“If people knew institutions were hoarding their data, they would be shocked,” says Sharon Terry, CEO of Genetic Alliance. That’s right—what many people don’t know is that some academic institutions retain patient data information and avoid sharing it with other institutions until they’re able to roll out a solution first. Many people would agree that this type of competition is not only inappropriate for the field but detrimental to the health of individuals and communities.
Things are done quite differently at Genetic Alliance, where every individual in the system is allowed to make decisions about where their data and samples will go. In most cases, they’ll go straight to patient registries and biobanks, which are comprehensive collections of tissue samples, information about disease progression and drug therapies, and information about the correlation between genotypic and phenotypic data as it relates to diseases. These resources are accessible to anyone—not just powerful institutions that may stand to gain from them.
Genetic Alliance has been around for 32 years now and continues to evolve with the needs of the communities and organizations they work for. They are currently helping about 2,000 other non-profit advocacy organizations gain the tools and information they need, as well as work more efficiently overall.