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Cesagen · Research

Cancer Biobanking in Practice

Neil Stephens

Start date

2009-01-01

Background

The last decade has seen as increase in the formalisation of tissue collections into tissue banks: centralised holdings of ethically-sourced human tissue for research purposes. Their growing number is in-part a response to the Alder Hay organ retention scandal leading to the storage of human tissue coming under the scrutiny of the Human Tissue Authority.

This project aimed to articulate from a sociological perspective the challenges of establishing such a bank, by focusing upon the empirical example of the cancer biobank onCore UK.

onCore UK was established in 2005 receiving £4m funding from the Department of Health (50%), Cancer Research UK (25%) and the Medical Research Council (25%). It was a response to a National Cancer Research Institute portfolio evaluation that identified access to human tissue as a recurrent problem for researchers.However, during the lifetime of the research project onCore UK first had its role reconfigured - implying the cessation of biobanking activity – and was subsequently closed down. As such the project took a different tone.

Aims

The initial research design involved using onCore UK as a case study of a biobank interpreting and instantiating new regulatory models and developing standards for biobanks nationally. However, onCore UK's change of role also changed the focus of my research project and instead the focus became how institutions such as onCore UK work to make tissue valuable, and how subsequently that value can be lost.

Methods

The project used three research methods. Firstly, it conducted repeated sets of interviews with the entire staff of onCore UK once every 9 months during the project lifetime when onCore UK remained open. Secondly, observations were conducted at the numerous meetings and workshops onCore UK organised about best practice in cancer biobanking. Thirdly, documentary analysis was conducted on reports and other publications produced by onCore UK.

Findings

Cancer biobanks – like onCore UK – make diseased tissue valuable by establishing complex systems of storage, accountability and exchangeability. However, while biobanking practice is intended to provide a permanence and stability to the supply of tissue, the realities of their funding structures mean they can struggle for permanence and stability as institutions.When existing tissue collections unravel the tissue can quickly loose its value in the absence of the organisational structures that support them. In onCore UK’s case engagement with broader networks allowed some tissue to passed to new collections that found new forms of value, while the majority was destroyed.

Publications

Stephens, N. (2011) 'onCore UK: The £4m Cancer Tissue Bank that Closed' in The Gen, ESRC Genomic Network Newsletter, March 2011

Further information

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