Principles for organisations integrating with the UKCRC Tissue Directory.
This document sets out the core principles that the Centre should adopt when considering any commercial opportunities that may arise from the Directory. These principles shall be used by the legal teams at UCL or Nottingham to draw up an agreement with an organisation wishing to engage with the Directory under one of two possible scenarios:
(1) An organisation wishing to connect to the Directory
This is only applicable to companies that seek to develop or extend their platform to include UK biobanks. Their platform must be focused on enabling UK biobanks to be discovered by the research community. Any approach for access to the underlying database solely for marketing purposes is not in scope and requires approval from funders and the executive committee.
(2) An organisation requesting that we pass those searching the Directory to their system
The Directory allows those searching it to short-list relevant biobanks, but additional steps may be needed after this shortlisting. For example, other organisations may hold additional data from the shortlisted biobanks or may offer services allowing searchers to directly communicate with those biobanks. Organisations wishing the Centre to drive traffic to their website solely for marketing purposes is not in scope and requires approval from funders and the executive committee.
Principle 1: Researcher or biobank benefit: Any partnership developed should increase the relevance of the Directory to researchers, most likely a specific sub-group of the research community. A partnership that does not generate benefit to the research community or the biobanks registered (but does bring financial benefit to the Centre) should be individually agreed with the relevant governance oversight groups of the Centre.
Principle 2: A service the Centre cannot provide: An assessment should be undertaken by Centre staff to demonstrate that the partnership is required and that the services the company can offer the research or biobank community are in addition to what the Centre could realistically achieve in isolation.
Principle 3: Effort assessment: A technical assessment should be undertaken by Centre staff to understand the complexity of integrating the systems. The Centre Director will decide whether the ratio of effort to reward is sufficient to justify any time investment.
Principle 4: Charge those who charge: If the organisations linking with the Directory charge for their services then the Centre should ensure it receives income that reflects the added-value the integration with the Directory provides to such an organisation. Any fee received shall be used to ensure the long-term sustainability of the Centre and to underwrite current and future core activities.
Principle 5: Transparency: Any integration between the Directory and the systems of another organisation shall be transparent to the users of the Directory. This will include a statement on the perceived benefit (Principle 1). In scenario 2 this will include an indication to the user whether these additional services will incur a cost and whether the Centre receives any income as a result. The principles from this document will be made available on the website.
Principle 6: Privacy: The Centre will not pass the contact details of the biobanks onto third parties, but will leave it up to the individual Biobanks to decide whether to engage. Only if they have an agreement with the third party will any links be made.