/Conferenc by CSG Centre for Society and the Life Sciences

Genomics & Society towards a socially robust science?

INTERNATIONAL CONFERENCE

Renaissance Hotel Amsterdam, the Netherlands 20-21 April 2006

Centre for Society and Genomics PO Box 9010 6500 GL Nijmegen The Netherlands Tel.: + 31 (0) 24 365 27 33 info@society-genomics.nl www.society-genomics.nl

ESRC Centre for Economic and Social Aspects of Genomics (CESAGen) Institute for Advanced Studies County South Lancaster University Lancaster LA1 4YD United Kingdom + 44 (0) 1524 510842 p.burton@lancaster.ac.uk www.cesagen.lancs.ac.uk

Design Hannie van den Bergh (www.studio-hb.nl) / Photo frontpage DigiDaan

Genomics & Society towards a socially robust science?

TABLE OF CONTENTS Welcome Conference organising committee Map of Amsterdam Venues & events Plenary programme, 20th April Plenary programme, 21th April Plenary speaker short biographies Lunch programme Parallel session I Parallel session II Parallel session III Parallel session IV Parallel session V Poster presentations Parallel programme, author index

5 6 7 8 10 12 15 22 23 33 44 54 64 74 81

About CSG The Centre for Society and Genomics (CSG) combines social science and ethics research with societal interaction. The Centre develops innovative ways of defining the future genomics agenda. CSG’s mission is to be a leading centre for understanding and stimulating the interaction between society and genomics, both nationally and internationally. To fulfil its mission, CSG establishes a societal agenda for genomics in the Netherlands, involving major research groups and programmes of the NGI Centres of Excellence. CSG adds critical mass to societal research on genomics through relevant and visible research projects on key societal issues as well as through methodology development. CSG’s researchers spend 25% of their time on societal interaction and communication. The Centre develops and supports educational opportunities on graduate, postgraduate and PhD levels. It also contributes to public interaction and debate with various non-academic audiences and stakeholders. CSG builds an infrastructure for international collaboration through international networks, and research programmes. CSG’s programme rests on three pillars: national research, international research projects and societal interaction and dialogue. CSG funds a total of 20 research projects. These projects are carried out at different universities in the Netherlands. CSG has projects in the health, nutrition and environmental domain. CSG is one of the five national Centres of Excellence, set up by the Netherlands Genomics Initiative (NGI). NGI provides CSG’s main funding. www.society-genomics.nl About CESAGen The ESRC Centre for Economic and Social Aspects of Genomics (CESAGen) is a collaboration between the Universities of Lancaster and Cardiff. CESAGen is a multidisciplinary research centre in which the social sciences and humanities work closely with natural and medical sciences to address the social, economic and policy aspects of developments in genomics. In the light of considerable national and international attention to these issues, and increased public debate, CESAGen is undertaking a programme of public engagement as well as feeding its research into policy circles. The challenge is to define and successfully pursue a new research agenda that is responsive both to the rapid changes in genomic and genetic science and technology, and to the rapid cultural changes which affect the present and future development of these and other technologies. CESAGen’s research agenda is organised around six themes, each of which has at least one Flagship Project associated with it. In addition cross-cutting themes of globalisation, public engagement, health, and environment are integrated into all projects. The Centre is involved in numerous research projects and collaborations with other institutions both nationally and internationally. Details of all CESAGen’s projects can be found on the website. CESAGen is funded by the UK Economic and Social Research Council (ESRC) as part of the Genomics Network. The objective of the network as a whole is to undertake a systematic, critical and technically informed exploration of the past, present and future economic and social trajectory of genomics. www.cesagen.lancs.ac.uk

WELCOME Dear Colleague, On behalf of the two organising parties – CSG and CESAGen – we welcome you in Amsterdam, capital city of the Netherlands. As in previous years, we have created what we hope will be an interesting and stimulating programme on ‘Genomics and Society’. The conference includes five plenary sessions with international scholars and no less than 25 parallel sessions. Moreover, this year’s programme also includes performances by Theatre Adhoc, both on the evening before the conference as well as during the conference. We thus hope to stimulate debate on the role, meaning and method of communication, imagination and public engagement, topics that will also be addressed in the plenary and parallel sessions. This is the third year that CESAGen, together with CSG, organises this international conference on Genomics & Society. The number of abstracts that we received and the number of conference delegates is still growing. We belief this is a positive sign: ELSA-genomics is consolidating into a real research community. By organising this conference, we hope to strengthen this community both now and in the future. Hub Zwart, director CSG Annemiek Nelis, deputy director CSG

CONFERENCE ORGANISING COMMITTEE Organising Committee Maria Cantore CSG (Conference secretary) Jeanine Lagendijk CSG (Communication) Frans van Dam CSG (Communication) Ellis Mulder NGI, CSG Colin Reddy NGI, CSG Annemiek Nelis CSG (Coordination) Programme committee Martina Cornel CSG, Vrije Universiteit Amsterdam Mairi Levitt CESAGen, University of Lancaster Jan Gutteling CSG, University of Twente Hub Zwart CSG, Radboud University Nijmegen Guido de Wert CSG, Maastricht University Annemiek Nelis CSG, Radboud University Nijmegen Aad Tibben CSG, Leiden University

All correspondence should be directed to the Conference Secretary Maria Cantore Centre for Society and Genomics PO box 9010 6500 GL Nijmegen The Netherlands + 31 (0)24 3652733 E-Mail: Cantore@society-genomics.nl www.society-genomics.nl

MAP OF AMSTERDAM

VENUES & EVENTS Wednesday, 19th April, 20.00 Theatre Adhoc Venue: De Balie A performance by Theatre Adhoc on the ‘the visualisation of invisible dimensions‘, will open the conference ‘genomics & society: towards a socially robust science?’ on Wednesday night April 19. Jan van den Berg and Olga Beemster of Adhoc play a ‘theatrical hypertext’ about the visualisation of invisible dimensions: genes & proteins, bits & bytes, ceta’s & tera’s, nano's & neutrino's … humor & tragedy of bears and bison’s, flies and cathedrals, the art of nose picking, ‘in the wings of the crown of the skull’ and the largest camera in the world. Theatre for natural scientists, philosophers and poets and all other inquisitive persons. Professor Bartha Knoppers, a renowned social scientist, from the University of Quebec will be part of the performance. Adhoc Theatre acts as a research institute that presents its results to the public through theatre documentaries. In these performances the makers report on their voyage of discovery to invisible dimensions. Curious worlds, where scientific developments take place, literally and figuratively, withdrawn from our observation. More than enough reason to, occasionally, visit these worlds. Out of sheer curiosity or for the sake of the visualisation of invisible dimensions. In many to these laboratories our near future takes shape. And … reality is too interesting to leave it to the realists. The performance starts at 20.00 hours at debating centre ‘de Balie’, in the vicinity of Leidse Plein. There will be drinks afterwards. How to get there From the direction of Central Station (or Renaissance Hotel) take tramline 1, 2 or 5 to Leidse Plein. At the Leidse Plein stop, turn around and walk across the square into the direction of ‘City Cinema’. De Balie is located opposite of the Cinema. (Kleine Gartmanplantsoen 10, tel: 020-5535151)

