NPR reports:

Last month, Chenedy Wiles finally got around to it.

The 27-year-old traveling nurse spit into a tube and mailed it to 23andMe, where the genetic testing company’s lab examined her DNA and generated a glimpse of her ancestry.

“One of the reasons I decided to get the test is that as an African American, it’s very common for our heritage to get lost,” said Wiles, who lives in Chicago.

Once her results arrived in the mail, it revealed that she was nearly 40% Nigerian. “Which was exciting and cool to see,” she said, “because I always thought I had cousins who were from West Africa.”

After that, 23andMe contacted her regularly about signing up for add-on services, or to have relatives take the test, but she wasn’t interested.

The one-and-done nature of Wiles’ experience is indicative of a core business problem with the once high-flying biotech company that is now teetering on the brink of collapse. Wiles and many of 23andMe’s 15 million other customers never returned. They paid once for a saliva kit, then moved on.

Shares of 23andMe are now worth pennies. The company’s valuation has plummeted 99% from its $6 billion peak shortly after the company went public in 2021.

As 23andMe struggles for survival, customers like Wiles have one pressing question: What is the company’s plan for all the data it has collected since it was founded in 2006?

“I absolutely think this needs to be clarified,” Wiles said. “The company has undergone so many changes and so much turmoil that they need to figure out what they’re doing as a company. But when it comes to my genetic data, I really want to know what they plan on doing.”

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. “For our customers, our focus continues to be on transparency and choice over how they want their data to be managed,” he said.

When signing up for the service, about 80% of 23andMe’s customers have opted in to having their genetic data analyzed for medical research. “This rate has held steady for many years,” Kill added.

The company has an agreement with pharmaceutical giant GlaxoSmithKline, or GSK, that allows the drugmaker to tap the tech company’s customer data to develop new treatments for disease.

Anya Prince, a law professor at the University of Iowa’s College of Law who focuses on genetic privacy, said those worried about their sensitive DNA information may not realize just how few federal protections exist. [Continue reading…]