Sharon F. Terry is President and CEO of Genetic Alliance, an enterprise engaging individuals, families and communities to transform health. Genetic Alliance works to provide programs, products, and tools for ordinary people to take charge of their health and to further biomedical research. As ‘just a Mom’ with a master’s degree in theology, she cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. She is the author of 150 peer-reviewed papers, of which 30 are clinical PXE studies. Her story is the topic of her TED Talk and TED Radio Hour. She has created people-centered technologies, tools, and resources, and holds patents. She was instrumental in getting the Genetic Information Nondiscrimination Act passed. She has many awards, including from the White House and the National Academies of Science, Engineering and Medicine.
Not Just Data: People as Drivers
Biomedical research has consistently ignored the people and been centered on their data. It is critical that people be not only at the center, but also driving the processes with other stakeholders. This radical shift is overdue. I will describe the solution Genetic Alliance, in partnership with Luna, has created.