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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. Biobanks play a central role in the “chain of supply” that extends from the donors through to the end-user researchers. Each person or organisation interacting with the supply chain has a responsibility to adhere to common overall guiding principles and ensure that donors’ wishes are served.
The guiding principles can be summed up with reference to four entwined chains that define the responsibilities on all involved in the supply of human biosamples for research – the chains of trust, custodianship and benefit along the supply chain from donors to end-user researchers. In addition, such activities should be conducted with consent and under cost-contribution financial models for the onward provision of samples along the supply chain.
onCore UK supports the guiding principles as follows:
- Biosample resources exist for the public benefit;
- Biosample resources should be based on donation with informed consent;
- Biosample resources should be managed in a way that will protect public trust;
- Biobanks act as custodians of their biosample resources;
- Biobanks exist to provide a quality service;
- Collection and storage of biosample resources should be purposeful;
- Biosample resources should not be traded as commodities.
Informed consent should be central to all sample collection activities undertaken by biobanks.
The key to the successful collection, distribution and use of samples is the donors’ participation and continued cooperation. To help in gaining informed consent, and to involve them more closely in the whole process, donors should be told what the samples may be used for and how they will contribute to research into cancer. onCore UK consent documents and templates have been approved by an NHS Research Ethics Committee and are available in several languages.
onCore UK has developed a template information sheet and consent form which may be downloaded and adapted to your needs.
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