How many biobanks exist in the United States? Where do biobanks obtain their funding? How many specimens are stored at biobanks? And who contributed those specimens?
Two years ago, researchers at the University of North Carolina at Chapel Hill sought to answer those questions and others—with a first-of-its-kind survey of biobanks in the United States. The result of their efforts is “a reasonable approximation of all biobanks in existence in the U.S. at this time,” as described in the Genome Medicine article where the survey results were published.
“Effective translational biomedical research hinges on the operation of ‘biobanks,’ repositories that assemble, store, and manage collections of human specimens and related data,” the researchers wrote. “Despite their rising prominence, little is known about how biobanks are organized and function beyond simple classification systems (government, academia, industry).”
The survey of U.S. biobanks ultimately provides a fascinating overview of a complex, changing landscape—one in which even finding biobanks posed special challenges: The researchers noted “the lack of a comprehensive registry of biobanks from which to sample.”
Nonetheless, the researchers identified 636 biobanks eligible for the survey; of these, 456 responded. The biobanks’ survey answers range from the expected (most of the biobanks reported being associated with an academic solution) to the potentially surprising (33 biobanks indicated that they held more than 500,000 specimens in storage).
For the purposes of the survey, the researchers defined biobanks as “an organization that acquires and stores human specimens and associated data for future research use.”
Parts of the survey are summarized below for Quorum Forum readers. The complete journal article—and more data from the survey—is available in full at Genome Medicine with a Creative Commons Attribution License. (Please also refer to citation information included at the end of this article.)
Biobanks by the numbers
Data sourced from Henderson, Gail E. et al. “Characterizing Biobank Organizations in the U.S.: Results from a National Survey.” Genome Medicine 5.1 (2013): 3.
Where do U.S. biobanks obtain most of their funding?
|Funding type||Number of responding biobanks|
|The larger organization biobank is a part of||133|
|Fees for services||49|
|Individuals or foundations||43|
|Clinical and Translational Science Award||11|
|Sale of specimens||10|
|Sale of other products||9|
|The network to which biobank belongs||5|
When were U.S. biobanks established?
|Year established||Number of responding biobanks|
|1980 or earlier||30|
|1981 to 1990||46|
|1991 to 2000||109|
|2001 to 2010||249|
|2011 or later||13|
How many specimens do U.S. biobanks store?
|Number of specimens in storage||Number of responding biobanks|
|Less than 500||63|
|500 to 999||28|
|1000 to 1999||31|
|2000 to 4999||54|
|5000 to 9999||44|
|10,000 to 49,999||70|
|50,000 to 99,999||38|
|100,000 to 499,999||65|
With what type of organizations are U.S. biobanks embedded?
As described by the researchers, “5% of responding biobanks are for-profit organizations. Seven percent are incorporated. Regardless of organizational form, 80% have internal oversight boards of some kind.”
The researchers also noted, “The majority of biobanks seem to fill a particular ‘niche’ within a larger organization or research area; a minority are concerned about competition for services, although many are worried about underutilization of specimens and long-term funding.”
|Organizations||Number of responding biobanks|
|Hospital or health care organization||105|
|Disease or health advocacy organization||19|
Where do biobanks obtain specimens?
|Sources of specimens||Number of responding biobanks|
|Direct from individuals donating them||343|
|Residual specimens acquired from clinical care in hospitals, clinical laboratories, or pathology departments||261|
|Residual specimens from public health departments or programs||19|
|Organ/body donation organization||7|
Information included in this article is sourced/adapted from Henderson, Gail E. et al. “Characterizing Biobank Organizations in the U.S.: Results from a National Survey.” Genome Medicine 5.1 (2013): 3. Web: http://genomemedicine.com/content/5/1/3. © 2013 Henderson et al.; licensee BioMed Central Ltd. “Characterizing Biobank Organizations in the U.S.: Results from a National Survey” is open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.