Thursday 20th – Friday 21st April Conference and second performance by Theatre Adhoc Venue: Renaissance Hotel The conference takes place in the Renaissance Hotel, in the very heart of old Amsterdam between Central Station and Dam Square. The hotel is next to one of Amsterdam’s canals and is within walking distance of Anne Frank's House, the Royal Palace and the famous diamond factories. The conference hall is within the Koepelchurch Convention Centre, connected to the hotel via an underground passageway. The facility is one of Netherlands’s most historical conference venues. (Kattengat 1 tel.: 020 6212223). The Renaissance Hotel is also the location where Theatre Adhoc performs for the participants throughout the conference. In small groups of two persons at a time, one can visit Adhoc's performance 'Blueprint'. This 20 minute performance was specially created for the conference and promises the visitor a sensory journey through their thoughts and perceptions: a representation of the invisible dimensions in which contemporary science develops. Reservation for ‘Blueprint’ at the registration desk (20th April, 8.30 – 9.30)

Thursday 20th April, 20.00 Conference Dinner 20th – 23rd April, public event Venue: Nemo Science Centre On Thursday, 20th April, you can enjoy the conference dinner at NEMO. NEMO is the largest science centre in The Netherlands. Here you can discover the wonderful world of science and technology in a playful and entertaining way. The Amsterdam-based NEMO covers a wide range of scientific and technological subjects. Parallel to the conference from 20 to 23 April, Nemo, CSG and other genomics centres of excellence organise a public event on genomics in Nemo. Visitors can participate in short DNA-experiments or spend 2 hours in a real DNA-lab. They can witness an ‘It’s Amazing’ demo, a wake-up lecture for children and a lecture for adults. If you show your conference badge at the entrance you will have free entrance. How to get to ‘NEMO’ The best way to get to NEMO is on foot (20 minutes). From the Renaissance Hotel, it is a 5 minutes walk to Central Station and past the bus and tram platform in the direction of the Tourist Information (right hand side). Using the signposted (purple) walk Central Station - Leidseplein via Oosterdok directs you straight to NEMO (Oosterdok 2, tel: 0900 - 9191100).

PLENARY PROGRAMME THURSDAY, 20th APRIL 2006 Plenary 1 Lecture Title Institution

9.30 – 11.15 Bartha Knoppers From Biobanks to Public Health Centre de Recherche en Droit Public, Université de Montréal, Canada

While biobanks and research involving gene-hunting in populations received increasing attention by research ethics boards and commissions, in the last decade, the advent of international and national longitudinal studies on large, heterogeneous cohorts is not specifically addressed in current ethical frameworks. Equally absent from their purview is consideration of genomic databases as distinct from genetic disease registries etc.. The former are of particular importance, as our understanding of the role of normal genetic variation in common complex diseases, to say nothing of genetic susceptibility, increases. Indeed, genetic susceptibility may be of importance for research into infectious/communicable diseases as well. If the public interest (as opposed to individual rights) prevails, genomic databases could lead to better surveillance programmes. What are the implications of these new challenges for collaboration and exchange between disciplines?

Lecture Title Institution

Bas Defize Developmental biology and stem cells Hubrecht Laboratory, Netherlands Institute for Developmental Biology, Utrecht

The current and especially future impact of modern biomedical research on society seems enormous. The sequencing of the entire human genome, the advent of the –omics techniques (eg genomics and proteomics), breakthroughs in human stem cell research, cloning and genetic manipulation have raised optimism as well as major concern amongst not just the general public, but amongst scientists as well. How valid are the claims of the scientists (especially those with a commercial interest) involved in the research and how justified are the sentiments surrounding these new techniques? Are we really on the verge of a new era in medicine, in which we are able, on a genetic basis to predict and/or change the quality of life of a human being? Will stem cells provide an endless source of human spare parts? Will we conquer old age as the “anti-ageing” adepts predict? These issues will be addressed using examples taken from current research in developmental biology and stem cells.

Plenary 2 Speakers

Chair

16.15 – 17.45 Ruth Chadwick George Gaskell Helga Nowotny Annemiek Nelis

Interdisciplinarity and ELSA Research - Round Table ELSA research has brought together disciplines that for a long time had little or no contact or intervention with one another. Studying the ‘Ethical, Legal and Social Aspects (ELSA) of genomics, such is often claimed, has fostered new collaborations between social sciences and humanities and between the lifesciences and social sciences. The current conference, one may say, is an interesting example of this dynamic. Ethics, psychology, sociology and law have brought along different methods and different theories to the study of “the new genetics and genomics”. What has been the theoretical and methodological impact of bringing together under the broad umbrella of ELSA-research such a large variety of disciplines? This is the question that will be addressed in this session. Are we an interdisciplinary field or is ELSA a field (if it can be called a field at all) of disciplinary scholars that happen to study the same object? Have different disciplines (ethics, social sciences, legal studies, economics but also the life-sciences etc) developed a methodological and theoretical framework that is specific to ELSA-research? Or are genetics and genomics just another topic to be studied? Have the different disciplines learned or taken over anything from other disciplines? Or is there still little convergence going on? And is (more) convergence desirable? If so, how should this be organized or embedded in current research practices?

PLENARY PROGRAMME FRIDAY, 21st APRIL 2006 Plenary 3a

10.30-12.00

Speakers

Ulrike Felt Martijn Katan Michiel Korthals Fons Werrij

Chair

Genomics and the boundary zone between food and health - Round Table [Genomics:] Will nutrigenomics in due course indeed deliver new services and products against obesity and other vulnerabilities? If so, what kind of new services and products? [Responsibilities:] Will genomics, by delivering healthy food stuffs, shift responsibility for health from general practioners to supermarkets? Or maybe to new agencies? [Consumers:] What will be the response of consumers? Will people in eating have to take account of their genes? Will people indeed do (want to) heed of their health in eating? How can be assured that screening agencies are reliable? Will confounding the boundaries between food and drug confuse the public and how can this be prevented? Will it lead to medicalisation? [Regulation:] What kind of regulatory regime can give consumers reliable information on new genomics food products? (According to data presented at the International Food Products Exhibition (SIAL 2004) over 50% of new food products are claimed to enhance health). [Again, Genomics:] In what way will the food and nutrition sciences and medical sciences interact in delivering personalized dietary advice? Which one will take the lead? What will be the role of industry? These are some of the questions that we will tackle in this session on the gray zone between food and health that more and more is mapped by (nutri) genomics. Genomics is the study of the interaction of genes and their environment. Nutrigenomics is the study of how nutrients and genes interact and how genetic variations can cause people to respond differently to food nutrients. Nutrigenomics is still in its infancy but scientists already predict nutrigenomics will revolutionize our understanding how food is consumed and processed and how personalized diets can be tailored to genetic make up. Under what conditions (ethical, regulatory) will personalized dietary advice and food be desirable and acceptable? Which groups of consumers are in particular to be addressed? What will be the role of governments and insurance companies? New interests groups will emerge and try to gain easy success in this field. How should the responsible scientists react? What should governments do? These questions require new research programmes in which food and nutritional sciences, the medical sciences and the ethical and legislatory sciences cooperate. What types of new paradigmshifts are necessary in these sciences to cooperate fruitfully? What are the most pressing research questions? Are the concepts of informed food choice, consumer sovereignty, solidarity still viable vis-Ă -vis these new developments? How can these new research programmes engage the public, and how can the needs and preferences of the public be addressed?

