By Allison Proffitt
May 23, 2013 | STANFORD, CA—The challenge in healthcare is to change what is—and what isn’t—a billable question, said 23andMe founder Ann Wojcicki, giving the opening keynote yesterday at the Big Data in Biomedicine conference at Stanford University.
Formerly, Wojcicki spent time on Wall Street making investments in healthcare and the formula was simple: disease makes money. But that presented a “real disconnect” with “my moral compass”, Wojcicki said. She says 23andMe was built with the “rebellious attitude” of serving first the individual.
The response to personal genomics toggles between, “There’s nothing meaningful yet!” and “Oh it’s all so meaningful, how could you give this information out without an incredible amount of supervision!” Wojicicki said. And it fact, both are right. “Genetics won’t be everything, but it is a useful tool,” she said.
23andMe was built to capitalize on two human trends: the inclination to share quite a lot about ourselves via Facebook and YouTube and the desire to help others, to be active in causes like the Livestrong movement and the Susan G. Komen events.
It was a good bet. 23andMe offers its customers genotyping, not sequencing. “Sequencing is incredibly important,” Wojcicki acknowledged, “but not for the customer. Genotyping is phenomenally accurate, and it’s enough for the customer.”
When customers visit the site, they are also offered plenty of opportunities to participate in research via surveys. 81% of our customers answer more than 10 research questions, Wojcicki said. Users don’t visit the site daily, but when they do, most interact with the research opportunities available.
“We are collecting more than 1 million phenotypic data points each week,” she said. And that data store, Wojcicki said, is the future of healthcare. “You can just run a query.”
The result is real time research, and access to an engaged patient population. For example, a Parkinson’s researcher stumbled across a non symptomatic patient with both a LRRK2 genetic variant (associated with Parkinson’s disease) and a GBA variant (associated with Gaucher’s Disease). The researcher wanted to study what the combination might mean, and turned to 23andMe to find other individuals with both variants. The database indicated that 17 23andMe customers carried both variants. Within 36 hours, 8 had agreed to participate in the research and to having a punch biopsy.
“Where else could you find these incredibly rare people who are willing to do an invasive procedure for free, and say ‘Yes, I want to participate in research!’” Wojcicki said. “I think it taps into that Susan G. Komen-like enthusiasm. People want to help!”
What people don’t want, Wojcicki emphasized, is to be treated like a human subject. Wojicicki said that 23andMe is completely transparent in its research practices. Patients who participate in research are sent any resulting scientific paper.
“We say, ‘Hey, you actually did this! That’s great!’ and that’s the kind of cycle we want. Instead of having research kind of hidden from people, we want to really engage them.”
The company dropped the price of genotyping to $99 in hopes of getting one million customers by the end of the year. The one million mark is the point Wojcicki expects to be “really truly disruptive.”
“If I have a million people walking around town with their genetic data, it creates a little bit of chaos.”
Wojcicki’s goal is to, “create so much data that you cannot ignore this anymore.”