The explosion of fitness trackers, mobile devices, and cheap genome sequencing makes it easier than ever to run large-scale clinical studies, enrolling hundreds of thousands of volunteers to study health. But the rest of the system around clinical studies isn’t ready – indeed, in the traditional context, 2,000 people is a large study. We need new kinds of structures, from gaining informed consent to leveraging networks of individual data users to analyze the data, and those new structures need new policies, norms, and social systems. This talk guides an audience through the changing world of clinical research in a mobile world.
Big data can create a lot of value, but it has some very real implications about our privacy and anonymity. Most of the social conversation around privacy and data is dominated by Snowden and the surveillance industry, but there are many more issues to explore, especially around health and wellness. We need to explore what we mean by privacy, and tease apart the places where we might want to be observed – in a clinical trial, or a study of local environments – as well as how to use modern software design principles to ensure that those being observed understand and consent to the deal. This talk guides an audience through the key privacy issues in big data and reveals a path forward based on engagement, informed consent, and strong social ties.
Science has been dominated by elite research universities for decades, and its outputs – journal papers, inventions, and more – are some of the most protected knowledge products left in a networked world. But the advent of the internet and mobile devices has placed sensors into the hands of the population, and the emergence of cheap storage and processors means anyone can be a digital scientist. Social movements to liberate the scholarly literature, to make scientific data as reusable as Lego blocks, and to break open the scientific process itself are transforming the way we make and deploy scientific insights. This talk guides an audience through the key parts of the transformation of contemporary science.
John Wilbanks is the chief commons officer at Sage Bionetworks and a data commons expert and advocate. He has spent his career working to advance open content, open data and open innovation systems. Wilbanks also serves as a senior fellow at FasterCures, and as a senior advisor for big data to the National Coordination Office. Previously, Wilbanks worked as a legislative aide to Congressman Fortney “Pete” Stark, served as the first assistant director at the Berkman Center for Internet & Society, founded and led to acquisition the bioinformatics company Incellico, Inc., and was vice president of science at Creative Commons. In February 2013, in response to a We the People petition that was spearheaded by Wilbanks and signed by 65,000 people, the U.S. government announced a plan to open up taxpayer-funded research data and make it available for free. Wilbanks holds a B.A. in philosophy from Tulane University and also studied modern letters at the Sorbonne.