Joel Riley

Joel Riley

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23 and me - privacy concern

AMelmagazine writer set out to get his DNA tested by 23andMe, and then to see if he could get the DNA testing company to send it back. After getting his results, he contacted the company to attempt to get them to delete his information and send him back the saliva sample. After reaching 23andMe both by email and phone, he learned that they can't return samples once they've been sent to the lab and processed. Still having concerns about things like the security of his sample and if the DNA information could ever be given to law enforcement, he contacted attorney Joel Winston, who specializes in privacy law. From Winston he learned that DNA testing companies work with pharmaceutical companies, and sell them aggregated data from customers that's then used for genetic research. He also learned that law enforcement with a warrant could likely get the DNA information, and that while health and life insurance companies are for now not allowed access to the data, life insurance companies can ask if you took a DNA test, which could show predisposition to certain diseases, and terminate your policy if you did take such a test and lie and tell them that you didn't. This all convinced the writer that he wanted his DNA sample destroyed, which can be requested and which 23andMe did. However, he learned that regulations require that they keep his DNA information in their system for 10 years


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