EngageUC is a collaboration that brings together researchers, health care providers, University of California leaders, and community members to:
- develop policies about the management of leftover blood and tissue samples collected for research;
- create community-guided governance for biobanks across the 5 University of California medical campuses; and
- redesign the process of asking patient permission for research use of leftover biological samples, including research using genetic information.
Community Engagement in California
In 2013, EngageUC will hold two Deliberative Community Engagement events—one in San Francisco and one in Los Angeles—bringing together Californians from diverse backgrounds to offer advice to the University of California about research biobanks.
What is community engagement?
Community Engagement events allow members of the general public to come together to talk about an important issue, consider all the options, and then make recommendations. “Deliberants” are people who participate in the community engagement. Deliberants are selected at random from the California population. The purpose of the EngageUC events is to help people at the University of California develop the best possible policies about research with human samples.
At the EngageUC community engagement events, deliberants will have the opportunity to talk with scientists, patient advocates, disease experts, and research leaders on a number of topics related to research using human tissue and blood samples. Some issues we will talk about include:
- What is biobanking and how does it work?
- What are the benefits of research using tissue and blood samples?
- What protections are in place for data and samples?
- Why are some people in our society concerned about sharing samples with researchers?
- How do institutions in the U.S. assure that biobank participants are fully informed and grant permission for their samples to be used?
- How do institutions provide oversight and governance to biobanks?
WHAT ARE BIOBANKS?
A biobank is a collection of biological samples of human blood and tissue for use in research. Samples are frozen or stored in order to be used at a later time. Biobanks are critical resources for research.
The tissue samples and information in biobanks contain genetic information and can be linked to personal and health information. Research with biobanks will refine what we know about disease. For example, research linked to genetic information will provide genetic markers for diagnostic tests and determine why people respond differently to drugs.
Leftover Blood and Tissue
Many patients have tests performed on their blood or other body fluid (such as urine) as part of their routine care. After testing has been completed there is often some tissue left over. There may also be leftover tissue following biopsies or surgeries. These leftover fluids and tissues can be very valuable for different types of research, especially when researchers are also allowed to study patient information.
How do Patients Give Permission for Research?
EngageUC is interested in how Californians would prefer samples from human tissue and blood be shared with researchers, and how they would like to be informed about the storage and protection of these samples and patient information. This is often referred to as the informed consent process. The informed consent process is meant to ensure that patients understand what they are agreeing to when participating in research, including the potential risks and benefits. It often involves a conversation with UC staff who would give the patient all the relevant information about the research and answer questions that the patient might have. Sometimes, the potential participant is asked for a signature as a sign of their voluntary agreement to participate.
The EngageUC Deliberative Community Engagement events are part of a larger program that aims to develop and implement an ethical, efficient, and sustainable system for obtaining, processing, and sharing biospecimens across the five medical campuses of the University of California. Learn more about EngageUC (Engaging University of California Stakeholders for Biorepository Research), including its affiliation with UCSF's Clinical and Translational Science Institute (CTSI).