title: EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California.
abstract: Biorepositories, or biobanks, provide researchers with access to biological samples and associated data in support of translational research. Efficient operation and ethical stewardship of biobanks involves coordinated efforts among multiple stakeholders including researchers who manage and use the repository, institutional officials charged with its oversight, and patients and volunteers who contribute samples and data. As advancements in translational research increasingly involve more data derived from larger numbers of diverse samples, the size and governance challenges facing biorepositories have grown. We describe an approach to developing efficient and ethical biobank governance that includes all major stakeholders. This model provides a pathway for addressing the technical and ethical challenges that must be resolved to ensure biorepositories continue to support translational research.
authors.affiliation: Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, California, USA.
authors.forename: Sarah B
authors.initials: SB
authors.lastname: Garrett
authors.affiliation: Departments of Social and Behavioral Sciences and Anthropology, History, and Social Medicine, University of California, San Francisco, California, USA.
authors.forename: Barbara A
authors.initials: BA
authors.lastname: Koenig
authors.affiliation: Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, California, USA.
authors.forename: Arleen
authors.initials: A
authors.lastname: Brown
authors.affiliation: Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, California, USA.|Clinical and Translational Science Institute, University of California, San Francisco, California, USA.
authors.forename: Jen R
authors.initials: JR
authors.lastname: Hult
authors.affiliation: Department of Medicine and Office of Research and Economic Development, University of California, Riverside, California, USA.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Boyd
authors.affiliation: Department of Pathology and Laboratory Medicine, David Geffen School of Medicine, University of California, Los Angeles, California, USA.
authors.forename: Sarah
authors.initials: S
authors.lastname: Dry
authors.affiliation: Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, California, USA.
authors.forename: Daniel
authors.initials: D
authors.lastname: Dohan
mesh_terms: D018070:Biological Specimen Banks / Q000941:ethics*; D035843:Biomedical Research / Q000941:ethics*; D006801:Humans; D007258:Informed Consent; D014495:Universities
keywords: biorepositories; patients; population; translational research