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23andMe CEO defends practice of sharing genetic info with pharma companies

Lydia Ramsey
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(Kimberly White/Getty) Anne Wojcicki

When it comes to health care, data is crucial. It's already being used by companies like 23andMe, a genetic testing startup based in Mountain View, California.

The company is known for its $99 genetic test kits that map out customers' genomes and provide them with information about their ancestry.

In November 2013, the FDA barred 23andMe from sending its health reports to customers, because it was concerned that the company was misrepresenting genetic tests as medical advice, and worried customers would use that information to make medically unsound choices. The company is still collecting that information, but customers don't have access to the analyses anymore. 

But 23andMe partners with pharmaceutical companies and shares that data with them, as long as the customer says it's OK. 

So far, about 80% do, according to the company's own reports.

23andMe CEO Anne Wojcicki spoke with Kai Ryssdal of Marketplace on Monday about the practice.

"We do do a lot of partnerships with a lot of pharma companies because we do feel like that's in the best interest of the consumer in order to make meaningful discoveries from the data,” Wojcicki told Ryssdal.

“But if a consumer doesn't like what we do, they always have the ability to close their account, delete their data, and not be involved in any more research."

All in all, 23andMe reached 14 collaboration deals in 2014, some with pharma giants such as Genentech and Pfizer that focus on creating databases for specific diseases.

In forms they filed last week, 23andMe disclosed they had raised $79 million toward a $150 million funding push, though the specific investors were not listed. This is the first time the company has publicly disclosed since February 2012, when the company released information that it had received $58 million in funding.

23andMe also hit its 1 millionth customer in June, more than double the amount of users the company had in November 2013, when the FDA put a hold on releasing health reports to customers. So far, one genetic test — for a rare condition called Bloom Syndrome — got FDA approval, though 23andMe says it won’t provide the health reports again until it gets approval for a more comprehensive set of tests.

So far, 23andMe has racked up $125 million in funding in its six-year history from backers such as Google, meaning this round will more than double its funds.

And 23andMe needs it. In March, the company announced its plans to go into drug development, cutting out the middleman and launching a new trend for data companies.

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