Jason Bobe attempts to produce biomedical research efforts that people actually want to join. He works on prototyping collaborative and participatory models of 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.
The focus of my research is prototyping collaborative and participatory models of biomedical research and innovation. I am particularly interested in (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 & innovation through "equal access" and equitable data sharing practices, i.e. those which enable individuals to build highly integrated, longitudinal research profiles with portable, re-usable data and information assets, (d) the creation of well-consented public data resources via the “open consent” framework, (e) building research networks and communities of practice around emerging technologies. Since 2007, I have been working closely with George Church at Harvard to develop the Global Network of Personal Genome Projects (PGP), which includes research studies in 4+ countries 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, followed by sites at Hospital for Sick Kids / University Toronto (2012), University College London (2013), and the Center for Molecular Medicine CeMM in Vienna, Austria (2014). I have co-founded a variety of initiatives, organizations and programs, including: PersonalGenomes.org OpenHumans.org DIYbio.org GETconference.org
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