’s still surreal to know commercial DNA-testing is available. I used to believe I needed a life-threatening illness with genetic implications to get a test, but no, you just need a debit or credit card and an address to get the testing kit. Easy breezy.

Like some sort of DNA groupie I took pictures of the kit when it arrived. I opened it like a new product video, like the ones you might see on Engadget, and read everything they sent. The kit comes with your name on it, a claim code and a URL to register your kit. I may have howled like a mad scientist when entering my claim code, but fortunately you’re not going to hold that against me...for long.

Please Review the Information Below Carefully
OK, now it’s getting real. Enclosed in the package is a one-sheet containing the contents of the shipment, how to collect the spit sample (oh yes) and what to expect next. They dropped the price hundreds of dollars so I’ll forgive them for the money they saved on the copier paper with the toner smudges at the top. This didn’t inspire confidence, but the fact my name was on it made up for it.

Hello, consent form-sticker-thingy. By removing the sticker and providing a saliva sample I agreed to the 23andMe consent form and legal arrangements upon registering the sample online. So this is the precipice. There’s no turning back after a $399 investment. It’s time to spit and reveal my genetic destiny.



With the sample packaged and ready to ship I remembered what Mr. Goetz wrote years ago: “...we will face the burden of whether we want to know in the first place. We’ll learn what might be best for us in life and then have to reckon with the risks and perhaps the guilt of not acting on that knowledge.”

With knowing comes choices.

Next month I’ll reveal some of the findings, my reaction to the decoding of my DNA and what I’ve changed, or not, as a result.

--
Want more? Check out MichaelDriscoll.com for other ideas on culture, the economy and social media.


ABOUT MICHAEL D. DRISCOLL

Curious about everything, Michael plans to do it all. A ruffian by day and a lover by night he's managed to go where no one else has gone. His slight forgetfulness means he is curious about everything and plans to do it all. A ruffian by day and a lover by night he's managed...

more about michael d. driscoll




COMMENTS

robert melos
6.12.09 @ 8:31p

Thank the Gods it was a saliva test. My main question is, what does one do with this information once one has it?

tracey kelley
6.13.09 @ 2:00p

This is SO COOL!

However, you realize the government will now modify your DNA and create a new alien race grown in hives somewhere in the Soronan desert.

But, still, COOL!

When I did public policy research for the Univ. of Mich, our adolescent component included gathering saliva in test tubes. I have seen more bad spit from other people than I ever care to see again.

alex b
6.14.09 @ 3:34p

WOW. I can't wait for your next piece.

sandra thompson
6.14.09 @ 5:31p

I can't imagine not wanting to know. I reckon curiosity killed the cat but not me!!! I sent my spit off to the National Geographic Genographic Project a couple of years ago and found out that my ancestors left Africa and got as far as Finnland. I know they got as far as Denmark, Scotland and England. but the genetic markers only got us as far as Finnland. Just backtracking my maiden name (Thorpe) tells me that at least one male ancestor left Denmark with Canute a thousand years ago and just stayed. Half the people in County Kent are named Thorpe. I'm sure I have genetic defects of a medical nature but most of them have shown up by now.


lucy lediaev
6.15.09 @ 6:11p

Because of my job, I read a lot of news about genome research. One of the concerns about these commercial DNA decoding companies is that the information could easily be captured by insurance companies, employers, and others who could use it to discriminate against those who have identifiable markers for specific diseases and genetic mutations. Among scientists and physicians, there is still a lot of discussion about the usefulness (and potential harmfulness) of these tests when available to the general public. One of the other concerns is the impact of certain information on lay people without a physician, genetic counselor, or other trained professional to help interpret the impact of certain conditions.

lucy lediaev
6.17.09 @ 4:25p

In response to many issues surrounding genetic testing, the US Center for Disease Control has issued guidlines for testing. Anyone considering the testing might be interested in this article, which is an overview of the guidelines:

Genome Web Daily News

[edited]

dirk cotton
6.17.09 @ 5:31p

In college, I helped a friend overhaul the engine in his Chevelle SS 396. When we pulled the cylinder heads, I noticed burned carbon gunk all over the piston heads. Should we clean that off? No, I was told, it wouldn't improve engine performance noticeably and pieces of the gunk might get trapped and score the cylinder walls. One of my friends nodded and said, "My engine runs great. I NEVER want to see what the insides look like." That's how I feel about my body. Unless something needs fixing, I don't need the details.

michael driscoll
6.24.09 @ 7:25p

Jeez...I barely know where to begin with the second article. Every month it seems there are new updates to my traits, carrier status and disease risks. Sometimes the data is overwhelming. I am happy to read that I have a typical risk for Tourette's Syndrome, though this fly circling the house is making me feel like I'm swatting air and yelling obscenities for no reason. Oh gosh, I hope there really is a fly in here.



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