(photo credit: Gilles Frydman)
Jason Bobe is Associate Professor and director of the Sharing Lab at the Icahn Institute for Genomics and Multiscale Biology at the Mount Sinai School of Medicine.
He attempts to produce research efforts that people actually want to join. He works on prototyping collaborative and participatory models of biomedical research and citizen science. With a focus on (a) greatly expanding the rates of participation in organized health research, (b) broadening the types of contributions participants in research are able to make, (c) promoting discovery & engagement through participant-centered research design and “equal access” data sharing practices, (d) the creation of well-consented public resources via the “open consent” framework, (e) building research networks and communities of practice around emerging technologies.
At Mount Sinai, he is a leader of the Resilience Project, an effort to learn how some people are able avoid disease despite having certain genetic risk factors.
Since 2007, he has been working to develop a global network of Personal Genome Project (PGP) research studies that collaborate on the development and evaluation personal genomic technologies and practices at increasing scales. The first site was founded at Harvard Medical School in 2005 by George Church, followed by sites at Hospital for Sick Kids / University Toronto (2012), University College London (2013), and the Center for Molecular Medicine in Vienna (2014) – with many more sites under development.
He is co-founder and director of two 501(c)(3) nonprofits, PersonalGenomes.org (with George Church) and DIYbio.org (with Mac Cowell).
He also produces the annual Genomes Environments Traits (GET) Conference, which brings together leading thinkers to discuss how we measure and understand people and their traits. And the uniquely interactive series called GET Labs, where highly-characterized, informed participants can find a global network of collaboration-minded researchers who wish to study them.
Most recently, he is co-founder (with Madeleine Ball) and project director of Open Humans, a project backed by Knight and Robert Wood Johnson Foundation that invites individuals to build highly integrated, longitudinal research profiles that can be easily donated to advance medical breakthroughs.
Previously, he was director of business development for DNA Direct (acquired by Medco, now Express Scripts).
In his spare time, he operates a volunteer-led biohacker hotline for biosafety education.hi-res photo