Abstracts and biographies
Policy, Groups and Populations in a Genomic Era: Perspectives from Philosophy and the Social Sciences
Personal Genomics: the new Reformation?
Thomas Baldwin (University of York)
Abstract & bio TBA
Translating systems biology
Jane Calvert (University of Edinburgh)
Systems biology is a new field of biology that aspires to make sense of the flood of data that has been generated by the genome sequencing projects. Its proponents argue that it is the successor to genomics. This paper explores the potential for the translation of systems biological research to clinical contexts. In doing so it analyses the meanings of ‘translation’ in the context of systemic approaches to health and illness, where the focus moves from the individual gene to the system as a whole. The paper then goes on to consider the implications that this apparently more holistic approach to biology might have for policy and for society.
Jane Calvert is a social scientist and RCUK Academic Fellow at the ESRC Innogen Centre, University of Edinburgh. Jane’s broad area of research is the sociology of the life sciences. She is currently studying the emergence, development and epistemic aspirations of both systems biology and synthetic biology.
Jane Calvert (University of Edinburgh)
Systems biology is a new field of biology that aspires to make sense of the flood of data that has been generated by the genome sequencing projects. Its proponents argue that it is the successor to genomics. This paper explores the potential for the translation of systems biological research to clinical contexts. In doing so it analyses the meanings of ‘translation’ in the context of systemic approaches to health and illness, where the focus moves from the individual gene to the system as a whole. The paper then goes on to consider the implications that this apparently more holistic approach to biology might have for policy and for society.
Jane Calvert is a social scientist and RCUK Academic Fellow at the ESRC Innogen Centre, University of Edinburgh. Jane’s broad area of research is the sociology of the life sciences. She is currently studying the emergence, development and epistemic aspirations of both systems biology and synthetic biology.
When Humans are the Exception: Cross-Species Data Mining
Sabina Leonelli (University of Exeter)
The talk will focus on collection and sharing practices of human data as a special case of the larger biomedical project of gathering data about model organisms. As is well known, the criteria and procedures through which research results are documented and re-used vary considerably depending on the model organism on which research is carried out. I intend to focus on the differences between research on Homo sapiens and other organisms. Basic research on humans is heavily contaminated with materials, instruments and knowledge acquired through experimentation on non-humans. What does that imply for the ways in which cross-species research is classified and distributed? In answering this question, I focus on four issues: types of data, meta-data, materials and nomenclature.
The talk will focus on collection and sharing practices of human data as a special case of the larger biomedical project of gathering data about model organisms. As is well known, the criteria and procedures through which research results are documented and re-used vary considerably depending on the model organism on which research is carried out. I intend to focus on the differences between research on Homo sapiens and other organisms. Basic research on humans is heavily contaminated with materials, instruments and knowledge acquired through experimentation on non-humans. What does that imply for the ways in which cross-species research is classified and distributed? In answering this question, I focus on four issues: types of data, meta-data, materials and nomenclature.
Sabina Leonelli is a research fellow of the ESRC Centre for Genomics and Society (Egenis) based at the University of Exeter and a visiting fellow in the Leverhulme/ESRC project ‘How Well Do ‘Facts’ Travel?’ based at the London School of Economics. She was trained in the history, philosophy and social studies of science in London and Amsterdam. Her current work focuses on the relations between regulatory and classificatory practices within biomedical science, with particular attention to the role played by bioinformatic tools for data sharing.
Informed consent and genetic information: a mixed permission model
Neil Manson (University of Lancaster)
Individual informed consent is central to the regulation and governance of personal genetic information. Such a model of governance poses problems for secondary uses of linked (non-anonymised) data. Here an alternative "mixed permission" model is outlined, one which blends and integrates different methods for granting permission. When combined with a proper understanding of personal information and the scope of information privacy rights, such a model avoids some of the problems faced by the standard consent-based model.
Neil C. Manson is a senior lecturer in the Department of Philosophy, Lancaster University. Prior to coming to Lancaster in 2005 he studied philosophy in London and Oxford and from 1998 to 2005 he held research fellowships in philosophy at King's College Cambridge. His main areas of research are in applied philosophy and in philosophy of mind and psychology, including the ethics of communication and information; informed consent; data protection; the nature and significance of genetic information and genetic knowledge. He is the author (with Onora O’Neill) of Rethinking Informed Consent in Biomedical Ethics (Cambridge University Press 2007) and is currently working on upon various philosophical problems to do with consent, communication, and knowledge in a social context.
