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The Board and management of onCore UK are aware that the donation of health data and biosamples – and their analysis in depth by many projects over many years – raises a number of ethical concerns. They have committed to developing a public Ethics and Standards Framework for the charity. They will also ensure that safeguards are in place so that data and samples are used only for scientifically and ethically approved research.
onCore UK acknowledges that research based on human biosamples depends upon patients donating samples and information for altruistic reasons. It respects the fact that these donations are given in the expectation that they will be used in research for the benefit of others. Biobanks such as onCore UK 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 – onCore UK will maintain the chains of trust, custodianship and benefit along the supply chain from donors to end-user researchers. In addition, such activities will be conducted with consent and under cost-contribution financial models for the onward provision of samples along the supply chain.
The guiding principles for onCore UK are as follows:
- onCore UK’s biosample resources exist for the public benefit;
- onCore UK’s biosample resources will be based on donation with informed consent;
- onCore UK’s management of its biosample resources will protect public trust;
- onCore UK acts as custodians of its biosample resources;
- onCore UK exists to provide a quality service;
- onCore UK’s collection and storage of its biosample resources will be purposeful;
- onCore UK will not trade biosamples as commodities.
Central to all the sample collection activities that onCore UK will undertake is informed consent.
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 will be told what the samples may be used for and how they will contribute to research into cancer.
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