Abstracts: Sessions 1 - 5

Chair: Hugh Whitall - Director of the Nuffield Council on Bioethics.

Speakers:

• Graeme Laurie is Chair of Medical Jurisprudence at The University of Edinburgh and Chairman of the UK Biobank Ethics and Governance Council (EGC)

UK Biobank: Ethics and Governance Abstract:
I will discuss the approach to ethics and governance taken by the principal funders of the UK Biobank (the Medical Research Council, the Department of Health, the Wellcome Trust) which will be one of the world's largest biological sample collections and databases for research into the genetic and environmental factors involved in common diseases of middle age. I will explore the decision to establish an oversight body, the development and principles of the public Ethics and Governance Framework developed for the resource, the creation of the UK Biobank Ethics and Governance Council, and it's purpose, structure and practice. I will conclude by considering the features of the Intellectual Property and Access Policy of UK Biobank, including the role of the Ethics and Governance Council in the management of access.

• Sarah Cunningham-Burley is Professor of Medical and Sociology, University of Edinburgh, an associate of Innogen and a member of the Human Genetics Commission (HGC)

Abstract:
The aim of Generation Scotland is to create an ethically sound, family and population based infrastructure to identify the genetic basis of common complex diseases such as cancer, stroke, heart disease and mental health problems. The concept and associated program have developed over several years and now involve three complementary projects: the Scottish Family Health Study; Genetic Health in the 21st Century; and the Donor DNA Databank.

Together these projects will recruit a cohort of 50,000 individuals. A programme of public consultation and engagement has run alongside the first four years of the development of the database. This has involved focus groups with diverse publics, in-depth interviews with stakeholders and participating families, citizen engagement workshops and a survey of 1000 adults in Scotland.

This paper will report on the range of concerns expressed through these different methods and on the role of social scientific research in the development of health related genetic databases.

• Søren Holm is a Professorial Fellow in Bioethics at Cardiff Law School and a member of Cesagen. He is a medical doctor and philosopher and a member of the Nuffield Council on Bioethics

"Forensic biobanks - justifiably a breed apart?" Abstract:
Many countries are currently building forensic biobanks for use in policing, crime prevention and legal identification. The rules governing such biobanks are often quite different from rules applying to other kinds of biobanks with regard to consent, conditions for use, transparency and general governance. This paper will consider to what degree there is justification for regulating forensic biobanks differently from other biobanks.

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Genomics in developing countries
Is genomics just the latest “technological fix” for the poor world?

Chair: David Dickson - Director, SciDev.net

Speakers:

Transnational governance of biotechnology in southern Africa: a clash between institutions and a relentless context?
Julius Mugwagwa - Innogen.

Success beyond science: Vaccine Innovation Partnerships and ‘invisible innovation'
Rebecca Hanlin - Innogen.

Civil society and the biotechnology divide in Kenya
Matthew Harsh - ESRC Genomics Policy and Research Forum.

Abstract:
A strength of the EGN's work in developing countries has been illuminating the social and political processes that underline the development of genomics-based biotechnologies. Our work has addressed such questions as: What do terms like 'partnership' and 'capacity-building' mean in the development of biotechnologies? Who decides how biotechnologies should be produced and used in developing countries, and how are these technologies regulated? Drawing on research in the health and agricultural sectors, this session asks if genomics is just the latest 'technological fix' for the poor world.

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Stem cell landscapes
What is driving stem cell research?

Chair: Dr. Maggie Leggett - Head of Public Engagement, BBSRC.

• Governing stem cell banking in an international context: Spain and the UK.
  Neil Stephens - Cesagen, University of Cardiff
• In and beyond the laboratory: a comparative perspective on the regulation of stem cell research practices in a trans-national context.
  Dana Wilson-Kovacs and Susanne Weber - Egenis, University of Exeter
• Risk governance and regulation of stem cells as therapeutic products.
  James Mittra - Innogen, The University of Edinburgh
• Stem cell researchers and public engagement: constructing scientific citizenship.
  Nicola Marks - Innogen, The University of Edinburgh

Abstract:
In recent years, stem cell research has become an international scientific endeavour in biomedicine that has raised great expectations in the development of cures for a wide range of degenerative diseases and injuries. At the same time, it has been subject to heated ethical controversies in different countries and has also been met with scientific and commercial uncertainties in moving towards the clinic. As a result, the science has been shaped by the implementation of different national and international ethical and legal regulations, science policies and commercial infrastructures.

