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ELSI and the Virome: Bugs, Drugs, and Precision Viral Care

April 22, 2024

Assistant Professor of Biomedical Ethics Research, Mayo Clinic   Advancing understanding of the human virome (all viruses that live in and on us) is a national scientific priority. Commensal relationships with viruses prompt questions of what it means to be human and healthy, shifting with new understandings of our complex cohabitation with the most abundant … Read more

Genomics, Precision Medicine, and Population Health Benefit

January 25, 2017

Malia Fullerton, DPhil, is Associate Professor of Bioethics and Humanities at the University of Washington School of Medicine. She is also Adjunct Associate Professor in the UW Departments of Epidemiology and Genome Sciences, as well as an affiliate investigator with the Public Health Sciences division of the Fred Hutchinson Cancer Research Center. She received a … Read more

Creating a Trustworthy Research Enterprise

January 25, 2017

Sandra Soo-Jin Lee, PhD, is a Senior Research Scholar and medical anthropologist who focuses on the social and ethical dimensions of emerging technologies and their integration into clinical practice. Dr. Lee leads studies of public understandings of research using clinical data and samples, concepts of race, culture and human genetic variation, and citizen science, commercialization … Read more

CRISPR, Gene drives, Governance and Ethics

January 12, 2017

Jennifer Kuzma is a Chancellor’s Faculty Excellence Program cluster hire in Genetic Engineering and Society. Kuzma is the Goodnight-North Carolina GlaxoSmithKline Foundation Distinguished Professor in Social Sciences in the School of Public and International Affairs (SPIA) and co-director of the Genetic Engineering and Society (GES) Center at NC State.

The Athena Case and the Rapidly Evolving Regulation of Genomic Testing

January 12, 2017

A recent lawsuit in South Carolina charges Athena Diagnostics with negligence in interpreting a genetic variant. The plaintiff is the mother of child who died after his doctors based their treatment on Athena’s classification of the variant as a variant of unknown significance. She alleges that Athena should have classified the variant as pathological, in … Read more