Genetic testing company 23andMe, a former Silicon Valley Darling, worth $6 billion, filed for Chapter 11 bankruptcy protection late Sunday, ready to sell for sales businesses. CEO Anne Wojcicki, who co-founded the company in 2006, also resigned after months of failed attempts to bring the company privately.
As uncertainty in the company’s future peaks, all eyes are on the deep personal (possibly valuable) genetic data that 23andMe has. Privacy advocates have long warned that the risk of delegating genetic data to any institution is dual – the organization may not be able to protect it, but can also hand over customer data to new entities they may not trust and do not choose.
California Attorney General Rob Bonta reminded consumers in a Friday alert that Californians have the legal right to require organizations to delete their data. 23 Customers in other states and countries largely do not have the same protections, although there is also a right to delete health data in Washington’s My Health Act and the EU’s General Data Protection Regulation. Regardless of residency, all 23AndMe customers should consider downloading anything they want to keep from the service and should then try to delete their information.
“This situation does make it still not possible for the U.S. to have no national health privacy laws, unless you live in California or Washington, there is no national health privacy laws in the U.S.,” said Andrea Downing, an independent security researcher and co-founder of the patient-led digital rights nonprofit collective. “At the same time, we continue to develop our understanding of how genetic information is valuable, but also has unique vulnerability.”
John Verdi, senior vice president of future policy for Privacy Forum, said the new owner of 23andMe can modify the company’s privacy policy for new customers and new data collection companies, but the data it has collected from existing customers complies with existing terms. “The company has a legal obligation to collect information in accordance with current policies,” he said.
Nevertheless, the researchers stress that in practice, such a huge transition will create real data exposures beyond the control of AndMe customer. “I think these privacy policies, especially in the context of venture capital and private equity acquisitions – paper that is not worthy of their printing,” said Kenn White, a long-time security researcher and data privacy advocate. “For the average person using these services, you are almost yours. My advice is to ask for your data to be deleted as soon as possible”
To delete your genetic data through 23andMe’s website, log in and go to set up in your profile. Scroll to 23andme data Then click view. At this point, you have the option to download a copy of the genetic information. Then scroll to Delete data Then click Permanently delete data. After starting the process, you will receive an email from 23andMe to confirm. Click the link in the email to complete the deletion process. Additionally, if you previously authorized the company to retain it, you can instruct 23andMe to destroy the biological sample used to extract DNA data. go set up and then Preference.
