Consumers in the Lead: Transforming Research and Health

Because of the extreme cold, this lecture will be A WEBCAST ONLY EVENT. There will not be an event at Coffman Union. Please join us at z.umn.edu/TerryWebcast.

In an age when consumers and their preferences have a strong impact on just about every area of their lives, health care may be the last bastion of traditional hierarchy. For more than two decades, Sharon Terry has pioneered a new model to accelerate medical research on a disease that affects her two children. Terry, a non-scientist, created DIY solutions in biomedical research and translational science, and then scaled them so that other consumers, advocates, activists, and citizen scientists could also use these tools to craft novel research projects in hopes of alleviating the suffering of many. Terry will discuss the scientific, clinical, ethical, and policy issues related to consumer-driven science.  

Sharon F. Terry, MA, 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. With her husband, she co-discovered the ABCC6 gene, patented it to ensure ethical stewardship in 2000, and assigned their rights to the foundation. She subsequently developed a diagnostic test and conducts clinical trials. 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 her interview on the TED Radio Hour.