The size of U.S. biobank collections varies, in number of specimens (from tens to millions) and in the types and where they come from individuals, clinics, hospitals, public health programs, and research studies.
Henderson also points out that only a small minority are commercial businesses. "So, not surprisingly, most biobanks do not perceive being in a competitive market. But the majority are quite worried about funding, and many are concerned that the specimens they collect aren't being adequately utilized."
"Researchers and people whose specimens are being held need to be concerned that we don't have a system that is as efficient and effective as it could be," Henderson adds. "If you collect specimens but don't use them, this is a failure to deliver on the promise of advancing translational research, and thus an ethical as well as technical concern."
Biobanks, like the researchers who depend on their services and specimens, need guidance informed by knowledge of their practices and challenges, the authors state. Required are policies "as nuanced as the biobanks themselves," whether these policies address issues of privacy or identity protection, or advancement of research goals.
"Given the diversity in biobank organizational characteristics identified in our survey, it's likely that management and governance policies will have to be tailored to fit the particular context. One-size policies will not fit all," says Henderson.
|Contact: Les Lang|
University of North Carolina Health Care