23andMe Sent Me a Kit in 2009. It Sat Unopened for 2 Years.

This week in Pedersen's POV, our senior editor weighs in on the data privacy ramifications of 23andMe's impending collapse.

Amanda Pedersen

October 14, 2024

3 Min Read
Pedersen's POV graphic featuring MD+DI Senior Editor Amanda Pedersen and her quote about 23andMe. Pedersen's POV is a weekly op-ed about medtech.
Pedersen's POV is a weekly opinion column that addresses various aspects of the medtech industry, including the good, the bad, and the controversial.

For two years, a small white box sat on my desk, its sleek design and colorful graphics beckoning me. The simple gray ‘Welcome to You’ message and the green-and-magenta 23andMe logo promised answers to questions I wasn't sure I wanted answered.

The direct-to-consumer genetic testing company—now apparently on the brink of collapse—had sent me one of its tests to try for myself somewhere around 2009. I was excited when I first received the test, but a deep-seated anxiety wouldn’t let me open it. Even after interviewing a company executive who touted the benefits of arming myself with information about my genetic predispositions to certain diseases, I still had too many reservations.

23andMe_test_kit.png

Each time I glanced at that box, I felt a tug-of-war between curiosity and fear. Did I really want to arm myself with more data about my body's potential ticking time bombs?

My family history had already made it clear that breast cancer was something I should be concerned about, and my own medical history with ulcerative colitis told me I had a high risk for colorectal cancer. Why would I need a test that would only make me more paranoid?

I was also skeptical about the company’s direct-to-consumer approach that seemed to me to be skirting around FDA and Medicare. In 2010, FDA cracked down on 23andMe and four other genetic testing companies for selling unapproved medical devices. The agency argued that the tests were medical devices intended for diagnosing or treating diseases. 23andMe disagreed, maintaining that its tests were “informational and educational.” But in 2013, FDA issued a warning letter, voicing concerns that patients might make critical health decisions based on unreliable data.

Finally, nagging questions kept running through the back of my mind: What happens to my data if I do take the test and send it in? What if 23andMe gets hacked? How will the company protect my privacy?

Eventually, the unopened test kit ended up in the trash.

Now, with the company facing delisting from Nasdaq, losing all its independent board members, and battling legal challenges over data breaches, the once $6 billion behemoth is teetering on the edge of collapse. The big question looms: what will happen to the genetic data entrusted to 23andMe if it goes under or is sold?

23andMe appears to be dodging that very important question.

“Andy Kill, a spokesperson for 23andMe, would not comment on what the company might do with its trove of genetic data beyond general pronouncements about its commitment to privacy,” Bobby Allyn, an NPR correspondent, wrote earlier this month.

For years, I second-guessed my decision to toss the 23andMe kit instead of sending in my DNA sample. But now, as the company's future—and control of its vast trove of data—hangs in the balance, I know I made the right choice. Some things are better left unknown.

About the Author

Amanda Pedersen

Amanda Pedersen is a veteran journalist and award-winning columnist with a passion for helping medical device professionals connect the dots between the medtech news of the day and the bigger picture. She has been covering the medtech industry since 2006.

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