Join us on Friday, October 8, 2021, for the next ELSI Friday Forum: Genomic Data Sharing: Putting Principles and Policy into Practice.
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 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)
To continue the conversation please join fellow audience members for an informal discussion in a Zoom meeting immediately following the forum. The link will be placed in the Zoom Chat during the forum. For those who cannot attend the live event, the forum will be recorded and archived on the ELSIhub Video page.
Closed captioning and/or transcripts will be provided for live and recorded events.
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