23andMe and the Death of Genetic Privacy

23andMe promised revolution. It gave us risk, betrayal, and bankruptcy.

On October 23, 2024, I wrote about the collapse of 23andMe. You can read that article here.

In 2006, a Silicon Valley startup invited people to spit in a tube and mail it in, pledging a revolution in personal genetics. That company, 23andMe, promised to democratize DNA—to give ordinary individuals unprecedented access to information in their genes. Nearly two decades later, 23andMe has indeed made genomics mainstream, selling over 12 million at-home DNA test kits since its launch. But along the way it has also accumulated a fraught legacy of ethical quandaries, regulatory battles, and privacy scandals that cast a harsh light on the direct-to-consumer genetics industry. Once hailed as a pioneer, 23andMe is now a cautionary tale of how lofty ideals can be undermined by dubious practices and erosion of public trust.

Origins of an Ambitious Idea

23andMe was co-founded in 2006 by Anne Wojcicki along with Linda Avey and Paul Cusenza, at the dawn of the personal genomics era. Wojcicki—a Yale-educated biologist turned Wall Street healthcare analyst—had grown disillusioned with a medical system that, in her view, profited more from treating illness than preventing it. Inspired by patient advocacy movements demanding greater control over her health decisions, she envisioned a platform to put individuals in charge of their own genetic data and to “crowdsource” medical research. “I started to realize that if you really wanted a different type of healthcare system, you had to have it driven by the people and for the people,” she later said of 23andMe’s founding idea.