The data you shared with a genetic testing startup like 23andMe is private — for now.
But maintaining that privacy, which rests on your data being kept anonymous and secure, is getting harder, according to privacy experts, bioethicists, and entrepreneurs.
Your DNA data contains highly sensitive information about your health and identity. Everything from your ancestry to your risk of cancer to information about allergies and predisposition to Alzheimer’s are often included in a genetic test report.
Even large pools of anonymized genetic data can theoretically be tied to an individual. For at least the past decade, researchers have demonstrated that by cross-referencing anonymous DNA data with datasets that include personal information, such voter or census rolls, they can correctly “re-identify” significant portions of participants.
Plus, most of the leading genetic testing services allow customers to download their raw genetic data — the As, Gs, Ts, and Cs that make up their genetic code — using their email and profile login.
Privacy experts and bioethicists say all of these issues make the current landscape of genetic testing ripe for potential calamity.