Last week, attendees of Sage Bionetworks’ 3rd Annual Congress came to San Francisco with the bold charge to speed up drug discovery and ready to stand on the shoulders of the previous two Congresses to take the nascent open source biology movement from a thinking to a doing stage. Pitched as “Building Better Models of Disease Together,” a packed house of more than 250 forward thinking attendees and a global online community of 500 watched the live webcast (available here).
Those who gathered were fully aware of the failures with the current siloed approach to biomedical research and were expecting to hear about Sage Bionetworks’ progress to build new infrastructure so that researchers, funders and the public can for the first time develop, fund and complete research that puts the patient at the center of the equation.
A special buzz filled the air as the 80 percent of returnees were complemented by an irreverent, energized group of 16 Young Investigators selected for their effort and commitment to open research. I opened the Congress, prompting all to call each other out on the culture of open collaboration they had come to create: “If you are lucky at some point in your life, you realize that the task needed is bigger than you. Realize that you should not be building something for you to use but for others to use. When you use the word “We,” mean it.”
Opening keynote speakers George Church and David Haussler, both heroes from the front lines of genomic technology and Big Data analysis, continued to impress all with the rapid advances of affordable molecular technology and its ability now to generate more bytes of data—rapidly approaching the zettabyte scale—than words that human beings have collectively ever spoken. To make the most of Big Data, both exhorted all to stop participating in the current siloed culture and instead invest in approaches that turn the machines loose on ALL the data that ALL can then see.
As Congress returnees have come to expect, Sage Bionetworks’ scientists, software engineers and collaborators led solid sessions, this time providing open science tools for all to now take up. These included datasharing platforms (Synapse), a portable legal consent (pending IRB approval) to create openly available, user-contributed health and genomic data, exciting examples of pre-competitive drug discovery models and the launch of BRIDGE, an online “town square” to democratize the identification of the effective therapies that matter most to patients.
But no one expected the jawdropping talks of three keynote speakers that stretched things even beyond the comfort zone of the most disruptive thinkers at the Congress. Although attendees arrived at the Congress heady about the progress already made, these keynote speakers pointed to the huge effort and out of the box thinking still needed to truly democratize medicine.
Keynote speaker Lawrence Lessig, a Harvard Law School professor, compared our current closed “medical industrial complex” to the hopeless picture of today’s U.S. government and the toxic effect that money and privilege have had on its core democratic principles. Most biting was Lessig’s reminder that “We are the They” that are distracted and do nothing to change the status quo. Similar to the parent of a child with terminal cancer, Lessig exhorted all of us
