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Cited by 198Ethics in Clinical ResearchResearch Data Management PracticesHealth and Medical Research Impacts

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

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Henderson, Gail E, Cadigan, R Jean, Edwards, Teresa P, Conlon, Ian, Nelson, Anders G, Evans, James P, Davis, Arlene M, Zimmer, Catherine +1 more·2013·Genome Medicine
DOI 10.1186/gm407PMC PMC3706795
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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.

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  • Actual practice of informed consent for biospecimen research varies, as collections of biospecimens (or biobanks) are highly heterogeneous in terms of tissue type, procurement situation, and geographic, social, and historical context.

    “Actual practice varies, as collections of biospecimens (or biobanks) are highly heterogeneous in terms of tissue type, procurement situation, and geographic, social, and historical context (56, 58,60, 126, 146).”

    From Lessons from HeLa Cells: The Ethics and Policy of Biospecimens (2016) · cites this paper as [56]

    The Results and discussion (Specimen collections; page not specified) document variation in specimen types and how biobanks acquire them. The Conclusions (page not specified) connect that diversity to questions about consent and governance, but do not establish that actual informed-consent practices vary or document heterogeneity specifically by geographic, social, and historical context. (LLM, conf=0.85)

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  • Biobanks or other repositories or databases used in their study have commercial interests that might influence research integrity.

    “Authors should disclose funding sources for biobanks or other repositories or databases used in their study because these entities also have commercial interests that might influence research integrity.124 125”

    From Strengthening the Reporting of Observational Studies in Epidemiology using Mendelian Randomisation (STROBE-MR): explanation and elaboration. (2021) · cites this paper as [124]

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Authors
Henderson, G. E., Cadigan, R. J., Edwards, T. P., Conlon, I., Nelson, A. G., Evans, J. P., Davis, A. M., Zimmer, C., & Weiner, B. J.
Affiliations
University of North Carolina at Chapel Hill (US)
Corresponding author
Henderson, Gail E
ORCID
Venue
Genome Medicine
Publisher
Springer Science and Business Media LLC
Published
2013-01-25
Volume
5
Issue
1
Pages
3-3
ISSN
1756-994X (ISSN-L)
DOI
10.1186/gm407
PMC
PMC3706795
OpenAlex
W2168218485
Cited by
198
References
55
Citations by year
2026: 9 · 2025: 7 · 2024: 5 · 2023: 7 · 2022: 12 · 2021: 19 · 2020: 8 · 2019: 11 · 2018: 13 · 2017: 19 · 2016: 27 · 2015: 23 · 2014: 23 · 2013: 15
FWCI
30.00
Type
journal article
Language
en
Open access
Licence
Locations
  • Genome Medicine (publishedVersion, cc-by)
  • Europe PMC (PubMed Central) (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Carolina Digital Repository (University of North Carolina at Chapel Hill) (submittedVersion, cc-by)
  • Carolina Digital Repository (University of North Carolina at Chapel Hill) (submittedVersion)
  • UNC Libraries
Funders
  • Georgia Clinical and Translational Science Alliance
  • National Human Genome Research Institute (P50HG004488, HG004488)
  • National Center for Research Resources (UL1RR025747)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Physical Sciences › Computer Science › Information Systems › Research Data Management Practices
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Health and Medical Research Impacts
Keywords
biobanks, biobank sustainability, biobank governance, postmortem specimens, translational research

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