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The genie is out of the bottle. Personal genomes are not just for Venter and Watson anymore.

Three competing companies, 23andme, Decode, and Navigenics are betting that you want to do a little better than reading your horoscopes and playing with tea leaves. They think that you want to know something about your destiny and take control of your future. And when I look at the 23andme web site, I want it, too. I want it so badly, it makes me drool.


But is it really such an unequivically good thing?

There’s been a long-standing debate between companies and at least some scientists and the genetic counselors about making genetic information more readily available. The counselors argue that people won’t use the information in a wise way. They argue that you’re going to abort your children, divorce your spouse, or do all sorts of horrible things if you get genetic information without the benefit of proper counseling to help you make sense of the information and understand what you’re learning.

On the other side are the people who argue that “information wants to be free.” Why should some people have the option to get their genomes sequenced and not us? Why shouldn’t we know what we’ve inherited and who we’re related to?

Now, you can. At least for awhile. You might not get your whole genome sequenced but at 23andme you can find out why you’ve never really cared for brocolli, why you get gas after eating cheese, and whether or not you should be donating heavily to Alzheimer’s research.

And of course there’s the appeal of finding out if you’re related to Marie Antoinette, Benjamin Franklin, or Jimmy Buffett. Curiosity is a hard thing to control.

Everything looks good in Margaritaville.

Still, if I peer in my crystal ball, some interesting twists that lie ahead.

Fertility and liability
23andme doesn’t claim to give you medical information, but it would be hard to ignore information that’s medically related. For example, you can find out about genes related to female fertility. Imagine that you adopt a child based on what you’ve learned at 23andme, and then you find out that your partner is pregnant. Would that be a problem?

What if you find out that your child is likely to suffer from a genetic disease? What do you do?

Breast cancer and Sue
A woman, let’s call her Sue, worries she might have breast cancer, but Sue is in the U.S. army or she works for an employer who will fire her rather than pay her insurance, or she’s insured by a company who’ll consider hereditary breast cancer a pre-existing condition. So, what does she do? Should she go through her doctor? Sue’s doctor is legally obligated to report everything to her insurance company. If she gets tested by her doctor, her insurance company will know the outcome.

Since Sue is a Web 2.0 kind of girl, she might just go to 23andme. They’ll tell her if her DNA has genetic characteristics related to breast cancer. Sure, Sue will have to figure out what to do with that information, but she will own that information, not her insurance company.

But what will happen next?
Are companies, like Myriad, who make genetic tests for breast cancer going to have issues with the possibility of patent infringement? Are companies who perform medically-regulated genetic tests going to have problems with this scenario?

Databases and temptation
Genentech is one of the companies who’ve invested in in 23andme. Genentech also sells drugs like Herceptin, for breast cancer, that are prescribed based on the results of genetic testing. Isn’t it possible that, as 23andme builds a huge database of subscribers, that Genentech might want access to that information? How long will that information remain secure?

Insurance companies and the lure of knowledge
How long will it be before someone subpoenas 23andme to get information that someone thought was going to be kept private?

It’s great to imagine having access to all of our genetic information, but once we get past the smoke and mirrors, the consequences might not be so uncomplicated and simple as we’d like to believe they seem.

Goodbye Genie, Hello Pandora.

Let the conversations begin.

Comments

  1. #1 s.johnson
    November 20, 2007

    Doesn’t sound any more interesting than having your family history researched by your last name. The only threat, as you correctly pointed out, is from insurance companies misusing the data for extraction of yet more profit.

    What I find more interesting, however, is the advent of personal genome sequencing with portable analyzers:

    http://www.engadget.com/2007/06/13/spartan-dx-personal-dna-tester-goes-for-a-mere-15k/
    http://www.japantoday.com/jp/news/420120

    I’ve seen Genetics kits for kiddies in Discovery stores to extract DNA from plants and do some basic experiments with it. So, it shouldn’t take more than a few years for a personal kits to appear on the market that do all that in the privacy of your own home. Something along the lines of AccuCheck style devices.

  2. #2 OneRandomScientist
    November 26, 2007

    It wouldn’t necessarily require a subpoena for your genetic data to leak out. If credit card companies can have personal data stolen, the same can happen to 23andme. Not to mention phishing scams and the like where people can steal your account information directly from you.

  3. #3 Dave Briggs
    December 6, 2007

    “But is it really such an unequivically good thing?”
    I think you ask a VERY POTENT Question! My answer is yes and no. But someone else’s answer is going to be no and yes!
    If you are a woman who wonders about her likelihood to develop breast cancer and the test gives a heads up on your high possibility so you can take extraordinary measures to fend it off for your whole life time,your answer will be a resounding YES!
    If your test shows you may be a carrier for an infectious, possible pandemic producing disease, your answers is a resounding NO! Especially after the court orders the info to be made public after the CDC labels you a liability!
    When it comes to science and ethics I like to fall back on the tried and true: just because we can do something does that mean we should? My answer is, I don’t know!
    But can we get the cork back in the bottle once Genie has gotten out, I don’t think so!
    Dave Briggs :~)

  4. #4 Sandra Porter
    December 6, 2007

    You can breathe a sigh of relief about this one:

    If your test shows you may be a carrier for an infectious, possible pandemic producing disease, your answers is a resounding NO! Especially after the court orders the info to be made public after the CDC labels you a liability!

    It won’t happen. Genetic diseases are not contagious. Inherited, perhaps, but not contagious.