Chapel Hill, N.C. Biobanks are organizations that collect, store and share human specimens (e.g., blood, solid tissues, hair) for research purposes. The rise of the human genome project and of large-scale genetics studies have spurred a dramatic increase in the number of biobanks in the last decade, increasing their importance in biomedical research.
But until now, biobanks in the U.S. have never been studied systematically, leaving few clear details as to how they are run or the policies and practices they use in managing their work.
A new study from the University of North Carolina published January 25, 2013 in the journal Genome Medicine reveals the huge diversity of U.S. biobanks and also raises questions about the best way to manage and govern them.
"Biobanks are increasingly important to scientific advances, but our decentralized, fragmented research enterprise system in the U.S. has encouraged their development without necessarily providing them with the tools to survive," says study leader Gail Henderson, PhD, professor and chair of social medicine at the University of North Carolina. She also heads UNC's Center for Genomics and Society.
Henderson and colleagues from UNC decided to address this paucity of information by inviting more than 600 biobanks in the U.S. to participate in an online survey. These included private and public, commercial and noncommercial, and many biobanks affiliated with hospitals and academia. Representatives of 456 U.S. biobanks (72 percent of the list invited) participated in the survey.
Among the main findings is their great diversity. "They get established for a variety of reasons; some accidental, some intentional. They vary in size, in when they were established, how formal they are as organizations, what kinds of specimens they hold, who pays for them, and where those specimens come from," Henderson notes.
In the survey, just over half (53 percent) l
|Contact: Les Lang|
University of North Carolina Health Care