CHARLOTTE, N.C. — Many customers are questioning the safety of their DNA information after a popular genetic testing company declared bankruptcy.
Earlier this week, 23andMe announced it was filing for Chapter 11 bankruptcy, as it works toward facilitating a sale. This comes nearly two years after the company experienced a major data breach.
The business is widely known for using DNA to help families identify genetic relatives.
In an open letter, 23andMe says customer’s genetic data will remain protected amid the bankruptcy, stating "any buyer will be required to agree to comply with our privacy policy and with all applicable law with respect to the treatment of customer data."
But several government officials, including North Carolina Attorney General Jeff Jackson, are urging people to delete their data immediately.
Check Point Software Technologies Security Architect Manager Aaron Rose is a 23andMe customer.
Rose said he understands why some people might be skeptical about the safety of their data.
“The question we have now is what is going to happen to the data” Rose said. “Unfortunately, we have more questions than we do answers, because we don't know how this is going to play out."
“If you follow a traditional bankruptcy proceeding, this happens unfortunately quite often with businesses. They have debts they need to pay, settle the debts with their creditors and in order to do that they have to sell off assets,” Rose said.
In some bankruptcy cases, Rose said the entire company can be purchased as one whole entity.
“So that’s always a possibility [that] someone is going to purchase it and continue the services, research, everything 23andMe does,” Rose said.
“But typically, in a bankruptcy proceeding, they’re going to pull apart the business and sell off different assets individually and that’s what’s making the majority of people very nervous, including myself. It is a bit of a wake-up call here. This is something we've never seen before. Truly immutable data, data that could be used in a variety of different ways, whether it be commercial or other purposes, so there are a lot of concerns," Rose said.
Rose recommends customers going into their 23andMe account first to review the data.
“Go to your settings, review the consent you gave,” Rose said. “Did you consent for them to share this with third parties for other research purposes, that’s very important.”“Go to your settings, review the consent you gave,” Rose said. “Did you consent for them to share this with third parties for other research purposes, that’s very important.”
Debbie Thurtle-Schmidt is assistant professor of biology at Davidson College.
Thurtle-Schmidt said advancements with science and research add to the uncertainty some may be feeling about what could happen with their genetic data.
"We don't even know what could be done with it 10 years from now,” Thurtle-Schmidt said. “It's like my Social Security number that can never change, I think that's part of what's making people alarmed.”
Although some people are opting to delete their 23andMe data and accounts, others are taking a different approach.
Katie Grafer serves as president for the Mecklenburg Genealogical Society.
As a teenager, Grafer was eager to learn about her ancestry, motivating her to become a professional genealogist.
"Help people with their genealogy research when they're stuck," Grafer said.
Grafer also used the 23andMe site to assist her with learning more about her family tree.
"I would only use it as a compliment to the actual paper research,” Grafer said. “It helps solidify what you find in documents, because there's always room for error in a document. [The document], it's only as good as the person who created it."
Overall, Grafer is not troubled by the bankruptcy filing.
“I know the data is still there. All the information they’ve put out [is saying] they’re not planning to go out of business entirely. Hopefully, changing hands to somebody who can more responsibly handle the data,” Grafer said.
Grafer said she’s taken security precautions on the 23andMe site and is comfortable keeping her account.
The genealogist feels it’s important to review your account settings, so you'll know whether you’ve opted into sharing your data with other parties.
“I double-checked all my permissions and made sure they’re the ones I want set,” Grafer said.
For those choosing to delete their data, Grafer said there are other methods like historic newspapers and census and naturalization records to help with building a family tree.
"There's so much more you can do beyond DNA, and it's really worth it, so you can truly understand who you are and how you got here,” Grafer said.
Some experts are also recommending 23andMe users download their data from the account in the event that information is needed in the future.