Changing behaviour of individuals and populations: nudging, shoving and whistling in the wind
Theresa Marteau (KCL)
This paper will provide an overview of the key models to explain and change human behaviour as a background against which to judge the likely effectiveness and acceptability of a range of interventions including altering environments using regulation at one end, and the provision of personal genomes at the other.
Theresa Marteau is Professor of Health Psychology at King's College, London, Fellow of Hughes Hall, Cambridge and visiting academic at the National Institutes of Health, USA and the University of Cambridge. She is a Fellow of the Academy of Medical Sciences and the Academy of Learned Societies for the Social Sciences. Her research focuses on the emotional, cognitive and behavioural responses to health risk information, organised around two broad themes: Risk Communication and Behaviour; and Informed Choice and Behaviour. The aim of this research is to describe and explain responses as a first step towards evaluating different methods of communicating information to achieve understanding, minimal emotional distress, informed choices and behaviour change. The risk information studied includes biomarkers, particularly genotype. The behaviours studied include screening, smoking, diet and physical activity. She is currently developing a programme of research evaluating the use of incentives to improve population health, from the perspectives of psychology, economics and ethics. This research is funded by grants from MRC, Wellcome Trust, National Institute for Health Research, Cancer Research UK, and the European Union.
The Ethics and Politics of Direct-to-Consumer Genetic Tests
Martin O’Neill (University of Manchester)
"The emergence of direct-to-consumer genetic tests, such as those provided by companies like "23-and-Me" and "deCode Genetics", allowing individuals to purchase "genetic profiles" detailing their susceptibility to a variety of conditions, presents significant ethical challenges, as well as challenges of regulation. My paper addresses a number of these issues, relating to issues of privacy, accuracy and autonomy, paying particular attention to the possible implications for universal healthcare systems operating in societies where there are significant inequalities in the diffusion and quality of individual genetic information."
Martin O'Neill is Hallsworth Research Fellow at the Manchester Centre for Political Theory, in Politics at the University of Manchester. He was previously Research Fellow in Philosophy and Politics at St John's College, Cambridge.
Will Genomic Medicine require New Approaches to Data Protection?
Onora O’Neill (University of Cambridge)
Genome sequencing for individuals could in theory allow for more targeted or personalized treatment of patients, but remains prohibitively expensive. As costs fall and knowledge of genome wide associations rises, it might become clinically useful and affordable to assemble (more) complete information about individual genomic profiles. But would it ethically acceptable to do so? I shall suggest that ethical challenges arise less from the fact that genetic information is assembled, than from the fact that it is searchable, but that there may be acceptable ways of using selected portions of individual genomic profiles.
Baroness O’Neill of Bengarve CBE PBA Hon FRS F Med Sci
Onora O'Neill writes on ethics and political philosophy, with particular interests in questions of international justice, in the philosophy of Immanuel Kant and in bioethics. Her books include Faces of Hunger: An Essay on Poverty, Development and Justice (1986), Constructions of Reason: Exploration of Kant's Practical Philosophy (1989), Towards Justice and Virtue (1996) and Bounds of Justice (2000), Autonomy and Trust in Bioethics (2002) and A Question of Trust (the 2002 Reith Lectures) and Rethinking Informed Consent in Bioethics (jointly with Neil Manson, 2007). She currently works on practical judgement and normativity, on questions of trust and accountability in public life; and on the ethics of communication (including media ethics), while continuing to work on Kant’s philosophy. She was Principal of Newnham from 1992 to 2006, and teaches in the Faculty of Philosophy in Cambridge. She is currently President of the British Academy, chairs the Nuffield Foundation and is Professor of Philosophy in Cambridge. She been a member of and chaired the Nuffield Council on Bioethics and the Human Genetics Advisory Commission. She has worked on a number of reports on bio-medical issues, including recently the Kings Fund Inquiry into the Safety of Maternity Services. She was created a Life Peer in 1999, sits as a crossbencher, served on the House of Lords Select Committees on Stem Cell Research, BBC Charter Review and currently Genomic Medicine.
