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What is a biobank? Differing definitions among biobank stakeholders
D M Shaw1, B S Elger, F Colledge
1Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
Clinical Genetics
|September 5, 2013
Summary
Defining biobanks is crucial for collaboration. Researchers agree on core concepts like samples and data, but planned use and sharing are key criteria, impacting regulatory compliance and sample accessibility.
Area of Science:
- Biobanking and Biomedical Research
- Data Management and Governance
- Research Ethics and Regulation
Background:
- Widespread agreement exists on the broad concept of biobanks.
- Significant disagreement persists regarding the precise definition of a biobank.
- Understanding diverse stakeholder definitions is essential for biobanking advancement.
Purpose of the Study:
- To describe and analyze the varied definitions of 'biobank' used by different stakeholders.
- To identify core components and differentiating criteria in biobank definitions.
- To explore the implications of definitional ambiguity on research practices and regulatory adherence.
Main Methods:
- Qualitative research approach utilizing semi-structured interviews.
- Conducted interviews with 36 experienced biobanking stakeholders working internationally in Switzerland.
- Thematic analysis of interview data to identify common and divergent definitions.
Main Results:
- Key definitional elements include biological samples and associated data.
- The intended use and sharing of samples emerged as a critical defining criterion.
- Some researchers intentionally avoid the term 'biobank' to bypass regulatory requirements, such as informed consent.
Conclusions:
- Ambiguity in biobank definitions can impede research progress and collaboration.
- A clear, shared definition is vital for fostering inter-researcher cooperation and identifying sample resources.
- Addressing definitional discrepancies is important for navigating regulatory landscapes and promoting ethical biobanking practices.
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