Check out the paradigm-changing TEDMED talk by Genetic Alliance president and CEO Sharon Terry.
Her family's experience with a lack of data sharing among medical research institutions, in the interest of competition for funding and publications, illustrates a major impediment to the development of treatments and interventions. In Sharon's talk, she shares how her children's diagnoses inspired her—a person with no medical background—to embrace citizen science as a means to transform biomedical research and healthcare. Additionally, she discusses the use of crowd-sourcing to spur progress. Her talk can be viewed here.