ROCHESTER, N.Y. – This Consumer Alert concerns the safety of your genetic data. On Sunday, 23andMe filed for Chapter 11 bankruptcy protection, and the company will be sold to the highest bidder. Now, New York Attorney General Letitia James is sharing guidance on protecting genetic data in the wake of the bankruptcy filing.

In a recent interview, weeks before the announced bankruptcy, News10NBC’s Deanna Dewberry asked Ruth Tennen, 23andMe’s senior product scientist, about the controversy surrounding the company and questions about the safety of genetic information.

“So, I’m not the best person to speak to that. I can say that protecting our customer’s privacy is a huge priority for us and we are continuing to be committed to our mission to help people access, understand, and benefit from the human genome,” Tennen said.

Tennen’s failure to directly answer the question looms large on Monday as the company prepares to be sold. While company leaders vow to sell 23andMe to an entity committed to protecting customer data, there’s little to keep the new owners from doing as they will with the genetic information after the purchase.

23andMe has the genetic data of 15 million customers, not patients, meaning they don’t have the clear privacy protections provided by HIPAA. The company suffered a huge cybersecurity breach two years ago that put the data of 7 million customers at risk and paid out $30 million in a class action lawsuit.

Despite the company’s uncertain future, Mathew Knowles, the father of global superstar Beyoncé, has been working as a brand ambassador for 23andMe since last fall. As a breast cancer survivor, he strongly advocates for genetic testing after discovering he had the BRCA-2 variant, a gene mutation associated with breast and prostate cancer that can be inherited.

Deanna Dewberry: “You have two famous daughters of course, Solange and Beyoncé, you’ve got granddaughters, how important is this information for them?”

Mathew Knowles: “Well it’s critically important because they have been genetic tested and that information knowing that, knowing if they’re predisposed which fortunately they’re not but having that information is important.”

While there is no doubt that knowledge is power and having genetic information can help make vitally important decisions about health, the question remains – until there are federal laws limiting or forbidding the sale of genetic data, should any private company be entrusted with it?

In the meantime, if you’re a 23andMe customer, AG James is encouraging you to delete your data. To do that, go to the company’s website and select “Settings” under your account profile. Scroll down to the section titled “23andMe Data” and click “View.” You’ll then be asked to verify your age. Then the next screen will give you the option to delete your 23andMe account. You’ll then get an email asking you to confirm your deletion request.

Here is the full statement from the New York Attorney General’s Office:

New York Attorney General Letitia James today issued a consumer alert to customers of 23andMe, a direct-to-consumer genetic testing company, urging them to take action to protect their data. 23andMe collects and analyzes people’s genetic code and uses DNA samples to help people trace their ancestry or detect personal health risks, among other factors. The company filed for bankruptcy and announced plans to sell its assets. Due to the trove of sensitive consumer data 23andMe has amassed, Attorney General James would like to remind New Yorkers that they are able to request that 23andMe delete their personal data and destroy any samples of genetic material held by the company.

New Yorkers’ genetic data is sensitive information that must be protected at all costs,” said Attorney General James. “23andMe’s bankruptcy announcement is concerning and I am urging New Yorkers to take action to safeguard their data. New Yorkers can follow instructions offered by my office to delete their data or destroy any DNA samples held by 23andMe. Anyone experiencing issues deleting their information stored with 23andMe should contact my office.

Attorney General James is offering New Yorkers tips on how to delete their data that is stored with 23andMe or destroy test samples. Consumers can delete their account and personal information by taking the following steps:

• Log into your 23andMe account on their website. 
• Go to the “Settings” section of your profile.
• Scroll to a section labeled “23andMe Data” at the bottom of the page. 
• Click “View” next to “23andMe Data.”
• Download your data: If you want a copy of your genetic data for personal storage, choose the option to download it to your device before proceeding.
• Scroll to the “Delete Data” section. 
• Click “Permanently Delete Data.
• Confirm your request: You’ll receive an email from 23andMe; follow the link in the email to confirm your deletion request. 

If you previously opted to have your saliva sample and DNA stored by 23andMe, but want to change that preference, you can do so from your account settings page, under “Preferences.”

If you previously consented to 23andMe and third-party researchers to use your genetic data and sample for research, you may withdraw consent from the account settings page, under “Research and Product Consents.” Attorney General James encourages New Yorkers who experience issues deleting their data with 23andMe to contact her office by filing a complaint online.

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