We can’t tell you the breakout bands or best films from this year’s South By Southwest, but we can tell you that new ideas around digital health — including 23andMe’s use of big data to power research — drove a lot of the most interesting discussions on the interactive side of the festival.
23andMe’s CEO and co-founder Anne Wojcicki delivered one of the more popular keynotes. While she tried to answer most of the questions directed to her through Twitter using the #AskAnne hashtag, she ran out of time quickly. So we went back through the more than 100 queries to answer the most frequently asked questions.
The biggest question, the one that’s been dominating our work over the last few months, asked by many on Twitter was summed up by Armin Molvai (@amolavi), who asked: “Can you share and update on what’s happening with the FDA?”
Back in November the FDA ordered 23andMe to stop returning health results to new customers, pending completion of a regulatory process, that requires submitting applications that detail the validity of the testing and science behind health results returned to customers. How long that process will take is hard to say, but Anne made clear that 23andMe is still deeply invested in seeing it through.
“My main priority is resolution with the FDA,” she told Venture Beat writer Christina Farr after her keynote. “We’re not going to switch gears and become an ancestry company, although that’s a huge market on its own. We need to return to delivering health information.”
Knowing how the FDA process has changed what 23andMe can offer new customers, Melissa Green (@mgreenvml) asked on Twitter how that will impact the company’s ongoing research.
Anne’s message on that was that not only is the company continuing to do research, but 23andMe is also tackling new areas of study.
“We have 650,000 people in our database and are being inundated with requests from academics and foreign partners,” she said. “We have more of this data than anyone else in the world.”
The mission of the company has always been about changing health care and empowering people with their genetic information. And 23andMe’s research is central to that mission, Anne said.
With 23andMe people can learn about themselves while helping to power important genetic research. Most of our customers consent to research. Collectively those customers have answered more than 170 million survey questions that in turn helps fuel research that now extends to more than 230 different studies looking at 1,000 different conditions that span everything from Parkinson’s disease to motion sickness. That’s the kind of research that could not be accomplished using traditional methods
While many at the conference could easily grasp the power 23andMe’s big data to speed research, some others were concerned about privacy around that data and, “how (23andMe is) protecting this database?”
Anne’s response was that research is done using data that is made anonymous, that the company adheres to strict security protocols. And our research is overseen by an independent “Institutional Review Board” that objectively looks out for the interests of those who consent to research. In the end, Anne pointed out that customers can opt out of research at any time, download their data and close their account.
“One of the reasons we went direct to consumer is so that you own the data,” she said. “And if you then want to share it that’s your right.”