23andMe sells genetic testing kits and has recently started sharing that data with pharmaceutical companies. (23andMe)

It hasn’t taken long for 23andMe, the Mountain View-based genetics company, to strike another deal with big pharma.

Last week, the Google-backed firm announced a $60 million agreement to allow Genentech to use participant data to study Parkinson’s disease. A new agreement announced Monday will give Pfizer access to 5,000 people in the company’s database to study the genetics of lupus.

It could be a new way to come up with treatments, says Emily Drabant Conley, Director of Business Development.

“We’re quite hopeful that the information is being leveraged to move us toward therapies and cures,” Drabant Conley says.

The biotech firm sells $99 personal DNA kits that, through one dab of saliva, can tell consumers about their genetic make-up and ancestry. It has enrolled more than 800,000 participants and 650,000 of those have consented to share their medical information.

“Not only are they benefiting by learning about themselves,” says Drabant Conley, “but when they consent to participate in research it gives us the ability to go back to them repeatedly over time and collect more info and engage them in the research that our partners are doing.”

Critics say the company is making millions by selling its users’ data. Concerns include privacy breaches and whether insurance companies would increase rates if they had access to a member’s genetic history.

23andMe came under attack in 2013 when the Food and Drug Administration issued a warning letter saying the company was marketing genetic health analyses without approval, and raising concerns about the accuracy of the tests and the health risks to consumers of inaccurate tests.

A 23andMe television commercial at the time said people could discover if they “might have an increased risk of heart disease, arthritis, gallstones, [or] hemochromatosis.” 23andMe also gave people an analysis of genetic markers it said were associated with 254 specific diseases and conditions.

Concerned about “the public health consequences of inaccurate results,” the FDA asked company founder Anne Wojcicki to stop marketing the health analyses until the “diagnostic and prognostic capability of genomic information has been clinically validated.”

23andMe has stopped marketing the health analyses in the U.S., but is working with the FDA to develop protocols that will allow the company to resume that part of its business.

23andMe is expected to announce another ten partnerships with pharmaceutical companies over the next several weeks.

23andMe Strikes Another Deal With Big Pharma 14 January,2015Lindsey Hoshaw

  • Stephen Cobb

    I love 23andMe. And it is a lifesaver as far as I am concerned, coming from the Hemochromatosis community, where the HFE test results are very well understood and documented. Tragically, getting a test through a doctor is, for too many people, complicated and expensive.

    I hear accounts all the time of relatives who should be tested for hemochromatosis getting fobbed off by doctors whose ignorance of the condition is staggering. Some of them will develop crippling and potentially fatal conditions as a result of such attitudes. The idea that getting genetic results via one’s doctor is better than direct-to-consumer makes no sense when you find out how little doctors know about hemochromatosis, the most common genetic killer in America.

    At the end of the day, it’s all about paternalism and money. Doctors and clinics don’t like patients learning about their bodies themselves, and they don’t get a cut of the fees for the genetic tests that 23andMe performs. So they lobbied the FDA to shut this service down (the medical lobby in New York state fashion had already banned the 23andMe saliva test years ago).


Lindsey Hoshaw

Lindsey Hoshaw is an interactive producer for KQED Science. Before joining KQED, Lindsey was a science correspondent for The New York Times, The Boston Globe, Forbes and Scientific American. On Twitter @lindseyhoshaw

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