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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.
Douglas Yee, MD
Director, Masonic Cancer Center
John H. Kersey Chair in Cancer Research
Professor of Medicine and Pharmacology
University of Minnesota
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
- Marshall E. Patient Advocate Named Co-Inventor on Patent for the PXE Disease Gene. Science 2004;305(5688):1226.
- Terry SF. The Study is Open: Participants are Now Recruiting Investigators. Science Translational Medicine 2018;9(371):eaaf1001.
- Terry SF, Terry PF, Rauen KA et al. Advocacy Groups as Research Organizations: The PXE International Example. Nature Reviews Genetics 2007;8;157-164.
Continuing Education Information:
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Attorneys: The Minnesota State Board of Continuing Legal Education approved 1.5 Continuing Legal Education (CLE) credits; Event Code is 265320.
Continuing Medical Education:
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Credit Designation Statements
American Medical Association (AMA)
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