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.
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, the New York Attorney General 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.
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Consumer Alert: 23andMe is now bankrupt. What happens to your genetic information? WHEC.com.
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