Biobanks in the United States: Surveying a changing landscape

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
Federal government 158
The larger organization biobank is a part of 133
Fees for services 49
Individuals or foundations 43
State government 11
Clinical and Translational Science Award 11
Sale of specimens 10
Other 10
Sale of other products 9
The network to which biobank belongs 5
None 4
Information reported by 443 biobanks.

 

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
Information reported by 447 biobanks.

 

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
500,000 + 33
Information reported by 443 biobanks.

 

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
Academic institution 307
Hospital or health care organization 105
Research institute 60
Federal government 38
Disease or health advocacy organization 19
State government 17
Philanthropic organization 11
Corporation 10
Other 7
Consortium 5
Information reported by 394 biobanks embedded in at least one larger organization.

 

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
Research 60
Residual specimens from public health departments or programs 19
Vendors 8
Organ/body donation organization 7
Other repositories 7
Other 6
Orphaned collections 4

 

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.

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