It was a simple process.
You’d collect a saliva sample, ship it off, and within six weeks, you’d receive a complete ancestral and health history based solely off your spit.
Millions of people across the country participated in 23andMe’s program, which allowed customers to identify and trace their family lineages to specific locations worldwide. This fun and informative service became a popular Christmas gift over the past decade. However, the company has recently fallen on hard times.
Despite having more than 15 million customers, the company failed to attract repeat buyers because most people only used their kits once.
With no significant room for growth and few new products, the company lost more than 99 percent of its $6 billion valuation and is nearing bankruptcy. To combat the losses, founder and CEO Anne Wojcicki slashed the workforce by 40 percent and announced plans to buy back remaining shares. She also reportedly intends to take the company private.
Even so, many 23andMe users are worried about their genetic data being sold. Previously, news outlets reported that Wojcicki was open to outside buyers, potentially including the sale of its assets — such as the genetic data of over 15 million people.
Since then, conflicting reports have emerged, with Wojcicki deciding it’s in the company’s best interest to remain in her hands. The back and forth and uncertainty that surround the company’s future have only worsened people’s fears.
A 23andMe source told Business Insider that its privacy statement protecting customers’ information would stay in place “unless and until customers are presented with a new privacy statement by a new entity.”
This implies that customers would most likely have a chance to opt out if the company was sold, however, it does introduce people to the possibility of outside sources having access to their information if the company is acquired.
University of Iowa law professor and genetics privacy expert Anya Prince recently commented on the issue in an article from Advisory Board saying, “ …if someone had access to that information, and they could identify you, they could learn something about your health.”
This issue has raised privacy concerns for some and has caused many to begin panicking about the possibility of their information being identified and collected for unknown uses by unannounced entities.
Adding to these concerns, 23andMe suffered a mass data breach last October, impacting more than 6 million people. Hackers accessed passwords and logins, ultimately posting customers’ genetic data on the dark web. The company settled over a dozen lawsuits, paying more than $30 million to those impacted.
By way of GINA, or the Genetic Information Nondiscrimination Act, if sold, users’ information cannot be used by insurance companies or employers to discriminate or harass individuals based on their genetic details. However, their information can be used for research purposes due to the fact that direct-to-consumer companies like 23andMe are not protected under Health Insurance Portability and Accountability Act, or HIPAA.
This loophole has recently allowed 23andMe to use the spit samples of former customers who have recently undergone clinical trials to develop new cancer treatment medications, according to Bloomberg.
Customers did have to consent to this usage when first signing up to use their ancestry kits. While some may find it noble that they may play a small part in helping to treat cancer in millions of patients, others may feel gypped that they aren’t seeing any financial reparations if such drugs are approved and taken to market.
If these medicines are sold, 23andMe is set to see a massive boost in profits most likely in the millions, all thanks to help from customers and their $199 purchases.
These issues have left many 23andMe customers angry and on-edge, and as the company’s future hangs in the balance, more questions about privacy and transparency are being raised than answered.