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Protecting Genetic Data—Understanding and Managing Privacy, Policy, and Ethical Concerns in the Digital Age

Thursday, February 28, 2019 @ 7:00 PM-8:30 PM


The Ethical Society of St. Louis
9001 Clayton Road, St. Louis, MO 63117 United States  + Google Map

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 the Experts:

The Cordell Institute at Washington University – At the Nexus of Genetic Testing, Genomic Editing and Ethics

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

Cordell Institute Director, Dr. Jonathan Heusel, representing the School of Medicine, introduces the audience to the recently dedicated Joseph and Yvonne Cordell Institute for Policy in Medicine & Law, and brings to light a couple of high-profile areas where the Cordell Institute has interests—large-scale genetic testing and gene editing. He focuses his discussion on data sharing and privacy considerations and the ethics of altering the human gene pool.

Sharing Genetic Information in Families with Hereditary Risk for Cancer

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

Approximately 5% of families have a genetic mutation that puts them at greatly increased risk for developing cancer. Knowledge of a genetic mutation is important for multiple family members. Saint Louis University’s Dr. Suzanne Mahon talks about why families should understand which members might be at risk for having such a mutation and the implications of choosing to share or not share this information.

GINA:  Federal Genetic Privacy and Discrimination Protections

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

Law professor, Elizabeth Pendo, J.D., gives an overview of the Genetic Information Nondiscrimination Act (GINA). This federal law prohibits an employer or health insurer from acquiring or using an individual’s genetic information, with some exceptions.

Genomic Privacy and Ethics

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

Professor Richards, Washington University’s Cordell Institute Director representing the Law School, suggests a way to think about privacy in the genomic context, and offers some thoughts about the ethics of human gene editing.

Ethics in Science Series Logo


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.

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Genetics and Genomics Series Logo

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.
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Thursday, February 28, 2019
7:00 PM-8:30 PM
Event Categories:


The Ethical Society of St. Louis
9001 Clayton Road
St. Louis, MO 63117 United States
+ Google Map