23andme is bankrupt, and making it difficult for customers to delete accounts

As we predicted months ago, genetic testing company 23andme has declared bankruptcy. Its stock, which once cost $320 per share, is now worth 77 cents. For genealogists who tested their DNA using 23andme, there are worries about what will happen to their genetic data. There are things we can do to protect our data, but there are also many uncertainties.

What happened? As documented in this newsletter and on the EasyGenie YouTube channel, 23andme was mismanaged for years by a CEO whose main qualifications seemed to be deep family ties to Silicon Valley billionaires. 

The company reportedly sold its DNA test kits at a loss for years, with the CEO convinced that genetic samples from millions of ordinary people could be spun into pharmaceutical gold. It never happened. There were multiple rounds of layoffs, and the CEO’s hand-picked board resigned last September.

While customers were mainly interested in genetic genealogy, the company jettisoned many genealogy tools in favor of questionable health features that are still featured prominently on its website:

Regulators have long had issues with 23andme. In 2013, the FDA issued a warning letter over its marketing practices. This month, the California attorney general issued a lengthy warning about 23andme, and the steps consumers can take to protect their data.

The California AG’s letter outlines the steps to download and then delete data. Unfortunately, if there is a problem with your 23andme account, you will have to go through an endless support queue. This is what I saw this afternoon when I encountered a problem:

Fortunately, there are other steps you can take to restrict how your genetic information is used. From the account settings page, you can revoke any research and data sharing consents at the bottom of the page. You can also require 23andme to destroy your DNA samples:

What will happen to 23andme? Under Chapter 11 bankruptcy, qualified bidders could indicate interest in purchasing 23andme’s assets, the most valuable of which is our data. I worry that an entity with questionable motives - think insurance companies, security agencies, or competitors looking to force users into overpriced subscriptions - will try to take over our genetic information. The CEO herself wants to buy her company back, but there is no guarantee:

“If multiple qualified bids are received, 23andMe will hold an auction for those assets. 23andMe said any buyer will be required to comply with the law regarding the treatment of customer data. Transactions will still be subject to regulatory approvals.”

Stay tuned for updates in the Spring as this important story unfolds.