23andMe - Is It Worth It?

I saw a bit on the Today Show this morning about the 23andMe test. For $99 you
get a profile of genetic predispositions, health traits, possible drug reactions, ancestors, and more through gene sequencing. Too good to be true? Susan, the guru oxalate researcher, just got the software to analyze test results from an oxalate perspective and is calling for people to submit their reports for research and analysis.

My sister will be receiving her Ph.D. in biochemistry this fall, and this is
what she had to say about the test:

1. There is no such thing as a genotype-to-phenotype conversion; i.e. having one
genetic mutation in one gene does not automatically flag you for a particular
disease. The nature vs. nurture argument comes into play here. Risk is
determined by ancestry as well as epigenetics (stuff that affects gene
expression that isn't the actual DNA itself) in addition to genotype.

2. Risk is relative. Risk is also absolute. You might be less susceptible to
risk for a certain disease compared to an age/gender/ethnicity matched
population, but if you have familial history, your absolute risk is much higher.

3. Since this is a company selling a product to consumers, I am wondering if
they have any regulation as far as HIPPA goes. For example, if you get some
crazy result back indicating that you have a significantly greater risk for
heart disease, would a (life) insurance company or employer somehow be able to
have access to this information? It might seem farfetched, but it never ceases
to amaze me how much information gets leaked out there... Call me paranoid

All in all, this is probably something you should consider as a "fun and
interesting" thing to do rather than a roadmap to your future health. One upside
to these tests is that the more people who use them, the more data can be
acquired for research which might contribute to great scientific advances in the
future. I think in the end, your feelings will remain the same about your
general health, which will be "eat healthy and get plenty of exercise." If
that's worth $99 to you, then go for it!

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My sis also mentioned that a test like this used to cost over $1000. So now that it
is available for $99, and I have a bunch of unexplained Dx, including
hyperoxaluria, I'm wondering if I should order the test and then have Susan
analyze the results, keeping all of what my sister said in mind.  

I guess I'm on the fence about it, but leaning more toward doing it, especially since I have a contact who can read the results in a way that would be pertinent to my specific health conditions, some that are a mystery to the conventional docs. On the one hand, $99 sounds like an unbelievable deal for something that used to cost $1000. I'm desperate for answers about my current health status (hmm, I guess I'm the target market!). Maybe the results would show one little thing that could lead to another that could lead to an answer. On the other hand, I want the source of info to be credible, and then there's the HIPPA thing, which they say on their website that they are compliant and secure...should I trust that? I'll have to ponder this one some more before I spend the $$ on a test that might not get me anywhere but $99 poorer. But it sure sounds interesting.

Another thing to think about that a friend of mine pointed out: Am I prepared to "open up a door that can never be shut?" Knowing too much but not knowing enough (i.e. whether or not something is definitely going to happen) is overwhelming and could add extra stress on my plate. Stress certainly won't help chronic illness; in fact, it would only add to it. Don't want another ulcer!