The 1958 Birth Cohort Biomedical Resource - facilitating access to data and samples and enhancing future utility

The 1958 Birth Cohort (1958BC) recruited 98% (17,416) of all children born in Great Britain during one week in March 1958. Participants have since been followed longitudinally and have taken part in up to eight further social-science-led surveys (1965-2008) as well as a range of other special initiatives and media events. But, despite the undoubted scientific success of 1958BC, strategic thinking in the new Millennium suggested the need for an additional bio-medically focussed survey. The Biomedical Survey took place in 2002-2003 (participants aged 44-45) under the MRC?s ?Health of the Public? initiative. In total, 12,037 subjects were contacted and 9,377 were interviewed. The aim was to obtain critical biomedical information via questionnaires, physical measures and biospecimen collection and to use this to examine how developmental, lifestyle, and environmental factors act throughout the lifespan to influence ill health, and physiological and psychological function in early middle age. At the same time, the Wellcome Trust funded creation of immortal cell lines from the biosamples in the Survey and these now provide an unlimited source of DNA in more than 7,500 study participants. The Biomedical Resource that now integrates all of the data and samples from the biomedical survey has subsequently provided a wonderful enabling resource for UK Bioscience. More than 658 awards of data and samples have been made to research groups across the world (mainly in UK) since 2002 and, so far, more than 350 peer reviewed publications have been based on these awards. Perhaps most impressively, the 1958BC Biomedical Resource provided 3,000 controls in Wellcome Trust Case Control Consortium (WTCCC) that investigated the genes causing 8 important chronic diseases including diabetes, coronary artery disease and depression. WTCCC was designated international ?Research Leader of the Year? in by Scientific American Magazine in January 2008. But the Biomedical Resource and access to it both require careful management and thoughtful strategic development. This infrastructural grant, coming jointly from the Universities of Leicester and Bristol, reflects strategic thinking at MRC, WT and ESRC. It will secure sustainability of data and sample access and strategic development of the Resource until 2014. The proposal subsumes three complementary objectives: (1) secure the basic infrastructure; (2) enhance the infrastructure from an administrative and strategic management perspective; (3) enhance the infrastructure from a scientific perspective. These objectives will ensure that both the 1958BC, and UK Bioscience, are best placed to face the scientific challenges of the future.

This infrastructural project is targeted at strategic development of that component of the 1958 Birth Cohort (1958BC) that is known as the ?Biomedical Resource?. It will ensure that optimum utility can be extracted from the Resource during 2011-2014 and that the 1958BC will then be well placed to maintain and extend its internationally hailed contribution to research in the biomedical and social sciences. The proposal subsumes three complementary objectives: (1) secure the basic infrastructure as it now exists, thus ensuring that the successful systems that have already been implemented can be maintained into the future; (2) enhance the infrastructure from an administrative and strategic management perspective to ensure that it can face expected and unexpected future challenges and opportunities both effectively and resiliently; (3) enhance the infrastructure from a scientific perspective to ensure that both the 1958BC, and UK Bioscience, are best placed to face the scientific challenges of the future. The new science underpinning this application is focused entirely on optimising and enhancing the utility of the pre-existing Biomedical Resource ? the proposal contains no hypothesis-driven research and no funding is sought for additional data or sample collection from study participants. The responsibility for strategic development of the cohort as a whole ? including planning for future data sweeps - will remain with the Centre for Longitudinal Studies (CLS). This application reflects a considered evolution in the thinking of the funders (MRC, WT, ESRC) about strategic development of the 1958BC Biomedical Resource and of the systems and policies governing access to it. Initially, responsibility for access and strategic development lay with the Principal Investigators of the original grant. But, it later became clear that if resource utility was to be optimised it should be managed and developed by independent scientists and administrators. In 2008, responsibility for managing the 1958BC biobank therefore transferred to ALSPAC laboratories at the University of Bristol under a joint grant from MRC/WT. Then, in 2009, responsibility for oversight and strategic development of the Biomedical Resource as a whole passed to the independent access committee chaired from the University of Leicester under another small grant from MRC/WT. Following strategic discussions with MRC, WT and ESRC, the University of Leicester and University of Bristol now outline a vision for joint management of the Biomedical Resource, to include its strategic development as an infrastructure, under a grant requesting limited - but adequate - funding to ensure sustainability.