This mixed-methods study, conducted between 2010 and 2012, examines the organizational features of U.S. biobanks, and the policies and practices that are employed by different types of biobanks in order to both protect human subjects and maximize scientific outcomes. Our study explores such topics as biobanks’ mission; their work; their relationships with specimen contributors; and their policies and practices governing specimen collection, storage, and use. Understanding these features is an essential foundation for a national dialogue on best practices for the use of specimens in translational and clinical research.
NHGRI R01 HG005227-01A1. Gail Henderson, PI. “From Specimen to Biobank: Using An Organizational Perspective To Study ELSI Issues”.
North Carolina Translational and Clinical Sciences Institute at UNC Supplement 5UL1RR025747-04S1. Marschall Runge, PI. “Enhancing Biobank Capacities Across CTSAs”. Gail Henderson, Supplement Lead.
UNC Center for Genomics and Society 1P50 HG004488 Gail Henderson, PI