23andMe, a genetic testing and ancestry tracking company, collects the most personal type of data from its customers: DNA.
Well, after that Data breach to occur in late 2023 and Resignation of all directorsthe company faces an uncertain future, and many customers believe that the genetic information they once willingly handed over could be vulnerable. CEO Anne Wojcicki has also previously said she would consider a potential acquisition of the company, raising concerns among customers about what would happen to their data in the event of a sale.
Wojcicki later clarified that he was not considering a third-party takeover offer and intended to take the company private.
“Anne also expressed a strong commitment to customer privacy and pledged to maintain our current privacy policy, including after the completion of her planned acquisition,” 23andMe said in a statement to CBS MoneyWatch. said.
Eva Galperin, director of cybersecurity at the Electronic Frontier Foundation (EFF), suggested in a social media post about X earlier this month that 23andMe account holders take steps to delete data held by the company.
“If you have a 23andme account, today is a good day to log in and request data deletion,” she wrote.
Other cybersecurity experts say that while users’ data is no longer vulnerable in the midst of corporate disruption, all 23andMe customers should review their privacy policies and decide how and with whom their data will be shared. He emphasizes the need to consider this.
Is my data safe?
Galperin and other cybersecurity experts recommend that account holders take steps to protect their data, including deleting their 23andMe accounts.
Anya Prince, a University of Iowa law professor and genetic privacy expert, told CBS MoneyWatch that “a lot of people are looking at it right now because of concerns about the possibility of a change in ownership.” “But today’s data is no more vulnerable than how 23andMe has been proceeding.”
In addition to sharing data with 23andMe, customers could always consent to 23andMe sharing their anonymized genetic information with third parties for a variety of purposes, including advancing medical research . “But genetic data is so unique that it can potentially be identified. So, while vulnerabilities exist, they are not necessarily unique to where 23andMe is today,” Prince said. he added.
What can I do with my genetic data?
A person’s genetic information reveals much about their family’s and their own health. “So if someone can access that information and identify you, they can learn something about your health,” Prince said.
For example, pharmaceutical companies could better tailor their advertising to individuals.
“If you’re predisposed to diabetes, it may be harmless, just like the products that are sold for diabetes. It may be a nuisance, but it’s not harmful,” she explained.
23andMe says approximately 80% of its customers agree to participate in its research program, which has produced more than 270 peer-reviewed publications that reveal new genetic insights into disease. said.
“Some people are unhappy that the sharing is happening because they might say, ‘We’re paying 23andMe for genetic testing and they’re making money.’ , I don’t want my information to go to companies to advance their research.” And pharmaceutical companies are profiting from my data. It can feel like a personal insult,” Prince said.
Can I delete my data?
Individual account holders may request deletion of their genetic information under the terms of 23andMe’s Privacy Policy.
“If you’re no longer interested, you can download your data and delete your account,” Prince explained.
However, if you have already consented to a company sharing your data in an anonymized manner for research purposes, you can withdraw that consent, but you cannot revoke the data that has already been shared. “You can’t find it in any drug company that’s already shared because it doesn’t have a person’s name attached to it. So there’s nothing to do there,” Prince said.
The process of removing personal data from 23andMe’s database is automated and easy.
“If you are no longer interested in participating in our services, you can delete your 23andMe account at any time directly within your account settings,” the company says on its website.
To do so, you must log into your account and submit a request. The company will then send you an email confirming your data deletion request. You need to check this. After that, the removal process will begin.
Jason Kelly, director of activities at EFF, urged people to “think carefully about how much data they are giving away when using services like this.”
He noted that few, if any, people in his organization have used ancestry tracing services.
“In general, sharing such data with third parties should be taken seriously,” he said. “For a long time, people were unable to know what information they were divulging and how it was being used. I am now more aware that it can be dangerous.”
The company’s stock, which had traded above $16 in 2021, closed Monday at 29 cents.