Engaging University of California Stakeholders for Biorepository Research

1. EngageUC:
Engaging
University of
California
Stakeholders for
Biorepository
Research

2. EngageUC
Engaging University of California
Stakeholders for Biorespository
Research
Elizabeth Boyd
Daniel Dohan
Sarah Dry
September 14, 2012

3. ORGANIZATION
Efficient, Ethical, and Sustainable System
for Obtaining Biospecimens and Data
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4. ORGANIZATION
Organization
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5. ACTIVITIES
Stakeholders
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6. ACTIVITIES
RCT to Determine Consent Method
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7. ACTIVITIES
EngageUC: Project Activities
Aim 1: Stakeholder Aim 2: RCT of Informed Aim 3: Policy
Engagement Consent Translation
(Months: 1-9) (Months: 10-30) (Months 30-36)
• Convene institutional • Select biospecimen • Convene IO’s,
officers to review/update research projects to include Researchers, and
policies on human subjects in informed consent RCT CAB to review RCT
in biospecimen research • Randomize potential results
• Convene biospecimen biospecimen participants to • Based on Aim 2
researchers to propose receive 1 of 3 options: results, develop
harmonized procedures standard consent, Portable harmonized policies
• Create community advisory Legal Consent, or for outpatient
board (CAB) via Community Informed biospecimen
Deliberative Democracy Systemwide Consent research
• Convene Officers, (CISC; Aim 1)* • Devise plan to
Researchers and CAB to • Compare consent quality, implement
review biospecimen policies trust in research, reasons harmonized policies
and procedures for accepting or declining, • Establish system to
• Develop Community and enrollment rate evaluate and
Informed Systemwide • Examine clinician/staff improve UC
Consent (CISC) for preferences using biospecimen
biospecimen research to be qualitative interview research processes
evaluated via randomized that includes a
trial permanent CAB
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8. ACTIVITIES
EngageUC: Timeline & Milestones
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