Genomic Data Sharing: Putting Principles and Policy into Practice

ELSI Friday Forum • October 8, 2021

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?

Panelist: Heidi Rehm, PhD (Massachusetts General Hospital)
Panelist: Keolu Fox, PhD (UC San Diego)
Moderator: Malia Fullerton, PhD (University of Washington)

Please see the attached transcript and resources files (located in the upper right-hand corner of the page) for more information on this topic, as well as the ELSIhub Collection "Technologies to Operationalize Indigenous Data Sovereignty"