Family and Kinship in a Genetic Era
Martin Richards (University of Cambridge)
DNA genetics has led to the development of paternity and other tests of relationship and ancestry. Has the existence and use of such tests influenced the ways in which we think about parental and kin relationships? Have some relationships been “geneticised”? While it would be very misleading to suppose that any family relationships can be reduced to shared DNA sequences, I will discuss a number of areas where it seems that notions of “biological truth”, grounded in DNA testing are changing social policy, practices and relationships. These will include children of disputed paternity, donor offspring, child support and aspects of assisted reproduction.
Martin Richards is Emeritus Professor of Family Research in the Centre for Family Research, University of Cambridge. For the past two decades his research has focussed on social aspects of genetic and reproductive technologies – both contemporary and historical. Martin is Vice-Chair of UK Biobank Ethics and Governance Council and a member of the Cambridge NHS Trust Human Tissue Management Committee. Recent co-edited volumes include: S. Day-Sclater et al (eds). Regulating Autonomy. Sex, Reproduction and Family, Hart Publishing, 2009 & O. Corrigan et al (eds). The Limits of Consent. A Socio-Ethical Approach to Human Subject Research in Medicine, Oxford University Press, 2009.
Mobile Identities and Fixed Categories: DNA and the Shifting Politics of Race, Ethnicity and Racism
David Skinner (Anglia Ruskin University)
This paper considers how new genetic knowledge and practice are part of (but do not determine on their own) novel forms of politics around race, ethnicity and racism. The paper uses examples drawn from population genetics, health and policing to examine this new ‘biopolitics’. It will argue that a feature of this politics is that biological knowledge and biological material become the stuff of identity formation and an object of struggle in ways which confound previous assumptions and fault lines. In doing so the paper will highlight two apparently contradictory trends that seem to co-exist with and support each other. The first of these is the way that official, standardised systems of classification and data collection saturate public life and feature in the management of ethnic and racial relations. The second is a growing preoccupation with ethnicity as a personalised process of active identification and an increased interest in the complexity of origins and ancestry. The paper will explore the interplay of (apparently plastic) self identifications and (apparently fixed) official categories of group difference. In charting the ‘practical politics’ (to borrow Bowker and Star’s phrase) of categorisation it will argue that we can chart an emerging regime of truth about race, ethnicity and racism which involves both natural science and social science experts in new kinds of relationship with the public.
David Skinner is Principal Lecturer in Sociology at Anglia Ruskin University, Cambridge. He is co-author of Introductory Sociology, (Palgrave Macmillan 1996 and 2002) and Valuing Technology. Organisations, Culture and Change (Routledge 1999). Together with Paul Rosen in 2001 he edited a special edition of the journal Science as Culture on racialised science and technology. Other publications in this area include ‘Racialised Futures: Biologism and the Changing Politics of Identity’ in Social Studies of Science (2006), ‘Rethinking ‘Race’ and Science: Teaching the Biological and the Social’ in Learning, Teaching and Assessment of ‘Race’ and Ethnicity in the Higher Education Curriculum edited by Malcolm Todd and Max Farrar (2006), ‘Groundhog Day? The Strange Case of Sociology, Science and Race’ in Sociology (2007), and ‘Neither Powerless or Powerful: Theorising the Changing Public Role of Sociology’ in Andrew Pilkington (ed) Race-ing Forward: Transitions in Theorising Race in Education (forthcoming). He is currently co-editing with Katharina Schramm and Richard Rottenburg a collection called Identity Politics after DNA :Re/creating Categories of Difference and Belonging to be published by Berghahn in 2010. His current research looks at the use of categories in the natural and social sciences.
Children as means and ends in large scale genetic research
Garrath Williams (University of Lancaster)
In this paper I consider the often-expressed fear that medical research may use children merely as means, and not respect them as ends in themselves - especially insofar as their consent is not taken as seriously as adults'. My starting point is the idea that to be treated as an end in oneself is to be regarded as - and to act as – a participant in shared endeavours, with large-scale genetic research being a case in point. While consent plays an undoubted role when adults commit themselves to such projects, I argue that it is neither required for all research with adults, nor that it should be our principal concern when we involve our children in shared endeavours. Rather, to involve our children, subject to familiar safeguards, is one way in which they may learn what it is to act as an end in oneself - that is, to cooperate with others on reasonable terms and for worthy ends.
