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Part 3
That’s just the beginning, though. 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). According to 23andMe’s privacy policy, that wouldn’t be an acceptable use of the database. Although 23andMe admits that it will share aggregate information about users genomes to third parties, it adamantly insists that it will not sell your personal genetic information without your explicit consent.
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We’ve heard that one before. Back when Google was first launched, the founders insisted that the company would never sell you out to advertisers. The company admitted that it would share aggregate information about users’ behavior with anyone who ponied up enough money, but the company’s privacy policy promised that “[i]ndividually identifiable information about you is not willfully disclosed to any third party without first receiving your permission.” A decade and a half later, after countless minuscule frog-in-boiling-water changes, Google’s privacy policy is craftily worded, diluting the word “consent” so that it’s implicit in most cases. (There are a few exceptions; the company has graciously agreed not to reveal that you are a homosexual or that you have heart disease unless you explicitly opt in. But in matters not related to your medical conditions, race, ethnicity, sexuality, or your political or religious beliefs, there is no such guarantee.) Not that your consent really matters, implicit or explicit. Google has repeatedly proven that it is more than willing to break its promises and ignore its own privacy rules when it suits.
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Why should we believe that 23andMe’s promises are any more binding? Early signs certainly aren’t encouraging. 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.
Those of us who have not volunteered to be a part of the grand experiment have even less protection. Even if 23andMe keeps your genome confidential against hackers, corporate takeovers, and the temptations of filthy lucre forever and ever, there is plenty of evidence that there is no such thing as an “anonymous” genome anymore. It is possible to use the internet to identify the owner of a snippet of genetic information and it is getting easier day by day.