Governing Biobanks - what are the challenges?
23-26 June 2008
Oxford, UK

Organisers:

Jane Kaye: The Ethox Centre, DPHPC, University of Oxford, UK

Draft Report

Summary

The purpose of this conference was to explore some of the complex and challenging issues that emerge from the governance of biobanks. Genomics research is on the crest of a wave, with discoveries of the variants responsible for common diseases, such as obesity and breast cancer, becoming increasingly frequent. These advances are aided by the rapid technological advances in genotyping, the accumulation of large datasets of freely-available sequence information, such as that provided by ENSEMBL, the SNP and International HapMap Consortiums, as well as the use of biobanks that collect genotypic and phenotypic data. Increasingly, we are seeing the development of large population biobanks, and moves towards a federated system of biobanks that crosses international boundaries, in order to provide the sample sizes and statistical power needed to trace the complex interactions between genes, lifestyle and environment. These developments raise interesting and challenging questions in terms of the governance of biobanks, and what might be considered to be the appropriate governance mechanisms in a global civil society. This is a topic that is of growing interest in the social sciences and humanities, but also is a matter that requires urgent investigation if the current growth of genomic resources is to be maintained.

This conference brought together some of the leading thinkers on issues of biobanks and governance from across the world. Governance was interpreted in broad way, to encompass an enquiry as to how biobanks should be designed at a micro-level, but also to include an assessment of the governance structures in which they are embedded. Some of the topical issues that speakers were asked to address were:- Is informed consent possible, in a world where datasets are shared or networked across national boundaries, and biobanks are used as resources by many different researchers for multiple different projects over many years? What is the relationship between individual privacy, family rights or interests, and the ‘public interest'? Who are the key actors in the regulation of biobanks at the national level, and what types of governance structures are emerging at an international level? If we are serious about benefit-sharing what regulatory models should we put in place for biobanks? In particular, how should regulatory regimes be designed to maximise the public good?

The conference built on research that has been conducted as part of the Governing Genetic Databases project conducted at the Ethox Centre, University of Oxford, (2005-2008 funded by the Wellcome Trust), and the Facilitation and Regulation of Research and Development Involving Human Genetic Databanks project (2005 – 2009 Australian Research Council) carried out by the Centre for Law and Genetics Universities of Tasmania & Melbourne. These two centres decided to pool their resources in order to fund one international conference in Oxford . By doing so, they were able to bring speakers from the USA, Australia and Asia to Europe, to bring new insights and to give an international dimension to this event.

Scientific Content

The conference asked scholars who had been working in the area of biobanking to focus their expertise and experience on the question of governance. In this aspect the conference was very successful and since then a number of conferences have started to focus specifically on this issues. It was important because it raised a number of questions and brought together a multi-disciplinary group of scholars. The European Science Foundation funding meant that young scholars from around Europe were able to attend and be exposed to free-ranging conversations by experts in this area. The plenary sessions were particularly good and encouraged a wide discussion. The opening plenary was a good start to the conference as it brought together some speakers who were outside the field of biobanking, bringing in fresh perspectives.

Assessment of the results & impact of the event

This was the first conference in the world that was solely dedicated to the issue of the governance of biobanks. It forced scholars to think about governance and biobanking in a way that they had not done before. This has stimulated thinking and will lead to more publications and research in this area. We will publish 12 papers from the conference in an edited book that will be published by Ashgate in 2009. In addition, we obtained additional funding from the Wellcome Trust to provide bursaries for people from countries outside of Europe who would otherwise be unable to attend. The Wellcome Trust funded 15 bursaries, which covered accommodation, registration, and travel costs for people from Vietnam, Argentina, Russia, The Gambia, Malawi, South Africa, Egypt and Japan. This with the ESF bursaries brought together a varied and dynamic group. From this experience, in the future I will encourage a mixture of people and will seek to obtain funding to fund people who would not usually attend such conferences.

Programme

The programme can be viewed as a pdf here.