Biobanks in the United States: How to Identify an Undefined and Rapidly Evolving Population

J., Boyer, Gregory; Whipple, Warren; Cadigan, R. Jean; Henderson, Gail E.

doi:10.1089/bio.2012.0034

Cited by 25 publications

(22 citation statements)

References 7 publications

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“…We employed a multifaceted search strategy to create a list of U.S. biobanks, which we defined as ''organizations that acquire and store human specimens and associated data for future research use'' (Boyer et al, 2012). For each biobank on our list, we recruited the director (or other knowledgeable representative) to complete the survey.…”

Section: Methodsmentioning

confidence: 99%

“Forward-Thinking” in U.S. Biobanking

Cadigan

Edwards

Lassiter

et al. 2017

Genetic Testing and Molecular Biomarkers

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Aims: Do biobanks enact policies and plans that allow them to anticipate and respond to potential challenges? If a biobank has one such policy or plan, is it likely to have more? Using survey data from 456 U.S. biobanks, we assess four possible indicators of such ''forward-thinking.'' Methods: We present response frequencies and cross-tabulations regarding policies for return of results and ownership of specimens, and for having a formal business plan and a plan for what happens to specimens if the biobank closes. We analyze the relationships among these indicators, using chi-square for tests of statistical significance.Results: Policies-Sixty-two percent of biobanks have a policy about returning individual research results; 70% have a policy designating ownership of specimens and/or technology. Having these two policies is significantly related ( p < 0.001). Plans-34% of biobanks have a formal business plan; 26% have a written plan for what will happen to the specimens if the biobank closes. Having these two plans is significantly related (p < 0.001). Relationships among indicators-only 7% of biobanks are forward-thinking across all four indicators; 12% are forward-thinking across none. Discussion: The two policies we examined tend to occur together, as do the two plans. These policies and plans seem to tap different aspects of accountability and responsiveness. Specifically, the policies reflect issues most commonly raised in the ethical and legal literature on biobanking, while the plans are indicators of sustainability, a separate area of concern in biobanking.

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Section: Methodsmentioning

confidence: 99%

“Forward-Thinking” in U.S. Biobanking

Cadigan

Edwards

Lassiter

et al. 2017

Genetic Testing and Molecular Biomarkers

Self Cite

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“…With the emphasis on the "essential" nature of biobanks to research infrastructure, 3,25 three key questions arise, which confounds our reasoning around biobanking:…”

Section: Biobanking Messages: What We Are Told What We Hear Message mentioning

confidence: 99%

Getting the message about biobanking: returning to the basics

Catchpoole¹

2017

BSAM

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Much has been written about biobanks and biobanking. Since biobanking rose to prominence in the 1990s and became a scientific discipline in its own right, the collection and distribution of human tissue samples or "biospecimens" has been the subject of much critique, debate, and assessment. However, what is the message these discussions provide the wider research community? Are they reflective of progression of a new discipline? Do they represent clarity in the field or confusion? At one point we are told that biobanks are vital infrastructure, yet in the next breath we are told that biobanks are complex, full of risk, inefficient, and unsustainable. Biobanks struggle to receive sustainable funding with many restructuring or closing down, producing dilemmas about what to do with the legacy resources. This review critiques five key messages being relayed by the biobanking community, identifying the five messages that are actually being received by the research community. It also presents a "back to basics" view for biobanking that will return our attention back to five fundamental principles that should guide the ongoing discussion. This includes that biobanking is about the active provision of tissue for research that is vital for improved health outcomes. This activity is founded in human interrelationships, is already performed routinely within hospitals, and is driven by the opportunity to learn from the information contained within the biospecimens. The examples provided will be drawn from New South Wales, Australia, where building a state-wide biobanking infrastructure has been implemented, and which highlight areas where back to basics approach will be beneficial. A back to basics view of biobanking will highlight that the current positions proposed to deal with these issues are mere "straw men" solutions and that the need for a fundamental shift in our thinking is the real issue that needs to be addressed.

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“…This increases the likelihood of biobank networking and provides strong motivation to pursue further linkages between biobanks, both nationally and internationally (Zika et al 2011). A major barrier to biobank networking has indeed been the lack of biobank inventories (Ahmed 2011), which may in turn reflect challenges in identifying individual biobanks (Boyer et al 2012). This was reflected in a European survey, where variable numbers of biobanks per country reflected the existence/absence of national biobank networks (Zika et al 2011).…”

Section: Biobank Network As a Means Of Improving Standardisation Andmentioning

confidence: 99%

A critical analysis of cancer biobank practices in relation to biospecimen quality

2015

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There are concerns that a substantial proportion of published research data is not reproducible, which may partially explain the frequent failure to translate pre-clinical results to clinical care. High-quality cancer biospecimens are needed for robust, reproducible research findings, with most researchers obtaining these specimens from cancer biobanks or tumour banks. This review provides an overview of the types of quality control (QC) activities conducted within cancer biobanks that pertain to biospecimen quality and of biospecimen quality reporting tools, including SPREC and BRISQ. We examine how QC assay results and other biospecimen data are communicated from biobanks to researchers, and whether these activities lead to improved biospecimen quality reporting within the literature and/or to improved research outcomes. We also discuss operational factors that limit QC activities within biobanks and evidence gaps requiring further research. In summary, whereas the provision of quality biospecimens is a common aim of cancer biobanks, QC activities remain underreported and are rarely discussed in the literature, compared with other aspects of biobank operations. Further research is required to determine how biobanks can most efficiently optimise biospecimen quality, and how communication between biobanks and researchers can be improved.

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Biobanks in the United States: How to Identify an Undefined and Rapidly Evolving Population

Cited by 25 publications

References 7 publications

“Forward-Thinking” in U.S. Biobanking

“Forward-Thinking” in U.S. Biobanking

Getting the message about biobanking: returning to the basics

A critical analysis of cancer biobank practices in relation to biospecimen quality

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