WASHINGTON – The attorneys general for the District of Columbia, Virginia and Maryland have issued a warning to anyone who has been a customer of 23&Me to delete their data.
This comes after the genetic testing company announced earlier this week that it is heading toward bankruptcy. So, what legal rights do you have if your information is sold?
The backstory:
Curiosity about one’s family history has led roughly 15 million people to use 23andMe.
The company says that 80% of users have consented to having their data used for research purposes.
However, with the company looking to sell its assets, customers will have no say in where their private information ends up.
What they’re saying:
DC’s Attorney General, Brian Schwalb, issued a statement saying, in part, “District residents have a legal right to protect their sensitive information and data.”
He urges users to take action and demand that their genetic information be deleted or destroyed.
The Attorneys General of Maryland and Virginia have issued similar notices. While these states are two of the 10 that have genetic data privacy laws, those laws only apply as long as 23andMe’s current privacy policy remains in effect.
23andMe files for bankruptcy: What customers should know
They say that depending on who purchases the company, your personal information may no longer be protected.
“When you give your genetic material to these private companies, it’s not considered a medical treatment or care, so it’s not protected the same way that your medical records would be through a private company,” said Donte Mills, attorney at Mills Legal.
“The concern is, if the data is purchased by someone who wants to do something with it in regards to research or development or some kind of genetic testing, they’re going to have the ability to do that and the people whose information they have, they’re not going to have any power or control to stop them,” Mills added.
What’s next:
While deleting is encouraged, 23andMe might not make it easy as your data is an asset to them in the bankruptcy process. D.C. AG Schwalb says should you have issues, contact their offices.
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