Engaging University of California Stakeholders for Biorepository Research

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

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Engaging University of California Stakeholders for Biorepository Research

  1. 1. Engaging University of California Stakeholdersfor Biorepository ResearchDaniel 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?

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