PO81A LACK OF CONSENT TO DONATE BRAIN TUMOUR TISSUE FOR RESEARCH HAMPERS PROGRESS

Abstract

INTRODUCTION: Brain tumour tissue can be difficult for researchers to access. BRAIN UK is a collaborative virtual brain bank, facilitating access to under-utilised neuropathology archives for research. A review of National Health Service CNS biopsy archives revealed around 400,000 stored samples, accruing a further 18,500 annually. We aimed to determine how many of these samples were consented to use for research. Without obtaining this consent, it may not be possible to carry out testing on brain tissue samples using emerging diagnostic, prognostic or predictive tests which could improve disease management and access to new treatments. METHOD: 24 UK neuropathology centres were surveyed, by email, on their consent processes, recording and rates of consent. RESULTS: 23/24 centres participated in the audit, 16/23 (70%) obtained prospective informed consent but 6/23 (26%) did not. Of the 16 centres obtaining consent, 9/16 (56%) provided details of consent rates, 6 (37%) estimated their consent rates to be 95-100% of samples, 3 (19%) estimated rates around 10%. CONCLUSION: We estimated that only 30% of neurosurgical tissue samples had been consented to use for research. Robust systems for recording consent accurately were not consistent across the NHS and not all centres had ‘consent to research' procedures in place. Archived residual tissue could be a valuable research resource but could go unused due to lack of consent. This is despite research to suggest that patients are largely supportive of the use of their tissues in research.