Plenary 3b Speakers

Chair

10.30-12.00 Angela Brand Anne Cambon-Thomsen Jean-Jacques Cassiman Martina Cornel Johan Mackenbach

Genomics & the Future of Public Health - Round Table Genomics research entails new challenges for social and ethical research as well as for public debate. Genomics forces us to reconsider our agendaâ&#x20AC;&#x2122;s. It calls for a prospective (rather than retrospective), an interdisciplinary (rather than mono-disciplinary) and a macro-level oriented (rather than micro-level oriented) approach. Notably, genomics raises a whole set of issues on the level of public health. Beyond the traditional focus on issues such as informed consent, genomics forces us to address more or less novel issues, connected with the use (acquisition, storage, dissemination, application, etc.) of genetic information. Genomics will expose societies to new types of information concerning various determinants of health (genetic, life style, environmental) and will thus open up new possibilities and avenues for prevention and health promotion. What impact will it have on public health research, policies and practices, and how are we to assess and analyse it? Will it redefine interests and responsibilities (of individuals, governments, employers and others)? How are we to develop the social, ethical, legal and health systems related infrastructures to â&#x20AC;&#x153;domesticateâ&#x20AC;? and use these innovations in a responsible manner? Will they lead to empowerment of individuals and solidarity or rather to scenarios of division and exclusion? How will we balance conflicts between autonomy and solidarity? Concrete issues include bio-banking, screening, assessment of clinical utility, management of genetic information, science communication, policy-making and health literacy. Are the usual paradigms of medical ethics and biolaw (often individual based) valid and adequate for population-based applications of genomics?

Plenary 4 Lecture Title Institution

16.30 â&#x20AC;&#x201C; 17.45 Margit Sutrop The nature and role of trust in the context of human genetic databases University of Tartu, Estonia

In her lecture Margit Sutrop will explore the nature and role of trust in the context of human genetic databases. What is trust? Why is it especially important when dealing with the management of human genetic databases. How can trust be furthered?

Lecture Title Institution

Han Somsen Biobanks and governmental regimes Tilburg Institute of Law, Technology, and Society at Tilburg University Chair in Biotechnology and Law, Centre of Environmental Law, University of Amsterdam

In the wake of the accelerated establishment of biobanks across Europe and the world, this paper first seeks to position the scientific and commercial importance of biobanks. It will focus on tensions between requirements of access to genetic information by different actors for different purposes, and requirements of privacy. The continued viability of the traditional requirement of prior informed consent will be examined. The most important international and European regimes will be critically analysed with a view to distilling principles that should guide policy-makers in the design of biobanks.

PLENARY SPEAKERS’ SHORT BIOGRAPHIES Angela Brand Angela Brand is paediatrician, Master of Public Health (Johns Hopkins, USA), specialist in Public Health Medicine and an expert on Public Health Genomics (PHG). Professor for Social Medicine/Public Health at the University of Applied Sciences in Bielefeld with Joint Appointment at the School of Public Health at the University of Bremen, Germany. Director of the German Center for Public Health Genomics. Brand is Associated partner of the project PHG within the German National Genome Research Network (NGFN) and speaker and associated partner in the 2006-2008 EU-funded project PHGEN (Public Health Genomics European Network) (www.phgen.nrw.de). She is an expert for the German Parliament on PHG and consultant for the European Agency for Reconstruction, expert for the DECHEMA on Biotechnology and expert for the OECD on genetic testing. Prof. Brand is president of the section PHG within the European Public Health Association (EUPHA), speaker of the section PHG within the German Society for Social Medicine and Prevention (DGSMP) and speaker of the section “Public Health Ethics“ within the German Academy of Ethics in Medicine (AEM). Anne Cambon-Thomsen Anne Cambon-Thomsen is Director of Research in CNRS. She obtained MD, masters in Human biology and degree in Health Ethics in Toulouse. She presently leads a multidisciplinary team on “Genomics, Health, Society”, in an Inserm Unit of Epidemiology and public health, at the Faculty of Medicine of Toulouse, and the “Genetics and Society” platform of Toulouse Genopole. Her topics of research encompass human immunogenetics, transplantation, genetic epidemiology, population health genomics and ethics in genetics. She is member of the Advisory Committee for the Genomics and Biotechnology for Health Priority of the EU 6 FP and of the Advisory scientific board of Genome Quebec. She was rapporteur of an EU expert group on ethical, legal and social aspects of genetic testing in 2004. She has been member of CCNE (French national advisory bioethics committee) and is member of the European Group of ethics. Jean-Jacques Cassiman Jean-Jacques Cassiman was born on April 25, 1943 in Brussels. After his training as an MD with specialty in Paediatrics, he spent 5 years at the University of Stanford, CA. Since 1984 he is full Professor of Human Genetics and since 1999, division head of the Centre for Human Genetics in Leuven, Belgium. He is director of the laboratory for forensic genetics and molecular archaeology and coordinator of EU projects on Cystic Fibrosis. From 1993-99 he was secretary-general of the European Society of Human Genetics and from 2002 on he is liaison officer for the ESHG to the International Federation of Human Genetics Societies. He is secretary of EPPOSI (European Platform for Patient Organisations, Science and Industry) and board member of VIWTA (Flemish Institute for Science and Technological aspects of the Flemish

