Finding cures for disease has long been a goal of doctors and scientists. In his TED Talk, Dr. Stephen Friend, co-founder of Sage Bionetworks, revealed how he’s hoping to do exactly that, but in an entirely different way. It’s a simple story of changing one’s perspective, and the principles he described can inspire many problem-solvers to take different approaches than the norm. Friend calls this open-source initiative, “The Resilience Project: A Search for Unexpected Heroes”.
Friend noted how there’s been a seismic shift in our understanding of inherited diseases and the genetics behind them in recent times. Yet even with all this new information available, we still haven’t developed prevention measures in equal step. We have a far better power to diagnose than we do to fully treat, and certainly to prevent. How can that crucial gap be bridged? In the past, scientists and doctors have focused their efforts on studying those who are sick, in hoping to better understand what in their genetics has led to their illness. But what if we spent our time studying those who don’t get sick?
The idea behind more closely studying people who are healthy (as well as those who are carriers of genetic childhood diseases) is the hopes of finding something hidden inside that is helping prevent the contraction of illness. Friend has acknowledged that this is a massive undertaking; aside from needing a wide range of subjects to study, there needs to be a lot of power behind the initiative. Inspired by open-source software models, Friend began a coalition with many hospitals and other organizations to help and offer samples. Together, the group has gotten over 500,000 samples and found dozens of strong candidates to be “unexpected heroes.”
There is still much more research to be done, and the future subjects of this research could be staring us in the mirror. By having individuals step up and be willing participants, the initiative hopes to extend this research, and hopefully cure past childhood diseases. But like other open-sourced endeavors, society’s willing participation and the desire to share is the key.