The trust problem with 23andMe

It wasn’t the best Christmas gift ever. My sister and father initially refused to spit in a test tube, saying they doubted the science behind it. They added that even if it was sound, they didn’t want to know what kind of genetic health problems might be coming their way. My father-in-law called it “creepy.” 

I, on the other hand, valued finding out that one of my small children was apparently prone to deep vein thrombosis, while another should be on the lookout for age-related macular degeneration later in life. (Bring out the compression socks and sunglasses!) 

I still believe in the power of genetic data. But this week, I deleted all of my family’s genetic information from 23andMe’s website after it filed for bankruptcy. The former Silicon Valley darling has had many ups and downs over the years, but a devastating data breach, ongoing financial struggles and boardroom chaos all proved too much.

The lesson for CEOs, of course, is the importance of trust, and how quickly it can be eroded. The reality is that all of my family’s genetic data went on the auction block the moment 23andMe filed for bankruptcy, and that information could be used by the final buyer in any number of ways I won’t like. The next owner will have to “comply with applicable law with respect to the treatment of customer data,” the company said in a statement. But so many people rushed to the company’s website to delete their information on Monday that the login portal crashed.

It makes me wonder if some data doesn’t really belong in private hands. Trying to profit off people’s genetic data was always going to be a challenge, especially after a 2013 Supreme Court ruling that human genes are not patentable. The value proposition for 23andMe customers was limited: a one-and-done transaction that gave users a bit of information that mostly wasn’t actionable. I haven’t given them money since 2012. 

The decision to delete our data wasn’t an easy one. My kids can redo their tests in the future with another company, or find some other way to understand their genetic makeup. But my parents, husband, and in-laws have since died. That means that I’ll never get their genetic data back—another loss I’ll have to live with because the company I relied on couldn’t stay in business.

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Contact CEO Daily via Diane Brady at [email protected]

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From the analysts

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Around the watercooler