Parliament). He is coordinator of the EU-funded network of Excellence EUROGENTEST, which aims at harmonizing and improving the quality of genetic testing in the EU. Ruth Chadwick Ruth Chadwick is Director of the ESRC (Economic and Social Sciences Research Council) Centre for Economic and Social Aspects of Genomics (CESAGen), Cardiff University, UK. She has co-ordinated a number of projects funded by the European Commission, including the EUROSCREEN projects (1994-6; 1996-9) and co-edits the journal Bioethics and the online journal Genomics, Society and Policy. She is Chair of the Human Genome Organisation Ethics Committee and a member of the Standing Committee on Ethics of the Canadian Institutes for Health Research; the Medical Research Council Steering Committee on DNA Banking; the Advisory Committee on Novel Foods and Processes (ACNFP); and the Bioscience for Society Strategy Panel of the Biotechnology and Biological Sciences Research Council. She was editor-in-chief of the award winning Encyclopaedia of Applied Ethics (1998). She is a Fellow of the Hastings Center, New York. In 2005 she was the winner of the World Technology Network Award for Ethics Martina Cornel Martina Cornel (1959) is professor of community genetics at the VU University Medical Centre, Amsterdam. She is a physician and epidemiologist and worked as a birth defects registry leader. Many of her scientific publications concern the epidemiology and prevention of congenital anomalies. In her current position she is involved in implementation and translational aspects of medical genetics and genomics, for instance as member of the Core Group of the CSG, as chair of the working party on preconceptional care and as chair of the committee on societal aspects of genomics of the centre of excellence Centre for Medical Systems Biology, Leiden. While knowledge on genetics and genomics is generated at high speed, health care is not prepared to implement most of this new knowledge. Her focus is on education of health care workers, information to the public and pilot studies in areas where public health and genetics meet. Bas Defize Bas Defize (1955) studied biology at the University of Utrecht and did his PhD research at the Hubrecht laboratory, Netherlands Institute for Developmental Biology, also in Utrecht. He received his degree in 1988 on a thesis entitled â&#x20AC;&#x153; Activation of the Human epidermal growth factor receptorâ&#x20AC;?. After two years of postdoctoral research carried out in the lab of Dr. Michael Karin at the University of California in San Diego, he was appointed as group-leader at the Hubrecht laboratory. Here, he has been studying molecular mechanisms involved in cell-cell communication and migratory behaviour during the embryogenesis of vertebrates, using embryonal stem- and carcinoma cells as model systems. In these studies, the focus is on the ways in which the environment of a cell influences its genetic program. He is also the managing director of the

Utrecht graduate school for developmental biology and has recently acquired responsibility for the educational programme of the Hubrecht laboratory. Ulrike Felt Ulrike Felt finished a Ph.D. in theoretical physics at the University of Vienna in 1983. She then started working in the field of history of science and later moved to the field of social studies of science. Until 1988 she staid at the European Center for High Energy Physics (CERN) in Geneva, where she was member in an international team of historians. In 1988 Felt came back to Vienna, where she started working at the newly founded Institute for Philosophy of Science and Social Studies of Science. She has run numerous nationally and internationally funded research projects in the fields of public understanding and uptake of science and technology and science and technology policy. Felt has been a visiting professor at a number of institutions and also been member of the council of the European Association for the Study of Science and Technology (EASST) until 1999. She currently is editor of Science, Technology and Human Values.

Guy Ackerman

George Gaskell George Gaskell studied psychology at University College London and is currently professor of Social Psychology and director of the Methodology Institute at the London School of Economics (LSE). At LSE, he is also Associate Director of the BIOS Research Centre for the study of Bioscience, Biomedicine, Biotechnology and Society and involved in the Social Psychology Institute. Gaskell is Vice Chair of the Advisory Committee on Science and Society in the 6th Framework Programme European Commission. On behalf of DG Research of the European Commission, he chairs the Expert Group on Social Values, Science and Technology. He is a member of the international advisory board of the Program in Applied Ethics and Biotechnology at the University of Toronto Joint Centre for Bioethics and of the European Federation of Biotechnology, Task Group on Public Perceptions of Biotechnology. His particular research interests are expert and lay representations of risk, societal impacts of genomics and science, technology and the public, as well as economic psychology, trust, attitudes and social representations. In his field of interest, George Gaskell published numerous scientific articles, books, book chapters and reports. Martijn Katan Martijn Katan (1946) graduated cum laude in chemistry and biochemistry at the Amsterdam University in 1972. He received a Ph.D. in Molecular Biology from Amsterdam University in 1977. Till 2005 he has worked on nutrition and health, focusing on diet and risk factors for cardiovascular disease at Wageningen University. As of January 1st 2006 he works at the Vrije Universiteit in Amsterdam. From 1985 - 1998 Martijn Katan was professor of Human Nutrition at Nijmegen University for the Nutrition Foundation, and from 1986 - 1998

also Associate Professor of Human Nutrition at Wageningen Agricultural University. Till 2005 he was Scientific Director of the Nutrition and Health Programme of Wageningen Centre for Food Sciences, and Professor at the Division of Human Nutrition of Wageningen University. In 2003 he received the European Nutrition Award. He is a member of the Dutch Health Council, a governmental advisory body and of the Royal Netherlands Academy of Sciences. In 2005 the Royal Netherlands Academy of Sciences appointed him as Academy Professor. Bartha Maria Knoppers Bartha Maria Knoppers, Phd. has a Canada Research Chair in Law and Medicine and Chaire d’excellence Pierre Fermat (France). She is professor at the Faculté de Droit, Université de Montréal and Senior Researcher at the Centre for Public Law (C.R.D.P.). Knoppers is former Chair of the International Ethics Committee of the Human Genome Organisation (HUGO), (1996-2004). She was a member of the International Bioethics Committee of the United Nations, Educational, Scientific and Cultural Organization (UNESCO) which drafted the Universal Declaration on the Human Genome and Human Rights (1993-1997). She is also Co-Founder of the International Institute of Research in Ethics and Biomedicine (IIREB). In the year 2000, she was named to the Board of Genome Canada, to the Executive of the Canadian StemCell Network and in 2003, Chair of the Ethics Working Party of the International Stem Cell Forum. In October 2001, Knoppers received a Doctor of Laws Honoris Causa from the University of Waterloo and in December 2002 received a Doctor of Medicine Honoris Causa from Université de Paris V (René Descartes). In February 2002, she was elected Fellow of the American Association for the Advancement of Science and in May 2002 was named Officer of the Order of Canada. She founded the international Public Population Project in Genomics (P3G) in 2003. In that same year, she was elected Fellow of The Hastings Center (Bioethics), New York, member of the International Ethics Committee of WADA and in April 2005, was elected Fellow of the Canadian Academy of Health Sciences (CAHS). She has produced 182 articles and supervised 6 Doctorate theses and 23 Master theses. Michiel Korthals Michiel Korthals (1949) is Professor and Chair of Applied Philosophy at Wageningen University. He studied Philosophy, Sociology, German and Anthropology at the University of Amsterdam and the Karl Ruprecht Universität in Heidelberg. His academic interests include deliberative theories, American Pragmatism and bioethics, and ethical problems concerning food production, nature and environmental issues. Korthals is an ethics advisor to several national and international organisations (Dutch Ministry, Genome Canada, FAO) and has been invited by internationally well-known universities to give lectures on Biotechnology, Food and Ethics (like Michigan State University, Purdue University, New York University, Missouri University, Lancaster University, Princeton, Guelph University and Hebrew University, Israel). His books include: Filosofie en intersubjectiviteit [Philosophy and Intersubjectivity, 1983],