Garrath Williams lectures in philosophy at Lancaster University, UK. In philosophy, he has written on Kant, Hobbes and responsibility, and in political theory, on Hannah Arendt and the role of institutions in liberal societies. He has also written on several topics in applied ethics, including the ethics of genetic databases, research ethics and, most recently, childhood obesity. He is currently completing a book on moral responsibility.
Populations and Individuals: Concerns and Questions from a Public Health Perspective
Ron Zimmern (PHG Foundation)
The purpose of the talk is to reflect on some of the issues that will inform the practice of public health in the genomic era. Central to this task will be the need to reflect on aspects of the relationship between populations and individuals and the extent to which population data can be used to predict individual risk. The other set of themes stem from a need to understand the relationship between governments and individual citizens, and the degree to which it is legitimate for the state to exhort individuals to behave in ways which will lead to better health outcomes. I will set out eight key questions and try to suggest why they may be important for public health practice and policy.
Ron Zimmern is the Execcutive Director of the Foundation for Genomics and Population Health, the successor to the Public Health Genetics Unit which he established in Cambridge in June 1997. He graduated in 1971 following his medical training at Trinity College, Cambridge and the Middlesex Hospital, London. After specialising in neurology he obtained a law degree and entered public health medicine in 1983. He was Director of Public Health for Cambridge and Huntingdon Health Authority from 1991 to 1998. He is also an Associate Lecturer at the University of Cambridge and an Honorary Consultant in Public Health Medicine at Addenbrooke's Hospital. He served for many years as Chairman of the Diagnostic and Screening Panel of the UK’s Health Technology Assessment programme and on the Genetics Commissioning Advisory Group of the Department of Health. He continues to serve on the Steering Group for the National Genetic Testing Network. He has an Honorary Professorship in Public Health at the University of Hong Kong and is a fellow of Hughes Hall in Cambridge. His special interests and expertise, in addition to public health genetics, include strategic planning, the relationship between clinical services and teaching and research, priority setting in the NHS, and the law and ethics of medicine.
Martin Richards (University of Cambridge)
DNA genetics has led to the development of paternity and other tests of relationship and ancestry. Has the existence and use of such tests influenced the ways in which we think about parental and kin relationships? Have some relationships been “geneticised”? While it would be very misleading to suppose that any family relationships can be reduced to shared DNA sequences, I will discuss a number of areas where it seems that notions of “biological truth”, grounded in DNA testing are changing social policy, practices and relationships. These will include children of disputed paternity, donor offspring, child support and aspects of assisted reproduction.
Martin Richards is Emeritus Professor of Family Research in the Centre for Family Research, University of Cambridge. For the past two decades his research has focussed on social aspects of genetic and reproductive technologies – both contemporary and historical. Martin is Vice-Chair of UK Biobank Ethics and Governance Council and a member of the Cambridge NHS Trust Human Tissue Management Committee. Recent co-edited volumes include: S. Day-Sclater et al (eds). Regulating Autonomy. Sex, Reproduction and Family, Hart Publishing, 2009 & O. Corrigan et al (eds). The Limits of Consent. A Socio-Ethical Approach to Human Subject Research in Medicine, Oxford University Press, 2009.
Mobile Identities and Fixed Categories: DNA and the Shifting Politics of Race, Ethnicity and Racism
David Skinner (Anglia Ruskin University)
This paper considers how new genetic knowledge and practice are part of (but do not determine on their own) novel forms of politics around race, ethnicity and racism. The paper uses examples drawn from population genetics, health and policing to examine this new ‘biopolitics’. It will argue that a feature of this politics is that biological knowledge and biological material become the stuff of identity formation and an object of struggle in ways which confound previous assumptions and fault lines. In doing so the paper will highlight two apparently contradictory trends that seem to co-exist with and support each other. The first of these is the way that official, standardised systems of classification and data collection saturate public life and feature in the management of ethnic and racial relations. The second is a growing preoccupation with ethnicity as a personalised process of active identification and an increased interest in the complexity of origins and ancestry. The paper will explore the interplay of (apparently plastic) self identifications and (apparently fixed) official categories of group difference. In charting the ‘practical politics’ (to borrow Bowker and Star’s phrase) of categorisation it will argue that we can chart an emerging regime of truth about race, ethnicity and racism which involves both natural science and social science experts in new kinds of relationship with the public.
