The UCSF Center for Community Engagement builds collaborative relationships between UCSF and the community, promotes civic engagement, fosters community health and well-being, and enhances the environment for education, patient care, research, and employment at UCSF. The Center serves as a bridge between UCSF and local communities, emphasizing partnerships that value and respect the assets and diversity of both and working to democratize precision medicine though community building, acknowledging and addressing the racism that long has impaired the health of people of color.
The UCSF Center for Health and Community have led efforts to develop stake-holder engaged approaches for educating patients about precision medicine and to support their involvement in research.Through engagement of diverse patient populations across the state of California researchers have gained insights that can be applied when designing research, patient consents, and research materials.
Driving Projects
In California 500,000 babies are born each year, some of whom have genetic mutations that cause disease or altered responses to medications. Recognizing which genetic variants cause problems is surprisingly difficult–harder than finding a needle in a haystack, where once you find the needle, you know it’s different from the hay. The team will search for the mechanisms by which variants impact the function of genes. With experts in biology, computer science, medicine, and ethics from Stanford, UCSF, and Berkeley this project, funded by the Chan Zuckerberg Biohub, will focus on serious newborn diseases and on gene variants that require customized drug choice and dosage.
Precision genomic screening raises multiple ELSI (ethical, legal, social, and policy) concerns. The purpose of the project, led by Barbara Koenig, PhD, and Galen Joseph, PhD, is to follow and assess the ELSI issues that accompany a pioneering randomized pragmatic clinical trial of a risk-based approach to breast cancer screening. The WISDOM (Women Informed to Screen Depending on Measures of Risk) study is a clinical trial that uses genomics to determine the appropriate use of mammography, and other forms of breast cancer screening, across the population. The trial compares annual mammography to a “personalized” approach to screening, using factors like age, race, family history and health history combined with genetic testing to offer a recommendation for the frequency and type of breast cancer screening a woman should have.
The UCSF Program in Prenatal and Pediatric Genome Sequencing (P3EGS) studies the utility of whole exome sequencing as a tool for 1) diagnosing infants and children with serious developmental disorders, and, 2) providing genetic information to parents when a prenatal study reveals a fetus with a structural anomaly. The team is also addressing ethical, social and economic issues in the delivery of genomic sequencing results to diverse populations, such as under represented minorities and the medically underserved.