Consumers in the Lead: Transforming Research and Health

Sharon F. Terry, MA

Genetic Alliance

Tuesday, January 29, 2019 - 11:30am to 1:00pm

Mississippi Room, Coffman Union

Video of this event can be viewed here

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 and Yee discussed the scientific, clinical, ethical, and policy issues related to consumer-driven science. 

Commentator:
Douglas Yee, MD
Director, Masonic Cancer Center
John H. Kersey Chair in Cancer Research
Professor of Medicine and Pharmacology
University of Minnesota

Moderator: 
Susan M. Wolf, JD
Chair, Consortium on Law and Values in Health, Environment & the Life Sciences
McKnight Presidential Professor of Law, Medicine & Public Policy
Faegre Baker Daniels Professor of Law
Professor of Medicine
University of Minnesota  

Resources: 

Continuing Education Information: 

To earn Continuing Education credits, webcast viewers must email us at consortm@umn.edu during the webcast to confirm their wish to receive CE credits. Later viewing of this video will not qualify for credit. 

Attorneys: The Minnesota State Board of Continuing Legal Education approved 1.5 Continuing Legal Education (CLE) credits; Event Code is 265320.

Continuing Medical Education: 
Accreditation Statement
In support of improving patient care, University of Minnesota, Interprofessional Continuing Education is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC) to provide continuing education for the healthcare team.

Credit Designation Statements
American Medical Association (AMA)
The University of Minnesota, Interprofessional Continuing Education designates this live activity for a maximum of 1.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity.

Other Healthcare Professionals
Other healthcare professionals who participate in this CE activity may submit their statement of participation to their appropriate accrediting organizations or state boards for consideration of credit. The participant is responsible for determining whether this activity meets the requirements for acceptable continuing education.

PDF icon Accreditation and Disclosure Summary 

Sharon Terry

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.