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Protecting Genetic Data

February 28, 2019 @ 7:00 pm - 8:30 pm


FREE and OPEN to ALL. Junior Academy members, middle and high school students welcome and encouraged to attend. Registration not required.

Are there privacy risks inherent in sharing your genetic data? In our fast-paced, digital and technological era how do we manage the data-driven wealth of healthcare-related human information without compromising privacy? The promising personalized and targeted approach of today’s precision medicine that determines which treatments and therapies will be effective to prevent, diagnose, and treat disease for which patients is based on the collection, sharing, and storage of genetic, environmental, and lifestyle factors; and it poses new and unique privacy risks and concerns. Tap the experts in this informative and fascinating panel discussion on genetic data privacy to learn more about the issues that surround the sharing of our genetic information in a digital age.

A Panel Discussion with Featured Panelists:

Jonathan Heusel, M.D., Ph.D., Professor of Pathology and of Genetics; Director, Clinical and Translational Genomics, Department of Pathology & Immunology, Washington University School of Medicine; Co-Director, The Cordell Institute for Policy in Medicine and Law, Washington University in St. Louis–expert in molecular medicine and the development of clinical diagnostics

Suzanne Mahon, DNSc, RN, AOCN, AGN-BC, Professor, Department of Internal Medicine, Division of Hematology, Oncology & Cellular Therapy, Saint Louis University and SLUCare Cancer Center, SSM Health Saint Louis University Hospital–advance practice nurse certified in genetics and an expert in interpretation, management, and test results

Elizabeth Pendo, JD, Joseph J. Simeone Professor of Law, Center for Health Law Studies and the William C. Wefel Center for Employment Law, Saint Louis University School of Law–nationally recognized expert in disability law and health care law with expertise in genetic testing in the workplace, and its intersections with classifications based on gender, race, class, and disability

Neil Richards, JD, Thomas and Karole Green Professor of Law; Director, The Cordell Institute for Policy in Medicine and Law, Washington University in St. Louis–internationally known expert in privacy law, information law, civil liberties and freedom of expression

Protecting Genetic Data is an Ethics in Science Series partnership presentation of The Ethical Society of St. Louis and The Academy of Science St. Louis.

Presented in collaboration with Evenings on Genetics and Genomics Series of The Academy of Science – St. Louis, Washington University in St. Louis Institute of Clinical and Translational Sciences, the Intellectual and Developmental Disabilities Research Center, Siteman Cancer Center, and the Children’s Discovery Institute of St. Louis Children’s Hospital and Washington University School of Medicine.


February 28, 2019
7:00 pm - 8:30 pm
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9001 Clayton Road

St. Louis, 63117-1003