Balancing Data Privacy and Data Sharing: Normative and Technical Approaches

ELSI Friday Forum • April 8, 2022

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?

Panelist: Bradley Malin, PhD (Vanderbilt University)
Panelist: Effy Vayena, PhD (ETH Zurich)
Moderator: Lucila Ohno-Machado, MD, PhD (UC San Diego)

Please see the attached transcript and resources files in the upper right hand corner of this page for more information on this topic, as well as the ELSIhub Collection, "Ethical and Legal Challenges Posed by the Implementation of AI Applications in the Healthcare Setting"