David Skinner is Principal Lecturer in Sociology at Anglia Ruskin University, Cambridge. He is co-author of Introductory Sociology, (Palgrave Macmillan 1996 and 2002) and Valuing Technology. Organisations, Culture and Change (Routledge 1999). Together with Paul Rosen in 2001 he edited a special edition of the journal Science as Culture on racialised science and technology. Other publications in this area include ‘Racialised Futures: Biologism and the Changing Politics of Identity’ in Social Studies of Science (2006), ‘Rethinking ‘Race’ and Science: Teaching the Biological and the Social’ in Learning, Teaching and Assessment of ‘Race’ and Ethnicity in the Higher Education Curriculum edited by Malcolm Todd and Max Farrar (2006), ‘Groundhog Day? The Strange Case of Sociology, Science and Race’ in Sociology (2007), and ‘Neither Powerless or Powerful: Theorising the Changing Public Role of Sociology’ in Andrew Pilkington (ed) Race-ing Forward: Transitions in Theorising Race in Education (forthcoming). He is currently co-editing with Katharina Schramm and Richard Rottenburg a collection called Identity Politics after DNA :Re/creating Categories of Difference and Belonging to be published by Berghahn in 2010. His current research looks at the use of categories in the natural and social sciences.
Children as means and ends in large scale genetic research
Garrath Williams (University of Lancaster)
In this paper I consider the often-expressed fear that medical research may use children merely as means, and not respect them as ends in themselves - especially insofar as their consent is not taken as seriously as adults'. My starting point is the idea that to be treated as an end in oneself is to be regarded as - and to act as – a participant in shared endeavours, with large-scale genetic research being a case in point. While consent plays an undoubted role when adults commit themselves to such projects, I argue that it is neither required for all research with adults, nor that it should be our principal concern when we involve our children in shared endeavours. Rather, to involve our children, subject to familiar safeguards, is one way in which they may learn what it is to act as an end in oneself - that is, to cooperate with others on reasonable terms and for worthy ends.
Garrath Williams lectures in philosophy at Lancaster University, UK. In philosophy, he has written on Kant, Hobbes and responsibility, and in political theory, on Hannah Arendt and the role of institutions in liberal societies. He has also written on several topics in applied ethics, including the ethics of genetic databases, research ethics and, most recently, childhood obesity. He is currently completing a book on moral responsibility.
Populations and Individuals: Concerns and Questions from a Public Health Perspective
Ron Zimmern (PHG Foundation)
The purpose of the talk is to reflect on some of the issues that will inform the practice of public health in the genomic era. Central to this task will be the need to reflect on aspects of the relationship between populations and individuals and the extent to which population data can be used to predict individual risk. The other set of themes stem from a need to understand the relationship between governments and individual citizens, and the degree to which it is legitimate for the state to exhort individuals to behave in ways which will lead to better health outcomes. I will set out eight key questions and try to suggest why they may be important for public health practice and policy.
Ron Zimmern is the Execcutive Director of the Foundation for Genomics and Population Health, the successor to the Public Health Genetics Unit which he established in Cambridge in June 1997. He graduated in 1971 following his medical training at Trinity College, Cambridge and the Middlesex Hospital, London. After specialising in neurology he obtained a law degree and entered public health medicine in 1983. He was Director of Public Health for Cambridge and Huntingdon Health Authority from 1991 to 1998. He is also an Associate Lecturer at the University of Cambridge and an Honorary Consultant in Public Health Medicine at Addenbrooke's Hospital. He served for many years as Chairman of the Diagnostic and Screening Panel of the UK’s Health Technology Assessment programme and on the Genetics Commissioning Advisory Group of the Department of Health. He continues to serve on the Steering Group for the National Genetic Testing Network. He has an Honorary Professorship in Public Health at the University of Hong Kong and is a fellow of Hughes Hall in Cambridge. His special interests and expertise, in addition to public health genetics, include strategic planning, the relationship between clinical services and teaching and research, priority setting in the NHS, and the law and ethics of medicine.
