What is the company’s plan for all the data it has collected since it was founded in 2006?
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. For instance, the Health Insurance Portability and Accountability Act, also known as HIPAA, does not apply to 23andMe since it is a company outside of the health care realm.
“HIPAA does not protect data that’s held by direct-to-consumer companies like 23andMe,” she said.
Although DNA data has no federal safeguards, some states, like California and Florida, do give consumers rights over their genetic information. “If customers are really worried, they could ask for their samples to be withdrawn from these databases under those laws,” said Prince.
I’ve been curious about these services but never did one because I was concerned about exactly this sort of thing. Your genetic data can’t change, and having it leak to the Internet is permanent and irreversible.
Unfortunately there’s no DIY genomic sequencing setup we can get into, aside from making a career out of it.