UK Breast Cancer Campaign Tissue Bank - the first biobank to operate a data-return policy
To complement the data-return policy, the biobank also uses a purpose-built interoperable bioinformatics platform that is freely available as an online resource
Biobanks contain biological samples ethically collected from human donors with an aim to advance research into human disease. In 2008, a gap analysis conducted on behalf of the UK charity Breast Cancer Campaign identified the lack of access to well-annotated breast cancer samples as a considerable limitation to the research and, in particular, to the rapid transfer of promising laboratory findings to the clinic. To help bridge this gap, the Breast Cancer Campaign Tissue Bank was set up in 2010 as part of a coalition of four core academic centres of excellence in breast cancer research across the UK; Barts Cancer Institute, London, and the Universities of Dundee, Leeds and Nottingham, in partnership with the National Health Service. The Tissue Bank is the first widely available specialist breast cancer biobank in the UK.
To make the best use of the tissues curated by biobanks, researchers require that tissues are accompanied by well-annotated data. It usually includes anonymised information relating to each tissue donor. The requirement to anonymise data in research publications means that even positive data cannot be associated with the relevant individual tissues by future researchers. As a result, potentially important data generated from tissues procured from biobanks is not routinely available to future researchers; certainly not in a way that permits correlative analysis across a whole series of studies investigating the same tissue set. This loss of data association could result in unknown duplications of effort as well as the wasting of the valuable tissue resources, monies provided by funding bodies and efforts of the researchers.
During the establishment of the Breast Cancer Campaign Tissue Bank, the UK researchers aimed to maximise the use of data derived from the available tissue samples. It was crucial to develop a solution whereby data generated using these tissues could be returned to the bank and made available to other researchers. They developed this policy following discussions with the UK patient advocate group Independent Cancer Patients' Voice, whose members expressed a desire to see the best possible use of the data obtained from donated tissues to benefit future patients with breast cancer.
The policy requires researchers who obtain tissues from the Tissue Bank to return data generated from every sample back to the curators of the Tissue Bank in its raw form within 2 years. They reasoned this would give researchers sufficient time to complete their research on these tissues and publish their data, although there is some flexibility in the timelines. The Breast Cancer Campaign Tissue Bank is the first biobank to operate a data-return policy, adding considerable value to sample holdings. As outlined in the consent forms, they do not return individual research findings to patients or their clinical team. They appreciate that many patients consider it their right to receive feedback of incidental findings and this topic has been—and continues to be—debated extensively.
To complement the data-return policy, the Breast Cancer Campaign Tissue Bank also uses a purpose-built interoperable bioinformatics platform that is freely available as an online resource. This tool enables the mining of data from the breast cancer literature and the integration of different types of 'omics' and clinical data with publically relevant annotations from various resources, including common portals such as the NIH's National Center for Biotechnology Information, Ensembl, UniProt and Reactome. Over time, this online resource will enable additional mining of the data arising from research using tissues obtained from the Breast Cancer Campaign Tissue Bank.
Valerie Speirs of the Leeds Institute of Molecular Medicine and Adrienne Morgan of the Independent Cancer Patients' Voice, who published this news online 5 February 2013 in the Nature Reviews Clinical Oncology thank all members of the Breast Cancer Campaign Tissue Bank team, grant holders, staff members, patient advocates and the Operations Group. They thank the patients who have generously donated tissue to the Breast Cancer Campaign Tissue Bank. The authors declare no competing interests.
The full articles from the Nature Reviews Clinical Oncology you can read through the ESMO Scientific Journal Access programme.
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