The four components of EngageUC aim to address key questions that will allow UC to develop policies to accelerate discovery, safeguard privacy, and

assure meaningful consent for research in the genomics age

Biorepositories: Engine of Precision MedicineRepositories provide genetic/genomic analysis of tissue samples and make data available for research; today, such facilities face new policy challenges.

Operations historically overseen by a single lab or PI must be coordinated to meet emerging research needs.

Rapid, low-cost gene sequencing and links to electronic health records create new challenges when it comes to assuring privacy.

Patients from California’s diverse communities must understand the risks and benefits of biorepositories when they are asked to donate tissue.

Engaging University of California Stakeholdersfor Biorepository ResearchDaniel Dohan, Elizabeth Boyd, Sarah Dry, Arleen Brown, Barbara Koenig, Steven Dubinett, Clay Johnston

Discovery – how can repositories best create and share data so research proceeds efficiently?

Privacy – how will repositories protect the individuals who donate, especially when the direction of future research projects is unknown?

Consent – given the state’s diversity, what is the best way to educate and get informed consent from Californians when they donate tissue for research?