“It’s one thing for NIH to ask people to donate their genome sequences for the higher good,” Peter Pitts, president of the Center for Medicine in the Public Interest, told NBC News. “But when two for-profit companies enter into an agreement where the jewel in the crown is your gene sequence and you are actually paying for the privilege of participating, I think that’s upside-down.”
Typically, 23andMe uses and shares its customers’ genetic data after it has been pooled together and stripped of any information that would allow anyone to trace back its origins to a single person. But more recently, the company has also asked customers for added permission to share their individual genetic and self-reported data with outside sources for research. Though this data is said to be stripped of information that would prevent identification, such as your name or date of birth, even 23andMe has warned it cannot “provide a 100 percent guarantee that your data will be safe” in the event of a breach.
Experts have feared that data leaks from genetic testing companies such as 23andMe would allow insurance companies to screen out people with risky genes, regardless of genetic privacy laws.