Duurzaamheid en democratie [Sustainability and Democracy, 1995], Tussen voeding en medicijn [Between Food and Medicine, 2001], Voor het eten (2002); Before Dinner: Philosophy and Ethics of Food (Springer, 2004). He is editor of Wetenschapsleer [Philosophy of Science, 1989] and co-editor of Philosophy of Development (1996) and Pragmatist Ethics for a Technological Culture (2002). Korthals is member of the editorial board of leading journals and scientific committees, editor-in-chief of the International Library of Environmental, Agricultural and Food Ethics. Johan Mackenbach Professor Johan Mackenbach received a Medical Doctorâ&#x20AC;&#x2122;s degree and a PhD in Public Health from Erasmus University in Rotterdam, the Netherlands. He is also a registered epidemiologist and public health physician. Mackenbach joined the Department of Public Health at Erasmus University as a lecturer in 1984, becoming Professor of Determinants of Population Health in 1991, and Professor of Public Health and Department Chair in 2001. His research experience and interests are in the fields of social epidemiology, medical demography, and health services research. He chairs several scientific assessment committees of the Netherlands' Organisation for the Advancement of Research and the Netherlands Medical and Health Research Council. He is a member of the Health Research Council and the Health Council of the Netherlands. Professor Mackenbach is coordinator of 2 EU Concerted Actions, and Editor-in-chief of the European Journal of Public Health. Johan Mackenbach's publications include more than 100 articles in Dutch language, refereed journals, 90 (contributions to) books and more than 250 articles in international, refereed journals. Annemiek Nelis Annemiek Nelis is deputy director of the Centre for Society and Genomics (CSG) and researcher in the field of the sociology of science and technology (STS). She is responsible for the management of the research projects of CSG and for the internal organisation of CSG. Her research projects focus on the role of patient organisations in the development of new genetic technnologies and on normative questions in research practices. Her research is financed by NWO and ZON-MW. Annemiek Nelis received her PhD in 1998. Her thesis deals with the development of clinical genetics and DNA-diagnostics in the Netherlands. After receiving her PhD she became a research fellow at the Anglia Polytechnic University in Cambridge (UK). In the past five years she worked as a lecturer at the Vrije Universiteit (VU) and the University of Amsterdam.

Helga Nowotny Helga Nowotny is Professor em. of Social Studies of Science at the Swiss Federal Institute of Technology (ETH Zurich) and currently VicePresident of the Scientific Council of the ERC. Until recently she was Chair of the European Research Advisory Board (EURAB) to the European Commission, a function she relinquished to devote more time to the ERC. She is based in Vienna as a Fellow at Wissenschaftszentrum Wien. Born in Vienna (Austria). Helga Nowotny has been Professor of Social Studies of Science at ETH Zurich and Director of Collegium Helveticum until 2002. She has been Founding Director of “Society in Science: the Branco Weiss Fellowship” based at ETH Zurich. She has a doctorate in law from the University of Vienna and a Ph.D. in sociology from Columbia University, New York. She has held teaching and research positions in Vienna, Cambridge, Bielefeld, Berlin and Paris and has been a Fellow at the Wissenschaftskolleg zu Berlin. From 1974-1986 she has been Executive and Founding Director of the European Centre in Vienna and for seven years Chairperson of the Standing Committee for the Social Sciences of the European Science Foundation. From 1987 she was Professor of Social Studies of Science at the University of Vienna and Permanent Fellow of Collegium Budapest/Institute for Advanced Study before moving to ETH Zurich. Helga Nowotny is a member of the Scientific or Advisory Board of many scientific and policy-oriented institutions in Europe and Member of the Academia Europaea. She was awarded the Bernal Prize 2003 by the Society for Social Studies of Science, and is prize-winner of the “Arthur Burkhardt Preis für Wissenschaftsförderung 2002. She has authored, coauthored or edited more than 30 books and published widely in social studies of science and technology and on the relationship between science and society. Han Somsen Professor Han Somsen (1964) researches and teaches at the University of Amsterdam, where he holds the chair in biotechnology and law. Since January 2006, he alkso holds the chair in regulation of technology, at Tilburg University. He is associate fellow at the School of Law of Warwick University. He has many years of academic experience, which he gained at the University of Hull (UK), the European University Institute (Italy), Warwick University (UK) and Nijmegen University (NL). He is a prolific researcher, and currently directs a research group focusing on the regulation of biotechnology. Professor Somsen specialises in issues of international, European and domestic biotechnology law, as well as EC law, with a particular interest in EC environmental law. He is member of the International Law Association Committee on International Law and Biotechnology. He is also an innovative teacher, with a devotion to education and teaching. Finally, he is an experienced editor for Oxford University Press, and author of numerous articles in books and international journals. Han Somsen was awarded a Pioneering-subsidy by the Netherlands Organization for Scientific Research (NWO). His group currently consists of three PhD-students, a senior and an assistant researcher. 20

Margit Sutrop Margit Sutrop is Professor of Practical Philosophy of the University of Tartu and Head of the Centre for Ethics which she helped to establish in 2001. Before becoming an elected professor in 2000, she studied and worked for eight years in Germany, University of Constance. Her thesis "Fiction and Imagination - the Anthropological Function of Literature" was published by Mentis in 2000. Current research interests include early modern and contemporary moral philosophy and bioethics. She is a member of Academia Europaea (London). Fons Werrij Fons Werrij studied biology (chemical cytology) at the Catholic University of Nijmegen, the Netherlands and was awarded the PhD in 1973. From then he was senior scientist at the Institute for Application of Atomic Energy in Agriculture (ITAL) in Wageningen. In 1981 he joined DLO (Dutch Agricultural Research Organization) as Director of Plant Productivity Research and Director of International Cooperation. From 2000 he is General Advisor of the Board of Governors of Wageningen University and Research Centre on International Relations and Public Affairs. Fons Werrij holds an extraordinary chair at Radboud University Nijmegen on ‘Use and Management of Biological Knowledge in Society and Industry’ and he chairs the National Program Committee on ‘the Societal Component of Genomics Research’. Until 2004 he was member of the management committee of the OECD cooperative program ‘Biological Resource Management for Sustainable Agricultural Systems’. From 1997 he is the Secretary General of the European Agricultural Research Initiative (EURAGRI).

LUNCH PROGRAMME THURSDAY 20th & FRIDAY 21st APRIL 2006 Poster sessions During the lunch breaks on 20th and 21st of April posters will be presented at the lunch venue. Posters will be presented by the author(s) of the posters in four different sessions. During each lunch break there are two sessions of 30 minutes in which 3-4 posters are presented and discussed. Each session has its own moderator. The poster abstracts can be found on page 74 - 80.

