Heidi Rehm, PhD
Chief Genomics Officer in the Department of Medicine and at the Center for Genomic Medicine at Massachusetts General Hospital
Keolu Fox, PhD
Assistant Professor of Anthropology
University of California, San Diego
Moderator: Malia Fullerton, DPhil,
Professor of Bioethics and Humanities
University of Washington School of Medicine
Abstract: Genomic data governance principles were largely developed for data collection and use in research contexts. Boundaries between genome research and clinical practice, however, are eroding, raising questions about whether current policies and assumptions behind those policies are still appropriate. This ELSI Friday Forum will address these questions – is the intent of data sharing what matters to data governance? If so, what does really matter? Can we assume that patients want their data to be shared if clinical genomic data leads to improvements in diagnostics, and further, that data can be shared for research purposes without express consent? What do we do if patients are uncertain about whether the use of their data will lead to health care improvements that will benefit them or their communities?
View online here.
ELSI Hub Friday Forum sponsored by NHGRI
Location and Address
Online