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Deletion Is Hard to Do

Getting your genetic data deleted isn't easy and may not even be possible, writes Bloomberg's Kristen Brown.

She has sent her saliva to Ancestry.com, 23andMe, and Helix for analysis, and shared her genetic information with others, but writes at Bloomberg that she has become concerned with how much she has shared and decided to contact the genetic testing companies to have her information deleted and samples destroyed.

While Brown writes at Bloomberg that she ran into some snags getting the process started at some of the firms — a customer service representative who'd never deleted an account at Ancestry.com and waiting for the rollout of a new privacy policy in wake of Europe's data-protection regulations at 23andMe — she adds that learned that the companies actually cannot fully delete her data.

US federal law, she says, actually prevents labs from doing so. Clinical Laboratory Improvement Amendments regulations require labs to save some de-identified data as a quality control measure. That way, if there's an issue with testing, regulators can figure out what went wrong.

"It's a lesson we're destined to keep learning: Once you share something online, you can't really ever unshare it," Brown writes.