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.