Thursday 20th of April

Friday 21st of April

13.15 - 13.45 Session 1

12.00 - 12.30 Session 3

Moderator: Hub Zwart M Bhardwaj The ethical challenges of statistical validity in population genetics research: some preliminary thoughts N Ries Ethical, legal & social issues in nutritional genomics G Valkenburg Liberal discourse and genomics

13.45 - 14.15 Session 2 Moderator: Martina Cornel S Detmar Expanding neonatal screening: Health care providers attitudes on desirability and acceptability N Hallowell Lay and professional understanding of cancer genetics activities in the UK D Schuurbiers Empowering scientists in their societal responsibility

Moderator: Frans van Dam M Harvey What should we do about unknown unknowns? Risk, ignorance and debating GM crops. J Wilkin Public Participation in forest genomics in British Columbia C Nolan Media representation on genomics and the implications for public understanding of science. J Lopez & A Robertson The emergence of ELSI discourse in Canada: towards a theoretical understanding

12.30 - 13.00 Session 4 Moderator: Mairi Levitt J Lewis From genomic to post-genomic data repositories C Heeney & M Parker Governing genetic databases A Bartlett Automating biological science: philosophical problems and sociological implications

Post-graduate students lunch session On Friday April 21st, the Post-Graduate network (UK, Netherlands and Benelux) will organise a special lunch-session for post-graduate students and those interested in the activities of the network. During this lunch, representatives from the PFGS and CORSAGE will introduce the spirit of their network, and overview some of the new activities that this very unique network undertakes. PFGS Initiated in 1998, the Postgraduate Forum on Genetics and Society (PFGS) provides a common forum for the next generation of academic researchers from a spectrum of fields, including sociology, psychology, anthropology, science and technology studies, law and philosophy, to engage with each other in productive dialogue. Contact person: Conor Douglas (cd512@york.ac.uk) CORSAGE Cooperative Researchers on Genomics and Society (Corsage) was founded in 2003 as a platform for discussion and cooperation for junior researchers in the wider field of genomics and society. Via informal meetings and symposia Corsage provides opportunities for sharing and learning in an interdisciplinary setting. Contact person: Nikki Vermeulen (N.Vermeulen@philosophy.unimaas.nl)

SESSION I-A KNOWLEDGE, PERCEPTION AND ATTITUDES TOWARDS GENETIC TESTING M van den Berg1, D Timmermans1, J Kleinveld1, L ten Kate2, D de Smit3 & J van Vugt4 Institution(s) 1 Institute for Research in Extramural Medicine, Department of Public and Occupational Health, VU University Medical Centre, Amsterdam 2 Department of Clinical and Human Genetics, VU University Medical Centre, Amsterdam 3 I&K Com, Abcoude 4 Department of Obstetrics and Gynaecology, VU University Medical Centre, Amsterdam Title Cognitive and affective components of risk perception and their influence on the decision to undergo prenatal screening for Down syndrome Advances in genomics result in an increasing number of genetic tests that will come available. The decision whether or not to undergo prenatal genetic testing is a complex one, as many risks play a part. So, risk communication is a standard part of counselling for treatment or screening decisions. However, people find it difficult to adequately understand risks, and the role of risk perception in health decision making is not clear-cut. This study aimed to investigate whether a cognitive component and an affective component of the perception of the risk of having a child with Down syndrome could be discerned, using two different types of risk perception measurements: numerical and verbal questions, respectively. Furthermore, we aimed to assess the role of these risk perception components in the process of making the decision to accept or decline prenatal screening for Down syndrome. In a sample of 1650 pregnant women, risk perception (both numerical and verbal), age, childrelated anxiety, and the intention to undergo the prenatal test were measured. Principal component analysis confirmed that the perception of a risk includes both a cognitive and an affective component. Furthermore, the correlations between both the risk perception scales and the intention to undergo prenatal screening were very small. So, both components of perceived risk seem to play a limited role in the decision making process. The findings of this study implicate that counselling about genetic testing, should not focus merely on the correct understanding of the risk figures, but it should also give attention to the affective aspects of risk perception. Author(s)

Author(s) H Calsbeek, M Morren, J Bensing & M Rijken Institution(s) The Netherlands Institute for Health Services Research, Utrecht Title Knowledge and attitudes towards genetic testing, a two-year follow-up study in patients with asthma, diabetes en cardiovascular diseases Background: Scientific knowledge on genetics is growing fast, resulting in far-reaching implications for the possibilities and choices in health care and in daily life. Especially for patients with high prevalent chronic diseases that (partially) have a genetic aetiology, such as asthma, diabetes mellitus (DM) and cardiovascular diseases (CVD), and their families and offspring. Adequate knowledge regarding the genetic component of diseases, as well as personal attitudes towards DNA-testing, are major determinants of optimal utilization of genetic testing. 23

Methods: Data from patients with asthma, DM (type II) and CVD were collected within the Panel of Patients with Chronic Diseases (PPCD) in 2002 and 2004, resulting in 398 data-pairs. Results: Factual knowledge mainly relates to associations between genes and diseases, less is known about associations between genes, chromosomes, cells and body. Multivariate regression analyses revealed a younger age, a higher educational level and the perception of own illness as hereditary as most important determinants of factual knowledge. Perceived knowledge on DNA-testing has not increased since 2002. The attitude towards genetic testing hardly changed either. Most positive are patients about general subjects covered by rather distant statements, many patients, however, are still worried about the consequences for taking out insurances. Less perceived medical genetic knowledge and more perceived social genetic knowledge were found predictive for a more reserved attitude towards genetic testing. Conclusions: Advanced developments in the field of genetics are not accompanied by increased knowledge in patients with common multi-factorial diseases. Their attitudes towards DNA-testing have also hardly changed in a period of two years. The finding that more perceived knowledge of social consequences results in more reluctance can be considered an indicator for the necessity of a social debate on genetic testing.

