About the session:
The availability of large quantities of biospecimens and data for research use from biobanks (entities that collect, store and distribute biospecimens and data) has led to major advances in science and medical care. These
advances depend upon broad participation from individuals and groups, which is necessary to ensure the benefit of all. Maintaining the trust of research participants, the public and other stakeholders is critical to broad participation
in biobanking and biospecimen research. Remaining worthy of public trust requires authentic participant and public engagement; trust is essential for biobank social sustainability.
Discussion at this gathering will focus on what makes a biobank trustworthy. This 90-minute virtual program is designed for biobankers, researchers, IRB members, institutional officials, biobank participants, and their
representatives to discuss the factors that contribute to trustworthy biobanking. It will be an opportunity to identify best practices regarding topics such as consent, privacy, data sharing, and data security to help warrant
the trust of research participants, the public, and other stakeholders. It will also be an opportunity to explore what ISBER should be doing to educate and engage the public regarding biobanking activities.
Target Audience:
All ISBER members and biobankers are invited to attend. Furthermore, IRB members, institutional officials, community group members, scientists, industry representatives, pathologists, etc. are encouraged to attend.
Session Speakers:
- Barbara Koenig, Director, UCSF Bioethics, UCSF
(Moderator)
- Sara Harnish, Executive IRB Chair, Advarra
- Bradley Malin, Accenture Professor of Biomedical Informatics, Biostatistics, and Computer Science, Vanderbilt University
- Paula Kim, Founder & CEO, TRAC-Translating Research Across Communities
- Sharleigh Stevenson, President, Braver Stronger Smarter Foundation
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