A friend has recently had a chilling experience concerning the commercial genetic testing that’s widely available now (more about her below). Here’s an excerpt from a 2013 Scientific American article analyzing what’s going on in that field. It appears that some, perhaps all, companies offering “free” or low-cost genetic testing may, in reality, be engaging in massive data gathering about their customers – and, by extension, those customers’ relatives.
Since late 2007, 23andMe has been known for offering cut-rate genetic testing. Spit in a vial, send it in, and the company will look at thousands of regions in your DNA that are known to vary from human to human—and which are responsible for some of our traits.
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What the search engine is to Google, the Personal Genome Service is to 23andMe … 23andMe reserves the right to use your personal information—including your genome—to inform you about events and to try to sell you products and services. There is a much more lucrative market waiting in the wings, too. One could easily imagine how insurance companies and pharmaceutical firms might be interested in getting their hands on your genetic information, the better to sell you products (or deny them to you).
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Even though 23andMe currently asks permission to use your genetic information for scientific research, the company has explicitly stated that its database-sifting scientific work “does not constitute research on human subjects,” meaning that it is not subject to the rules and regulations that are supposed to protect experimental subjects’ privacy and welfare.
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This becomes a particularly acute problem once you realize that every one of your relatives who spits in a 23andMe vial is giving the company a not-inconsiderable bit of your own genetic information to the company along with their own. If you have several close relatives who are already in 23andMe’s database, the company already essentially has all that it needs to know about you.
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While the FDA concentrates on the question of whether 23andMe’s kit is a safe and effective medical device, it is failing to address the real issue: what 23andMe should be allowed to do with the data it collects. For 23andMe’s Personal Genome Service is much more than a medical device; it is a one-way portal into a world where corporations have access to the innermost contents of your cells and where insurers and pharmaceutical firms and marketers might know more about your body than you know yourself.
There’s more at the link.
I was reminded of this by my friend’s recent experience. She sent off for a gene test, because she wanted to know more about her genetic heritage and its implications. The test came back with some indicators of potential (not actual) concern for inherited medical characteristics that might possibly (not certainly) affect her later in life. Within two weeks of receiving the results, she began to receive advertisements for medical products and services related to those characteristics. They came via snail mail, e-mail and pop-up advertisements when she visited certain social media sites. It’s clear that she’s being targeted by advertisers – but how did they learn she was a potential client? The only possible way she can think of is that the genetic testing company sold her information to the advertisers.
She’s furious, of course; but the small print of the form she submitted to request the testing has “weasel words” that can, upon careful examination, be interpreted to allow the company to market her information. She didn’t read it carefully at the time. Most of us don’t bother when it comes to something like that, particularly when the important bits are clouded in masses of verbiage and buried deep in clauses about other, less important things. She’s consulting a lawyer, but he’s already pointed out that she’ll need deep pockets to pursue a case for damages, because the contract she signed will make it difficult to prove deception.
It’s an ethical and moral minefield out there, folks. Be careful what you sign, what you agree to, and with whom you share the most intimate information about yourself, your ancestry, and your future medical and life prospects. It may come back to bite you in later life. For example: need life insurance? You might find your policy carries a rider in the small print, explicitly excluding certain genetic conditions or predispositions – all of which you have. How did the insurance company know that, without being told by you? I’ll give you three guesses, and the first two don’t count. As the article above points out, even if you’ve never been genetically tested yourself, it may be that enough of your relatives have that the insurance company can – and will – make an educated, reasonably accurate prediction about you.
What’s more, that policy will be tailored specifically to your medical profile. Your wife, or your co-worker, might apply to the same company for similar insurance, and find that their medical exclusions differ from yours, because the company has their genetic profiles, too. Legal? Possibly not, under present law. Preventable? Also probably not. Money talks, and when a lot of money is at stake, those risking it will do anything and everything possible to preserve their investment – even if it means putting you at a disadvantage.