Author(s) K Featherstone1, F Ticehurst2, P Atkinson1 & N Craddock3 Institution(s) 1 Centre for Economic and Social Aspects of Genomics (CESAGen),Cardiff University, UK 2 Wales Gene Park, Cardiff University, UK 3 Department of Psychological Medicine, Cardiff University, UK Title Psychiatric Genetics: Emerging Personal and Family Implications The Department of Psychological Medicine, Cardiff University, which hosts the MRC Cooperative Group in Neuropsychiatric Genetics is at the forefront of research exploring the genetic architecture of psychosis. Major mental illnesses are highly heritable conditions, with schizophrenia having a heritability estimated at 60-85% and bipolar affective disorder at 7085% and susceptibility genes (e.g. Dysbindin, NRG1, COMT and DAOA) have been identified and associated with both these disorders. Although these developments are at an early stage and as yet no genetic tests are available, the social implications of genetic diagnoses and risk assessments are likely to display some particular characteristics that â&#x20AC;&#x201C; while not uniqueâ&#x20AC;&#x201C; have special force or urgency in this context. The potential for stigma and shame among family members, pressures for secrecy and non-disclosure among kindred, and the medicalisation of moral categories have special salience in psychiatry. We have identified complex dynamics of information-exchange and the disclosure or withholding of genetic information amongst individuals and families affected by a wide range of familial conditions. Families are sites of mutual surveillance and scrutiny and they are also sites for complex patterns of belief and understanding of genetics, inheritance, health and illness. Thus, within this paper we will build upon these findings to discuss potential ways in which these themes are likely to manifest in the context of these recent and ongoing developments in the field of psychiatric genetics. 24

SESSION I-B IMAGINATION – LINGUISTIC- / VISUAL MATERIAL R Zwijnenberg1 & H Chandler2 1 Universities of Leiden and Maastricht, The Arts and Genomics Centre 2 The Arts and Genomics Centre, University of Amsterdam (SILS) In this session we will focus on the specific roles that the visual arts can play in the public moral debate on genomics. How does art function in and relate to this public debate? The function of imagination in societal and philosophical debates on genomics almost always stays within the linguistic realm of narratives and metaphors. More often than not in the form of science fiction. The visual arts cannot and will not deny linguistic aspects in the use of metaphors of course, but these arts take the ‘image’ in imagination far more profoundly and seriously. The visual arts produce specific effects as a result of their visual and material character. This session will discuss why and how visual imagination and visual art, through its specificity of medium and content, may contribute to public debates in ways that substantially differ from other forms of debate. Could it, for example, create an embodied awareness of the impact and importance of genomics and genomic research? The four speakers in this session, who are all involved in the research programme New Representational Spaces. Investigations of the interactions between and intersections of art and genomics and The Arts & Genomics Centre (www.artsgenomics.org), will discuss cases to elaborate this issue. Moderators Institution(s)

Author(s) C van der Weele Institution(s) Wageningen University Title Moral debate and visual art: dual coding? Van der Weele will discuss what happens to the moral debate when imagination becomes visual through the arts. Referring to Piavio’s dual coding approach of verbal and imagery systems she will illustrate the subject with a specific example.

Author(s) J Boulboullé Institution(s) Leiden University Title Tracing interactions: case studies in visual arts and genomics, part 1 Author(s) D Hofmans Institution(s) University of Amsterdam Title Tracing interactions: case studies in visual arts and genomics, part 2 Boulboullé and Hofmans will present case studies to demonstrate and discuss the visual, the material and the linguistic aspects of the visual arts. Artists Adam Zaretsky, Paul Vanouse en Tissue Culture and Arts are to be investigated for their public appeal.

Author(s) M van Rijsingen Institution(s) The Arts and Genomics Centre, University of Amsterdam Title Seeing/Reading Cultures: Imagination and Signification in DNA Portraits Van Rijsingen investigates the question of identity in relation to the visual, material and informational aspects of genomics. She will illustrate this with a few artistic examples, specifically chosen for their play with embodied experience.

SESSION I-C HOW PEOPLE FRAME DISEASES Author(s) S Badger Institution(s) Centre for Family Research, Faculty of Social and Political Sciences University of Cambridge Title Demarcations of the obese body Despite complex understandings as to the causation of obesity, the obese body is commonly seen to be somewhat self-evident. Consequently, descriptions of the obese body hold an increasingly significant political, public health, scientific and personal power. How actors engage with these descriptions vary from the moral and self-evident, to scientific curiosity, through to personal experience. That is to say, the multiplicity of norms that can be attributed to the obese body to define some parts as normal and other parts as beyond normalcy cross a broad range of public and private structures and experiences. This paper draws on data collected as part of an ethnographic study that crosses the various locales and experiential perspectives of actors in genetics of obesity study. Across the clinic, the laboratory and the everyday worlds of participating children and their families, I argue that the obese body is described and thus organised through a layering of these spaces and their priorities. Through historical, popular and expert documents, and observational and interview data gathered across these locales, I will highlight the multiple voices that are employed by individuals to fragment, describe, construct and live with the obese body.

Author(s) P Boddington & U R채is채nen Institution(s) Institute of Medical Genetics / Health Communications Research Centre, Cardiff University, UK Title Genetics, history and culture: explanations for ill-health amongst Aboriginal Australians Many accounts of disease and ill health have looked back to an imagined golden age of good health. In the case of Aboriginal Australians, such accounts are grounded in historical documentation of their good health status prior to European contact. The Australian Aboriginal health debate is heated, and makes prominent reference to the identity of Aboriginal people and culture, yet the significance of genetic accounts are frequently downplayed. We examine two differing explanations that have been proffered to account for the current extremely poor health status of these peoples. Both cite biological reductionist accounts as causal factors interacting with historical factors. On the genetic evolutionary hypothesis, a people who have adapted genetically to cope with a hunter-gatherer lifestyle are genetically ill equipped to cope with the adoption of a Western sedentary lifestyle of constant food availability. On the other hypothesis we examine, European colonisation and the dispossession of Aboriginal peoples from land, culture and family operate as stressors that cause physiological responses, which directly and indirectly act to produce high rates of chronic disease. Of particular interest is how the genetic and the physiological components of these explanations interact with the historical, and with Aboriginal notions of health, culture and identity. Our analysis indicates that in this instance, in stark contrast to a physiological

account, genetic accounts not only do not help advance an understanding of a group’s identity but conversely, act to mask it. This may help explain relative lack of interest in genetic explanations amongst Australian Aboriginal peoples.

Author(s) H Willén Institution(s) Nordic School of Public Health, Göteborg, Sweden Development of an endangered identity within a Myotonic Dystrophy family: an exploratory narrative study For years those researching families at risk for hereditary disease have argued that more knowledge is needed regarding the genetically at-risk identity. Novas and Rose claim that the birth of the person “genetically at risk” induces new and active relations to oneself and one’s future. But how does this new identity emerge in an individual and what consequences will different developmental paths have on an individual’s future risk-related behaviour? To answer these questions we need to look into how identity is formed in general, and to how the interaction between contextual (family, neighbourhood, culture) and intraindividual factors (personality, coping) shape different courses of identity development. In families with late onset autosomal diseases we will need to consider the added challenge of having a progressively ill parent on identity development in general and on the young person’s growing awareness of own and siblings’ risk status in particular. In this paper I will explore the emergence of identities threatened by potential disease and other losses (such as untimely death of parent, own future prospects). A series of retrospective interviews with adult members of the author’s own family, in which several are affected by Myotonic Dystrophy, were carried out. The results are intended to generate hypotheses for a study of identity issues in children/adolescents in families with a somatically ill parent with/out known genetic risk.

