Genetic Alliance empowers individuals, families and communities to transform health. It is a 27-year-old nonprofit network comprised of more than 10,000 health organizations, more than 1,000 of which are disease advocacy organizations serving a range of conditions from common to rare. Genetic Alliance also serves individuals affected by conditions for which there is no disease advocacy organization. Genetic Alliance’s culture is to work from the public’s perspective to discover or describe problems and inefficiencies in health systems (from research to services). Genetic Alliance’s efforts focus on improving participant-centric processes, creating and retooling research and services systems to make them easier and more intuitive to use, and aligning incentives.
Genetic Alliance’s enterprise, BioTrust, focuses on how to build a system for translational science that is participant-driven. This includes developing campaigns like Free the Data. Private Access, a developer of consent management and access control technology, is the technology partner for this platform. The campaign and the platform are overseen by the Genetic Alliance BioTrust Ethics Team. The use of the data is governed by the sharing, privacy and data access preference that each individual establishes. Researchers access the data through RecruitSource and are required to have institutional review board approval.