ATLANTA – Georgia’s attorney general is issuing an urgent warning to anyone with 23andMe accounts after the company filed for bankruptcy earlier this week.
Officials say your personal information could be up for auction.
What we know:
Biotech company 23andMe filed for bankruptcy Sunday after years of financial struggles stemming from its direct-to-consumer genetic testing services.
The company announced it would seek a new buyer—raising questions about what happens to the genetic data of its 15 million users.
Attorney General Chris Carr’s consumer protection division issued a warning Tuesday saying that information could be sold to the highest bidder— if account holders don’t act quickly.
What we don’t know:
It is unclear who would be bidding on the future of the company or any information it owns.
What they’re saying:
“Information has always been vulnerable but now… it’s up for sale essentially…that is the valuable part of that company,” Emory Health Sciences Genetics Counselor Emalyn Cork told FOX 5.
23andMe is not your typical bankruptcy filing because its biggest asset is the DNA samples of millions of people who’ve created accounts over the years.
Cork says the bankruptcy filing has only renewed longstanding concerns about the future of the personal data of its 15 million users.
Emory University Law Professor Dr. Ifeoma Ajunwa has been a skeptic of direct-to-consumer testing services for years—publishing two papers on genetic data and civil rights including one specifically about 23andMe.
“All that company’s assets are up for sale and could be transferred to the highest bidder,” Ajunwa said.
She says unlike health care providers, the company isn’t bound by HIPAA—the federal law that protects patients medical privacy.
“There is a gray area there of whether this information is going to be shielded,” she explained.
Though there are limited federal protections under the Genetic Information Non-discrimination Act—which prevents employers and health insurers from discriminating based on your DNA—Cork says the law really hasn’t kept up with the rapid growth of direct to consumer DNA testing.
“How easily, how cheaply we’re able to do it has totally outpaced the legislation that protects that data for people,” she added.
What you can do:
Ajunwa recommends deleting your account and reading the terms of service to see if it offers an automatic “hard” delete.
If not, she says users should reach out to the company directly to request a “hard” delete of your personal data.
Instructions to delete your account are relatively simple. Below you’ll find directions to get started:
- Go to 23andMe.com and sign in to your account.
- Click on your profile in the upper righthand corner of the site, then click “Settings.”
- Scroll to the section at the very bottom of the page called “23andMe Data” and click the oval button that says, “View.”
- Check the boxes of any data you would like to download and click “Request Download.” This step is optional and can take up to 30 days. You can continue with the following steps while you wait.
- Scroll to the bottom of the page and click the red button that says, “Permanently Delete Data.”
- You will receive an email with the subject line “23andMe Delete Account Request.” Open it, and click the button that says, “Permanently Delete All Records.” Your data will not be deleted unless you complete this step.
For additional information on how to delete your 23andMe account, visit the following page on the company’s website: Requesting 23andMe Account Closure.
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The Source: This story is an original report by FOX 5’s Joi Dukes. Information in this report came from the Georgia Attorney General’s Office and 23andMe’s website. Previous FOX 5 Atlanta reporting was also used.
