To maximize benefits for patients, broad access to comprehensive genomic datasets is necessary. However, data sharing is in tension with privacy obligations to individuals and groups, and threatens autonomy and control over data use. Data sharing policies, governance strategies and technical solutions have been proposed and implemented to resolve this tension. However, full resolution of this issue has not been achieved. What do ELSI scholars, data scientists, policy makers, health researchers and other stakeholders need to do to move forward? Join the discussion with panelists Bradley Malin, PhD and Effy Vayena, PhD moderated by Lucila Ohno-Machado, MD, PhD. |
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