The CCB welcomes new members. Any organisation based in the UK, which collects and distributes biosamples for cancer research (not necessarily in the UK), may apply to join. The NCRI also encourages new banks that are planning to collect and distribute materials, to join at an early stage of setting up.

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Research based on human biosamples depends upon patients donating samples and information for altruistic reasons. We respect the fact that these donations are given in the expectation that they will be used in research for the benefit of others.



Best Practice

Guiding Principles

 

Biobanks are not isolated entities. They exist within an "ecosystem" of stakeholders that is diverse and includes the public, patients, healthcare workers, scientists, government, funders of science, providers of healthcare services, ethicists, regulators and others.

Biobanks play a central role in a multidisciplinary chain of supply that extends from donors through to researchers, influenced by the many stakeholders who interact with the supply processes. Each person or organisation interacting with this
chain of supply has a responsibility to adhere to over-arching guiding principles, to ensure that biosample supply is served and benefits realised.

The Guiding Principles of the Confederation place responsibility on all involved to maintain
chains of trust, custodianship and benefit along the supply chain for biosamples from donors to researchers. In addition, such activities should be conducted with appropriate consent and under cost-contribution financial models for the provision of biosamples for clinical research.

 

The CCB's Guiding Principles can be summarised as:

  • - Biosample resources exist for the public benefit
  • - Biosample resources should be managed in a way that will protect public trust
  • - Biobanks act as custodians of their biosample resources
  • - Biosample resources should be based on donation with appropriate consent
  • - Biobanks exist to provide a quality service
  • - Collection and storage of biosample resources should be purposeful
  • - Biosample resources should not be traded as commodities

View the CCB's Guiding Principles document

 

Appropriate Consent

Appropriate consent should be generic and enduring. Use of samples for defined studies, with specific consent for each study, does not constitute biobanking in accordance with the CCB's Guiding Principles, since samples cannot be made available to other researchers or for further studies without additional consent.

Biosample donation for use in biomedical research should be made in the context of informed consent. As well as details of any specific studies planned for samples, it is important that the process of obtaining generic research consent includes information or discussion about the range of potential uses to which samples may be put, in particular where these may be sensitive or emotive to the donor.