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Procedures for access by scientists to the study data and materials

The Generations Study welcomes enquiries from scientists about potential uses of the data and samples for research. The study is focussed on breast cancer, but will also consider uses for other medical research if this does not detract from the prioritisation of breast cancer research. All such research is conditional on the strict need for confidentiality of individual participant’s data and samples. No individually identifiable data will be released to scientists outside the study team.

Access to all data and biological samples from the study is controlled by the Study Oversight Body, which includes representatives of Breast Cancer Now and The Institute of Cancer Research, as well as independent scientists and study participants. Given the limited and depletable nature of the samples, their use is particularly carefully controlled in order to optimise the informativeness of the Study in the long-term.

Access application

Expression of interest: In order to obtain access to the Generations Study Materials, scientists should first submit a written request for access to the Principal Investigator. 

Application Review: The Principal Investigator and Oversight Body will assess: (i) whether the proposed research use meets the required criteria for access (including its scientific importance and whether it has, or is likely to be able to gain, any relevant ethics approval); (ii) whether the amount of depletable sample required is scientifically justified; and (iii) the cost of providing such data and/or samples;

Agreement to use the materials may be dependent on the applicants entering into an Material Transfer Agreement [MTA] or Data Transfer Agreement [DTA], paying access charges (which will be itemised in the response), or other conditions (e.g. award of funding; obtaining ethics approval) being met within a set period of time;

Access charges: Researchers may be charged for access, on a cost-recovery basis. There is a variable component which depends on what is being accessed, calculated as a simple cost recovery of The Generations Study internal costs plus any third party costs incurred by the Study. This component may include charges for administration, sample extraction, sample assays, data derivation and extraction. It will be payable prior to the release of any data or samples.

Material Transfer Agreement: For approved applications, the MTA or DTA will need to be executed and any access charges paid before release of data and/or samples to the approved researcher.