Daniel Dohan, Elizabeth Boyd, Sarah Dry, Arleen Brown, Barbara Koenig, Steven Dubinett, Clay Johnston

1. Engaging University of California Stakeholders
for Biorepository Research
Daniel Dohan, Elizabeth Boyd, Sarah Dry, Arleen Brown, Barbara Koenig, Steven Dubinett, Clay Johnston
Biorepositories: Engine of Precision Medicine
Repositories 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.
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
1. Administrators Establish 2. Researchers Develop
System-Wide Governance Common Procedures for
Structures and Rules Biorespository Operations
 Discovery – how can repositories
best create and share data so
Ethical, Efficient, and Sustainable Approach
research proceeds efficiently? for Obtaining, Processing, and Sharing
Biospecimens and Data in UC System
 Privacy – how will repositories
protect the individuals who donate,
3. EngageUC Conducts an 4. Diverse Communities are
especially when the direction of RCT to Determine the Best Engaged and Educated to
future research projects is unknown? Way to Obtain Consent Provide Input on All Activities
 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?