Tuesday, November 18, 2014
8:00 AM - 8:55 AM
GH - Empire Ballroom V
Darlene Cavalier, Founder, SciStarter
Andrea Downing, BRCActivist, Founder, Brave Bosom
Ethan Perlstein, Founder, Perlstein Lab PBC
Brock Reeve, Executive Director, Harvard Stem Cell Institute; President, Poliwogg Regenerative Medicine Fund
Jessica Richman, CEO, uBiome
At the Partnering for Cures panel "Democratizing science," a diverse group of established and new leaders discussed the ways they are pushing scientific inquiry to open it up to citizen scientists, to crowdsourced solutions to scientific problems, to young entrepreneurs from outside the field, and to individual investors. Moderator Jessica Richman of uBiome explained that "democratizing science is about bringing new participants into the scientific process through funding, data sharing, hypothesis generation, conclusions, new analysis of data, ... publishing, and commercialization."
For example, Darlene Cavalier founded SciStarter – which allows users to find, join, and contribute to science through recreational activities and citizen science research projects – with a database of more than 850 active, searchable projects. Cavalier explained that SciStarter creates ways for non-scientists to become active in research by "bringing projects to where people are, including sporting events." Providing the opportunities to bring people in allows them to share in the ownership of the research.
Brock Reeve of the Harvard Stem Cell Institute and Poliwogg Regenerative Medicine Fund discussed new models that galvanize investors in areas they care about through crowdfunding: "There is now the opportunity to activate individual non-accredited investors to new areas, to act like venture capitalists." Reeve explained that the Harvard Stem Cell Institute is like a virtual research company within Harvard that is entirely dependent on crowdfunding.
As a patient advocate, Andrea Downing of Brave Bosom discussed the need for changes in patent policies to allow for more innovation in cancer screening. Her goal is to "create better options to screen for, prevent, and treat breast cancer. I believe that proprietary gene tests are not the way to go, and I want to move towards a more open roadmap for research." Downing wants to see patients as partners in the research system and believes that while building awareness contributes to advancing disease research, it is not enough. She called for more partnerships to bridge the gap between science and patient engagement that can activate the tsunami of genetic information.
Ethan Perlstein of Perlstein Labs discussed the alternative paths for research science outside of academia. He founded his own company after becoming frustrated with the "post-docalypse," or, as he put it, the "Hunger Games-like odds fighting for academic jobs and resources." In his pursuit to "go indy" and start his own research enterprise, he needed to learn to brand himself and create a social media strategy to reach new communities. He connected with the rare disease community because his research and desire for alternative funding was a great fit with advocates.
Reeve discussed how crowdsourcing an idea is also possible, citing the recent challenge to come up with an algorithm to track fast- versus slow-progression ALS. The winning study reduced costs by 20 percent and was 100 percent accurate. The entrants to the contest came from across sectors and across the country, demonstrating the ability of crowdsourcing to break down barriers of geography and variance in expertise. Further, it demonstrates how to translate a problem in a way another community can relate to, transforming a medical problem into a math problem.
Through their work, the panelists are sometimes surprised by the crowd, including being discouraged from trying new things unless they already have a huge audience to pull from. But Perlstein found that many people can become activated when given the chance. The panelists agreed that if you can motivate the underlying community, it can have an enormous impact.
Downing further explained that the complexities of science do not limit the impact non-scientists can have. She said that while "everyone isn't as excited about data as me, that doesn't mean you can't connect with the audience. Helping women understand what their mutations mean, breaking down to the community its impact, that gets people excited." Downing said that teaching people about their gene sequence, letting them know "they can speak DNA," inspires curiosity.
Cavalier has learned the power of face-to-face communications. She realized that some groups may feel comfortable with engaging online, but it's also critical to reach out in person to inspire trust from new groups and create new science cheerleaders.
The panel concluded with recommendations for the audience on how they can accelerate the use and impact of citizen science, including engaging using social media to attract new audiences and collaborations, taking an active role in leading research from the crowd, and pursuing research with the belief that ideas are not exclusive to one organization.