Who’s Peeking at Your Genes? Direct-to-Consumer Genetic Tests and Your Privacy

JulieBergerBy Julie Burger

If you want to get a peek at your own genes, there are now several companies that will help you look: 23andMe, Navigenics, and deCODEme offer direct-to-the-consumer genetic testing. For a not-so-nominal fee combined with a sample of your DNA (spit, a cheek swab) the companies will tell you whether you are more or less likely to get a certain disease, or (less helpfully) what kind of ear wax you have and what color your eyes are. Questions over what the company will do with the information, what the consumer will do with the information, the quality of the information and the test, and whether this is a good use of a health resource have all been raised.

But what if you don’t want to know what’s in your genes? Or what if someone else wants to peek but you don’t want them to—do they need your consent?  The answer turns on where you live and who’s looking. A recent federal law prevents your health insurer and your employer from looking in many circumstances. Other than that, however, your genes may not be as secret as you thought. There are currently only 11 states that prevent someone from testing your genes without your consent:11 States with Informed Consent

All of these have public interest exceptions such as for solving crimes, identifying bodies, and determining who’s the daddy (or mommy). Most of these laws also have an exception that allows research to be conducted on your genes, without your consent, as long as your name is not on the tissue containing the genes. Turns out, even if you don’t want to look, someone else might be peeking at your genes.

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