If your credit card is stolen, that’s rough. If your social security number is stolen, that’s beyond rough. But if your genetic material is stolen? Well, there’s no replacing it.
“You’re born with this code, you die with this code, so once it gets out there, it’s out there,” said Kate Black, privacy officer and corporate counsel for the genetics company 23andMe. “And you have to be sure you make smart decisions about that.”
Kate Black, privacy officer and corporate counsel for 23andMe.
Black’s the company’s first-ever privacy officer. 23andMe works by selling kits to consumers, having them spit into tubes, and then analyzing that spit for information about ancestral and genetic traits. The company brings in revenue both from selling the kits, but also from selling their customers’ anonymized data to companies doing research (when customers consent).
Black has been in the job about a year, and was previously employed by the U.S. Department of Health and Human Services. We asked her what frightened her most about the job: “I’m scared of what I don’t know. I think it’s hard to define the scope of risks or worries that people have, especially about their genetic data,” she said.
That data could have potential to change how we practice medicine. “We really believe that the next generation of drugs will be developed in a personalized, unique way,” Black said. “They can be specifically tailored to treat specific conditions. It’s a 180 from the way drugs are currently developed, where you assume everyone is going to react to a disease in the exact same way.”
23andMe isn’t the only company working in this area — competitors include sites like Ancestry.com. As more data is collected, Black said those drugs are on the way. “The era of genetics is upon us. We’re full throttle into figuring out exactly what that means, and I think the first real results will probably be seen in the next five to 10 years.”
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