AILSA CHANG, HOST:
The genetic testing company 23andMe went from biotech superstar to the brink of collapse. Its most valuable asset might be its DNA data. NPR's Bobby Allyn reports on what might happen to the genetic information of millions of people.
BOBBY ALLYN, BYLINE: It was an idea that caught on. Pay about a hundred bucks for a saliva kit and, weeks later, learn all about your ancestry. The company behind this, 23andMe, was a hit. It was worth billions, Oprah raved about it and countless people took to social media to share their experience, like TikToker Danielle Edwards (ph).
(SOUNDBITE OF ARCHIVED RECORDING)
DANIELLE EDWARDS: OK, I did it y'all. I finally took my 23andMe kit. Whew, Jesus. All right, spitting in a tube, so I'm concentrating. I'm trying to think about anything but what I have to do, which is spitting in this tube.
ALLYN: More than 14 million people spit in a 23andMe tube. People were holding spit parties. The company was part of the zeitgeist. But there was one big business problem - nobody needed to do a 23andMe test twice. It was one and done. And now 23andMe's stock is worth pennies. Financial news networks like CNBC have been blaring the news.
(SOUNDBITE OF ARCHIVED RECORDING)
UNIDENTIFIED REPORTER: It has since lost 99.9% of its value from its $6 billion market cap peak.
ALLYN: Then there were two other big blows. Last year, the company was hit with a major data breach of customer passwords. And last week, its entire board of directors resigned. Some analysts say 23andMe could go out of business by next year, which raises the question - what's going to happen with the genetic data it has from millions of people? Even if the company goes under, that data could change hands. That may surprise some customers.
ANYA PRINCE: They might believe that the information is more protected than it actually is.
ALLYN: That's Anya Prince. She's a law professor at the University of Iowa's College of Law who focuses on genetic privacy. She says federal health privacy protections like HIPAA don't apply here since 23andMe is outside of the health care realm. What the company does depends on what customers agreed to when they signed up for the service. Some states, like California and Florida, do give consumers rights over their genetic data.
PRINCE: If customers are really worried, they could ask for their samples to be withdrawn from these databases under those laws.
ALLYN: When I asked 23andMe what it plans to do with all the genetic data if it goes out of business, a spokesman wouldn't say. But he did mention a partnership with pharmaceutical giant GlaxoSmithKline, or GSK, which has been analyzing the data to try to find medical breakthroughs. 23andMe says 80% of customers opted into this kind of research when they signed up. The company says the data is anonymous. Prince thinks if people now are second-guessing that decision, they might be out of luck.
PRINCE: I couldn't go to GSK and say, hey, my sample was given to you - I want that taken out - if it was anonymized, right? Because they're not going to reidentify it just to pull it out of the database.
ALLYN: The 23andMe spokesman said the company is committed to being transparent with whatever happens to customer data, saying its core value is, quote, "behind every data point is a human being."
Bobby Allyn, NPR News. Transcript provided by NPR, Copyright NPR.
NPR transcripts are created on a rush deadline by an NPR contractor. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.
