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Characterizing biobank organizations in the U.S.: results from a national survey

Gail E Henderson1*, R Jean Cadigan1, Teresa P Edwards2, Ian Conlon3, Anders G Nelson1, James P Evans4, Arlene M Davis1, Catherine Zimmer23 and Bryan J Weiner5

Author Affiliations

1 Department of Social Medicine, CB 7240, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7240, USA

2 HW Odum Institute for Research in Social Science, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-3355, USA

3 Department of Sociology, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-3355, USA

4 Department of Genetics, CB 7264, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7264, USA

5 Department of Health Policy and Management, CB 7411, UNC Gillings School of Global Public Health, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599-7411, USA

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Genome Medicine 2013, 5:3  doi:10.1186/gm407

Published: 25 January 2013

Abstract

Background

Effective translational biomedical research hinges on the operation of 'biobanks,' repositories that assemble, store, and manage collections of human specimens and related data. Some are established intentionally to address particular research needs; many, however, have arisen opportunistically, in a variety of settings and with a variety of expectations regarding their functions and longevity. Despite their rising prominence, little is known about how biobanks are organized and function beyond simple classification systems (government, academia, industry).

Methods

In 2012, we conducted the first national survey of biobanks in the U.S., collecting information on their origins, specimen collections, organizational structures, and market contexts and sustainability. From a list of 636 biobanks assembled through a multi-faceted search strategy, representatives from 456 U.S. biobanks were successfully recruited for a 30-minute online survey (72% response rate). Both closed and open-ended responses were analyzed using descriptive statistics.

Results

While nearly two-thirds of biobanks were established within the last decade, 17% have been in existence for over 20 years. Fifty-three percent listed research on a particular disease as the most important reason for establishment; 29% listed research generally. Other reasons included response to a grant or gift, and intent to centralize, integrate, or harmonize existing research structures. Biobank collections are extraordinarily diverse in number and types of specimens and in sources (often multiple) from which they are obtained, including from individuals, clinics or hospitals, public health programs, and research studies. Forty-four percent of biobanks store pediatric specimens, and 36% include postmortem specimens. Most biobanks are affiliated in one or multiple ways with other entities: 88% are part of at least one or more larger organizations (67% of these are academic, 23% hospitals, 13% research institutes). 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.

Conclusions

Effective utilization of biobank collections and effective policies to govern their use will require understanding of the immense diversity found in organizational features, including the very different history and primary goals that many biobanks have.

Keywords:
Biobank; biorepository; governance; survey