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Organisers
Jane Kaye, The Ethox Centre, DPHPC, University of Oxford, UK
Introduction
What is the purpose of this Conference? The purpose of this conference is 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 which requires urgent investigation if the current growth of genomic resources is to be maintained.
This conference will bring together some of the leading thinkers on issues of biobanks and governance from across the world. Governance will be 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 we have asked speakers to address are:- 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'? How do the different paradigms or research models of clinical and statistical research affect the ways in which biobanks are, or should be, governed? 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? How are regulatory powers exercised, and what accountability mechanisms currently exist, or should be put in place? What is the role of law in this process?
Who will come to this conference? This conference will pull together some of the recent research carried out in this area, as well as the most progressive researchers, in order to facilitate new directions and thinking. The conference will be of interest to people from a number of different disciplines, as well as policy-makers. The conference builds on research that has been conducted as part of the Governing Genetic Databases project conducted at the Ethox Centre, University of Oxford, (2006-2009 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 have decided to pool their resources in order to fund one international conference in Oxford . By doing so, we are 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.
Tuesday 24th June 2008 |
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12.30-14.00 |
Pre - Registration & Welcome Buffet Lunch |
14.00-18.00 |
OPENING PLENARY Setting the Interdisciplinary Context Welcome: Jane Kaye With the moves towards the use of many different kinds of datasets in genomics issues of privacy, the public interest, control over resources and how technologies shape the things that we do, come to the fore. The purpose of this plenary is to set the context for the conference. It draws upon the knowledge of three key thinkers in this field, who come from very different disciplinary perspectives, in order to lay out the threads that weave through the conference as a whole.
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14.00-15.00 |
Prof. Martin Bobrow University of Cambridge Scientific Values and Private Interests in Genomic Resources |
15.00-16.00 |
Prof. Tim Caulfield, Health Law Institute, University of Alberta , Canada What are the foundations of governance for biobanking? |
16.00-16.30 |
Refreshments |
16.30-17.30 |
TBC Prof. Susan Leigh Star ( Santa Clara University , USA ) Analytical frameworks for understanding the Governance of Biobanks Commentator: Prof David Weisbrot, President of the Australian Law Reform Commission |
17.30-18.00 |
Plenary Panel Session |
18.00 – 20.30 |
Cocktail Party & Buffet |
Wednesday 25th June 2008 |
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8.00-9.00 |
Light Breakfast |
9.00-10.45
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PLENARY II – Actors, Networks and Practices This plenary explores how people and technologies converge in the governance of biobanks. It seeks to:- identif y the individuals and groups that have a part in governance; understand the ways that governance is constituted through their actions and interactions; explore the co-production of governance, technologies and practices; consider the impact of vision and expectations in these relationships (promissory science and anticipatory governance); and ask how databases might influence the social relations that surround science. Prof. Peter Glasner, CESAGen, Cardiff University Commentator: Dr. Andrew Smart, Bath Spa University |
10.45-11.15 |
Morning Refreshments |
11.15-12.45
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Parallel Sessions This will be made up of submitted abstracts and divided into two or three streams |
12.45- 14.00 |
LUNCH |
14.00- 15.45 |
Parallel Sessions This will be made up of submitted abstracts and divided into two or three streams |
15.45-16.15 |
Afternoon Refreshments |
16.15-17.45 |
Plenary III – Regulatory Models and Benefit Sharing (CLG) This plenary will discuss the issue of governance as it relates to benefit sharing. 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? If we are not content to leave it to ‘market forces' and the ‘trickle down effect' how might we best build mechanisms into the governance of biobanks that will help lead to the equitable distribution of benefits to all stakeholders in the local, national and global contexts? Prof. Thomas Pogge, Australian National University/Columbia TBC Dr. David Winickoff, UC Berkeley , USA Commentator: TBC |
19.30
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CLOSE OF DAY GALA DINNER |
Thursday 26th June 2008 |
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8.00 – 9.00 |
Light Breakfast |
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9.00-10.30 |
PLENARY IV - Global Governance The regulation of biobanking is carried out at a national level, even though DNA samples and personal information are shared across national borders as part of global research activity. As we move towards a federated biobanking network, regulation and the standardisation of procedures are needed in order to that facilitate sharing. What global structures are needed to facilitate this process that exists outside of the national frameworks? Prof. Bartha Maria Knoppers – University of Montreal , Quebec , Canada Dr. Jane Kaye- Ethox Centre, University of Oxford , UK |
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10.30- 11.00 |
Morning Refreshments |
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11:00-12:30 |
Incorporating Participant Perspectives (CLG) Biobank participant's perspectives on sharing the benefits from biobanks vary across the world. What methods have been used to obtain the views of participants? Have participant's views been translated into policy? How should they be translated into policy and governance? Prof. Michael Burgess ( Canada ) Dr. Beverley McNamarra ( Australia ) Dr. Bjorn Myskja ( Norway ) TBC |
Parallel Sessions This will be made up of submitted abstracts and divided into two streams
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12:30-14:00 |
LUNCH |
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14:00-15:30 |
Global Equity and Biobanks (CGL) Perspectives from industry and analysts of the industry on the role industry should, could, and might play regarding the equitable distribution of benefits globally; in particular as it relates to the developing world and indigenous and other targeted populations. Prof Jeong-Ro Yoon (Korean Advanced Institute of Science and Technology, Korea) |
Parallel Sessions This will be made up of submitted abstracts and divided into two streams
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15:30-16:00 |
Afternoon Refreshments |
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16.00-17.30 |
CLOSING PLENARY Prof. Alastair Campbell –Talk Panel: Prof. Mike Parker, Prof. Andrew Webster TBC , Dr. Anne Cambon-Thomsen and one other |
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CONFERENCE CLOSES |
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The conference will be held at St. Anne's College in Oxford. Oxford itself, is the third most visited city in the UK, and is home to one of the oldest and most prestigious universities in the world.
Registration
Registration is closed.
