PLC is part of a governance project at Sage Bionetworks that includes the terms of use, privacy policies, and data use agreements for Synapse, as well as informed consent and legal terms for Bridge. PLC includes both a research study called SCC-CGR and the development of new forms of online informed consent.

The SCC-CGR study ran from the summer of 2012 to the winter of 2014. Our informed consent document and software from SCC-CGR are available for reuse, and results and aggregate data will be published in the spring of 2014. The tutorial interface to the consent process is available as a PDF as well as in the software repository.

Multiple other projects are underway through the Bridge project, also being run by Sage Bionetworks. We are working with various community stakeholders such as the Electronic Data Methods Forum and the Global Alliance on consent, governance, regulatory, and ethical systems and processes.

Pro bono legal support on the first standard consent form (in use in the SGG-CGR sturdy) was provided by Dan Vorhaus and Wilson Sonsini Goodrich & Rosati. Open source technical services were provided by Fabricatorz and 5AM Solutions. Inspiration for the work came from the Personal Genome Project, the pioneers of the “open consent” approach on which we build.

For opportunities to enroll in new studies that use PLC tools, sign up for our mailing list.

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