On Jan. 29, Sharon F. Terry, MA (Genetic Alliance) and Douglas Yee, MD (Masonic Cancer Center, University of Minnesota) engaged in a lively conversation about the promises and pitfalls of research that's driven by citizen scientists and patient advocates. The wide-ranging discussion touched on Terry's own path to conducting research because her children's rare disease diagnosis. She's gone on to establish infrastructure and provide guidance for others who want more ownership of the research process and operate outside of traditional scientific channels. Dr. Yee added his perspective as a cancer researcher and clinician. The event was moderated by Susan M. Wolf, JD, Consortium Chair. Video of the webcast is available here.
Thursday, January 31, 2019