The Quantified Self: Exploring your genome with 23andMe

The Quantified Self: Exploring your genome with 23andMe

Summary: Fancy the whole "quantified self" thing? You've got 1.5GB of data in your own DNA that might be worth adding to the quantification mix. I did, and it was totally worth it...

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Woman Spitting
This is a photo from 23andMe's press department showing a lady about to spit into one of their test kits. Just 5ml is all it takes.

The idea of the "quantified self" is getting some interest lately. This is the idea that we can measure our lives using technology that fits into the definition of ubiquitous computing -- simple devices that fit into the background of our lives and deliver value.

But here's a dimension to the quantified self that you perhaps haven't considered -- why not have a look at your own genetic code? You've got about 1.5GB of data in your genome. That's got to be worth a look, right?

Sequencing

23andMe is a service that provides genetic testing. The idea is that you buy a testing kit -- which is a tube that you spit 5ml of saliva into -- send it to them, they run your DNA through a genetic sequencer and then dump a load of stuff in a database for you to look at online.

Anyway, this is what I did when I ponied up the $99 (£60) to get myself quantified, genetically speaking.

This isn't actually "genetic sequencing", what you don't get out of the end of it is a dump of your DNA. (I must admit, when I bought the service I was expecting this, but as we'll see it turned out to deliver value regardless.)

What 23andMe do is look for specific genes the presence of which, or not, gives rise to certain things which they then dump into your personal genetic database.

What's tended to spook people out when I've told them that I've had this done is a fear of being told something that that'd rather not know in terms of their health. If someone said to me that they could guarantee to tell me on which day I would die and of what, I'm not sure I would take the information. I'm not sure many people would, but it's that sort of territory you're in when you look at "quantifying yourself" in this way.

What if I were to find out something I really didn't want to know?

When your data is ready (which takes something like 4-6 weeks), 23andMe will take you very gently through a bunch of questions about whether or not you want to know about scary health problems that you may have.

There's a collection of safe (boring) stuff in your personal genetic database. The tests showed that I am likely to have brown eyes (which I do) and that apparently I can't perceive bitter tastes (but how would I know?!), etc.

Another preconception I had before doing this was that it would be quite sci-fi -- specifically that 23andMe would just present a list of stuff that was definitely one way or definitely the other. Almost like this service could take some of my spittle and draw a detailed picture of me.

In fact it's much more wooly. Genetic testing of this type (not just 23andMe's service) comes up with things like "we're very confident you're x percent more likely to develop abc", "we're not very confident but we think you might have a lower chance of developing xyz than average", etc. It is not black and white.

And so it comes to me that I have a 6.12 times higher than average chance of developing Crohn's disease. Bingo -- I do indeed have Crohn's disease, and moreover the testing has shown a high degree of confidence in that fact.

But, there are six other diseases that I am elevated risk of and that 23andMe is confident in that disk assessment. So the question is, "do I want to know what they are?"

You, dear reader, might as well know that I have an elevated risk of atrial fibrillation, psoriasis, age-related macular degeneration, gallstones, Parkinson's, and ulcerative colitis. (For fans of bowel pathology, that last one is a given seeing as I know that I have Crohn's.)

Screen Shot 2013-06-02 at 22.33.00
Here's a list of the seven things that 23andMe is confident that I'm at elevated risk of. And yes, before you ask, it does feel rather uncomfortable sharing this information in this way. I'm looking at it as an intriguing social experiment...

Sand

The one I want to talk about is age-related macular degeneration (AMD). I have a thing about my eyes -- if I think about losing my sight I get a real kick of anxiety.

For a while several years ago I used to listen at the same time each week to a magazine radio programme for blind and partially sighted people on BBC Radio 4 called "In Touch". It wasn't a programme I sought out -- I had an appointment one evening a week at the same time, used to arrive early, and it used to be on the radio.

For about six months that programme had a few minutes about AMD every week because of a change in the NHS's licensing of a drug to treat "Wet AMD" (I think). And I used to get more and more freaked out about it because it keyed into that preexisting anxiety.

In the intervening years, I've steadfastly tried to believe that this disease didn't exist -- and as a result I was immune to it. Ostrich-like, much?

Where 23andMe has been a benefit with that (admittedly slightly odd) story is now, because someone has told me the fact that I'm 3.3 times more likely to develop it than average I've read up on the symptoms. So if/when I do start to show those symptoms it seems to me that if I can continue to be that rational, that's got to be beneficial to me being able to manage my medical care and keep my sight, or more of my sight? I'll definitely be able to see more compared to burying my head in the sand.

As a geeky engineer I'm quite confident of this approach. It's like a piece of code you see when you're working on something and you think "I'm going to need to go back and fix that". It's a little fault sitting there that I now know is there. I can plan for it.

For me, that's the takeaway of doing this. It's great using something like a Fitbit to work towards your goals of getting more exercise, or eating more healthily, or yadda yadda. However, you'd surely have to be a very special individual who could manage that sort of "quantification of the self" day after day, year after year.

But each of us will at some point have some pretty awful stuff happen to our health, and that's where this sort of quantification of the self can -- I believe -- be a huge benefit. Simply, forewarned is forearmed.

What do you think? Post a comment, or talk to me on Twitter: @mbrit.

Topics: Health, Emerging Tech

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2 comments
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  • Sounds Interesting!

    Thanks for sharing; I just went and checked out their website and a few of the other articles written about them, and I'm definitely going to have a chat with my wife tonight about getting this done.

    I also like the idea the Forbes article pointing out, that getting this doen helps more than just me and mine:

    "23andme talks about the “power of one million people,” meaning, if one million take these tests then the resulting genetic database could lead to big research breakthroughs and these could lead to all sorts of health/performance improvements. This is what 23andme is really selling for $99 bucks a pop—a crowdsourced shot at unraveling a few more DNA mysteries."

    (http://www.forbes.com/sites/stevenkotler/2012/12/13/what-is-23andme-really-selling-the-moral-quandary-at-the-center-of-the-personalized-genomics-revolution/)
    chuckharold
  • 2nd Opinion

    You can also get a “second opinion” (either for free or at nominal cost) by running your 23andMe data through our Promethease program. It's connected to SNPedia, the wiki about DNA variations. (URL: SNPedia.com)
    SNPedia