Gene sequencing has gotten incredibly fast and cheap, and researchers around the world are pouring huge volumes of genomic data onto their private servers, in the hope they will sift through it all to make groundbreaking discoveries. Should so much genomic data be so closely guarded, or should it be poured into a free and open database that all scientists share?
The idea sounds utopian in a high-risk, high-reward industry that protects intellectual property like Fort Knox. But no one disagrees that today’s approach to drug development takes too long, costs too much, and is too unpredictable.
Stephen Friend thinks shared data would change all of that—and allow researchers to see patterns they wouldn’t otherwise see, and make insights that would never emerge any other way. So he did something two years ago that most people would consider quixotic: He quit his high-powered job as a senior vice president of cancer research at Merck to go on a mission to disrupt biology.
The founding idea, at a nonprofit called Sage Bionetworks, was to spark an online movement like the one we’ve seen with open-source software or Wikipedia, in which thousands of loosely affiliated people around the world pool their brainpower to do something great. In this case, the wisdom of the crowd could improve drug development and personalize medicine.
The Sage Commons is built on the notion that the genomic symphony is too bewildering for any individual or team—even at a place with as many dollars and brainiacs as Merck—to figure out. That seems pretty obvious.
But two years into this endeavor, Friend has learned how many people still resist any change to business as usual. Academic institutions still cling to their intellectual property out of a hope it will someday make them money. Scientists, by and large, keep their experimental data close to the vest in the hope they can get career-making papers published in Science or Nature. Many drugmakers can’t really imagine sharing anything valuable outside their corporate firewalls, lest it undermine their competitive standing. So while Facebook and Twitter may have proven that humans have a deep-seated desire for sharing, this impulse is still widely suppressed in biomedicine.
When I visited Friend at his office in Seattle on Friday morning, he was brimming with his usual enthusiasm, but was also sober about how hard it is to get people to change their ways, and to get them to share for the greater good. When I asked him what the biggest obstacles are to this mission, he didn’t hesitate: “Apathy, and ignorance.”
But if anybody can spark a new way of thinking, Friend is the guy. Once described by Forbes as “one of the last great dreamers” in the pharmaceutical business, Friend has a rare blend of scientific chops, entrepreneurial success, Fortune 500 leadership experience, high-level connections in biology and IT, and the infectious energy and charisma that makes smart people want to climb mountains for him.
Which is why Sage has scooped up more than $20 million in support so far. It has built a team of 30 employees. Companies like Merck (NYSE: MRK), Pfizer (NYSE: PFE), AstraZeneca (NYSE: AZN), and Quintiles have contributed some combination of money and data to the cause. Amazon Web Services, the cloud-computing unit of the e-commerce giant, is hosting the massive amounts of genomic data that Sage wants to put in its public repository.
Some world-class scientists at Stanford University, Columbia University, UC San Francisco, and UC San Diego have agreed to pool their experimental genomic data. The FDA has become curious about how an open data repository could be used to track adverse events with drugs. Scientists from other disciplines, like physics and astronomy, have been vocal advocates for the benefits of openness, Friend says. And patient advocacy groups, including the Genetic Alliance and the CHDI Foundation, have championed the cause.
One of Friend’s next steps, once there’s enough data in the Sage Commons, is creating a free online scientific journal with the ability to visually display network models of disease that connect the dots between genes, proteins, and clinical manifestations of disease in ways that today’s journals aren’t equipped to handle.
At this point, Friend said, there are “kernels” of useful data in the Sage Commons. “Have we got it all built? No,” he says.
That’s where you come in. The only way a movement like this can work, Friend says, is if a wide array of “communities of interest”—drugmakers, academic scientists, doctors, regulators, insurers, patients—grab this platform and run with it on their own.
“We’ll make it or not depending on whether our community of interest goes viral,” Friend says. “You look at Twitter, and it has 42 employees [in its early days—it’s now 200. –Eds.]. It’s not about what they are doing. It’s about creating a community of interest who will build this.”
If this thing goes viral throughout biomedicine, it will change the way we think about healthcare. If it doesn’t go viral, it will probably fade into irrelevance.
One key step forward for Sage is coming up this Friday and Saturday at its second annual Sage Commons Congress. It will bring together more than 200 people from various fields to work together on this project at UC San Francisco’s Mission Bay campus. I’ll be there listening, interviewing, reporting, writing, and Tweeting under the conference hashtag, #sagecon. For those who want to participate but can’t be there in person, Sage is providing a webcast. I’ll be watching closely to see how the 200 people inside that room work together. But I’m even more curious to see if biologists outside that room will heed Friend’s call.
Anyone who cares about the future of medicine ought to.
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