The papers presented in this session discuss the impact of different areas of science governance on the constitution of stem cell science as local, national and international practice. In particular they focus on the regulation of stem cells banks (1), of research sites (2), and of translational commercial enterprises (3), and examine stem cell researchers’ views of public engagement (4).

The first considers the distinct forms that the institutionalisation of stem cell banks in the UK and Spain take in the production of quality-assured science and ethical legitimacy, while the second examines the shaping of scientific practices by regulatory frameworks in and beyond stem cell research sites. The third paper presents an analysis of the salient issues emerging in the risk governance of various stem cell therapies, the complexity of national and international regulatory proposals; and the impact of emerging regulation/policy on both public and commercial sector research and development. The final paper in this session investigates how stem cell researchers in the UK and Australia talk about public engagement, and how this creates and/or limits opportunities for citizen involvement in the field of stem cell science.

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Psychiatric genomics
Will genomics revolutionise psychiatry and the understanding of the brain?

Chair: Professor Paul Atkinson, Cesagen

Speakers:

• Overview of Scientific Developments in Psychiatric Genomics
  Professor Nick Craddock - Department of Psychological Medicine, University of Cardiff
• Tracing New Forms of Multidisciplinary Work in Psychiatric Genomics
  Dr. Michael Arribas-Ayllon - Cesagen, Cardiff University
• Implications of scientific developments for clinic and patient populations
  Dr. Katie Featherstone - Cesagen, Cardiff University
• Public Engagement: Interactive Drama Exploring Genetics and Mental Health
  Flo Ticehurst - Wales Gene Park, Cardiff University

Abstract:
The ESRC Centre for the Economic and Social Aspects of Genomics (CESAGen) is developing a programme of work examining clinical and patient responses to genetic technologies for polygenic conditions within in its `Biomedicine, Identity, and Behaviour’ theme. This is a collaborative venture with clinical and scientific colleagues within the Department of Psychological Medicine, Cardiff.

In the post-genomic era, aspects of the field of psychiatry are being redefined as a genetic neuroscience. The newly emerging field of Neuropsychiatric Genetics has identified `susceptibility genes’ (eg. Dysbindin, NRG1, COMT and DAOA) associated with schizophrenia and bipolar affective disorder. Although these developments are at an early stage and as yet no genetic tests are available, the identification of such susceptibility genes for these complex polygenic disorders presents the alluring promise of identifying predictive factors, establishing more robust categories of diagnosis, and offering the potential for greater individualisation of treatment.

It has been suggested that they will have a major impact on our understanding of disease pathophysiology, the clinical practice of psychiatry and patient and family understandings of risk, susceptibility, and transmission of these conditions.

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Media and public representation:
Is ‘getting a fair press’ the key issue? Exploring the relationships between genomics, the media and the public

Chair: Alok Jha - Science Correspondent, The Guardian

Discussion-based session led by the Media, Culture and Genomics team from Cesagen:

• Maureen McNeil - Institute of Women's Studies and Cesagen
• Jenny Kitzinger - School of Journalism, Media and Cultural Studies and Cesagen, Cardiff University
• Joan Haran - Cesagen
• Kate O'Riordan - Department of Media and Film, University of Sussex
• Jo Moran-Ellis and Julie Barnett - both from ‘ESRC Attitudes to Genomics Survey’, University of Surrey

This session presents the findings from the Cesagen flagship project, Media, Culture and Genomics (Cardiff University & Lancaster University), and the ESRC Attitudes to Genomics Survey (University of Surrey). The presenters will give a brief overview and then respond to audience questions in a discussion that will be facilitated by Alok Jha, Science Correspondent at The Guardian.

The issue of ‘getting a fair press’ about genomics depends on the assumption that there is only one way to achieve fair or balanced communication between fixed and discrete categories such as ‘genomic scientists’ and ‘the public’. Focusing on cloning as a specific application of genomic science, the presentations will explore the complex relationships between scientists, policymakers and ‘the public’ as they are constructed and represented in a range of mass and niche media genres.

Findings which will be foregrounded in the discussion include:

• the ways in which media representations of cloning have shifted over time
• the role of different interest groups and institutions in shaping those media representations
• the gap between what is imagined about public attitudes towards cloning and science more generally and what ‘the public’ actually report they know, believe and feel about this complex, emerging scientific field.

It will also focus on the dynamic relationship between research about public attitudes to science and the mediation of scientific communication.

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