SESSION I-D PUBLIC(S) AND INTERACTION Author(s) J Jacobs & B Gremmen Institution(s) Centre for Methodical Ethics and Technology Assessment, Wageningen University Title Genomics research on Phytophera infestans: the views of the stakeholders Recent advances in plant genomics have presented society with new opportunities to develop modified and novel products. To feed the vastly increasing world population improved crop characteristics are developed. The Centre for BioSystems Genomics (CBSG) argues that the results of its projects on Phytopthora infestans, a potato fungus which causes big losses, may offer an important solution to meet this challenge. Because CBSG aims at durable societal solutions by creating mutual understanding between science and society, interactive approaches seem to be promising. In an attempt to proactively engage a broad public, the CBSG is planning a range of interactive activities to involve all kinds of stakeholder groups in its program. However, in the case of the genomics research on Phytopthora infestans, the knowledge about the views of different stakeholders in the potato supply chain, necessary to develop these activities, is still lacking. In this paper we present the results and first analysis of the views of different stakeholders on genomics research on Phytopthora infestans in the potato chain. Based on a literature survey and a stakeholder analysis, stakeholders were interviewed. We used the method of fourth generation evaluation: in an iterative process stakeholders were interviewed, and concerns and issues were exchanged. This method was extended by the use of questionnaires. Finally all participants were invited to a meeting for feedback on the findings of the interviews and questionnaires. In this meeting the stakeholders were confronted with each others idea’s, and were asked to reflect on it.

Author(s) A Plows Institution(s) Cesagen, Cardiff University, UK Title Making sense of emergent and “messy” publics’ interactions with medical genomics: fieldwork as ‘upstream public engagement’ Constructing any actor group as completely "pro" or "anti" medical genomics fails to map the context- dependency, and cultural and political situated-ness, of actor responses. Emergent public engagement with genomics is messy. Law (2003) advocates developing methodologies for exploring social ‘mess’. Fieldwork in ‘latent’ (Melucci 1996) networks, tracing ‘discursive turns’ (Dryzek 2000) (especially outside the official policy sphere) picks up subtleties of meanings, complexities and ambivalences, as core actors, alliances, enemies, frames and issues emerge. Fieldwork could thus be described as ‘upstream public engagement’ (Wynne/Demos 2004). The paper will firstly give an overview of the field, highlighting core areas of contention and convergence, with examples from predominantly UK-focussed ethnographic research. It will then focus on two specific issues: patents and genetic screening/testing of embryos. Both subjects are highly topical and show how multiple issues and frames accrue to a ‘single issue’.

These create: a) clearly established allies and enemies on certain axis lines (‘usual suspects’); b)occasionally unusual assemblages (Irwin and Michael 2003) / convergences (‘strange bedfellows’); and c) grey areas; ambivalence. Making sense of emergent patterns is challenging. For example, ‘strange bedfellow’ social actors themselves are often very wary about the context- dependant company they can find themselves keeping; they generally want to maintain identity boundaries, despite frame crossover. Issues such as globalisation interact with genomics, triggering specific social ‘expressions’. Ambivalence/uncertainty about core frames and boundary management also indicates a particular stage of emergent social mobilisation. In public policy terms, frame convergences could also be a good catalyst for developing social ‘crosstalk’ (Bucchi 2004).

Author(s) N Wieringa, H van der Windt & J Swart Institution(s) Science and Society Group, Biological Centre University of Groningen Title From academic to product-oriented knowledge: constructing health claims for functional foods Genomics and proteomics offer important research tools for understanding health and disease development. The worldwide obesity epidemic has fuelled the research into underlying mechanisms of energy metabolism and application of this scientific knowledge in technological developments, such as functional foods. This context of product development provides an arena to study the construction of health claims and their societal implications. Our case study involves a chain of product development in which knowledge translations occur. Academic knowledge on (patho) physiological mechanisms and functionality concepts, is translated by an intermediate, or boundary organization into product-oriented knowledge that is strategically used to develop and market functional foods with specific health claims. To be successful in the market, these claims accordingly have to be linked to public or common knowledge on overweight or obesity. This translational process is guided by different interests and dependencies in which market driven positions play a role in defining the choices made and research questions studied. Therefore these processes also contribute to the ways in which our society defines the obesity problem and solutions to it. Translations affect the context of knowledge and the knowledge itself by selective reduction and adaptation. For example, the academic knowledge on functionality concepts of functional foods can also be used to support alternative approaches to overweight and obesity. However, such alternative interest parties are currently not or poorly involved in the chain of product development. Assessment of the quality of the health claims of functional foods needs to address these selective processes in order to balance our growing dependence on food technology and framing of a serious societal problem.

SESSION I-E GENOMICS BASED PERSONALIZED NUTRITION: HOW TO HANDLE UNCERTAINTIES? The last decades, effort put into improving dietary habits through health education has not been very effective: actual consumption does not match with basic recommendations for healthy nutrition. The growing burden of disease due to obesity, diabetes, cardiovascular and malignant diseases stresses the need for innovative approaches to combat these diseases through preventive strategies. It is expected that in the future, nutri-genomics science will give insight on the relationship of what we eat with the way our genes function. There is, however, great uncertainty to what extent this relationship will be clarified. This panel provides a critical overview of the issues connected to nutri-genomics and uncertainty in science, ethics, law and communication science.

Author(s) M Muller Institution(s) Division of Human Nutrition, Wageningen University Title Scientific basis for individuality: challenges and (un)certainties Tailoring to an individual’s genetic make-up can be considered the next step in optimizing consumer health through personalized nutrition. It will take time before scientific evidence for personalized nutrition based on genetic make-up is provided. At this moment, uncertainty exists on when and how Personalized Nutrition will or can be applied in genetic tests, personalized recommendations or personal products.

Author(s) R Komduur, M Korthals & H te Molder Institution(s) Department of Social Sciences, Applied Philosophy group, Wageningen University Title Ethical implications of different levels of uncertainty for the application of nutri-genomics Different levels of uncertainty complicate finding an ethical acceptable form for the use of nutri-genomics in relation to the prevention of diseases. This paper argues that complexities in the interaction between nutrients and DNA, the enormous amount of data that needs to be handled, and questions about the link between susceptibilities to food and certain polymorphisms, may have major ethical implications. The influence of uncertainty on the ethics of nutri-genomics has been a scant topic of research. This paper will analyze the ethical implications of different levels of uncertainty with special reference to informed consent and mutuality, accountability, responsibility and freedom.

Author(s) M Cutter Institution(s) Lancashire Law School, University of Central Lancashire, UK Title Personalised Nutrition and the Governance of Uncertainties Holding a “policy crystal ball” up to science this paper engages with the issue of the governance and regulation of personalized nutrition and related nutri-genomic technologies. In

so doing this paper provides a legal and bioethical perspective of the relevant governance documents and theories that apply, or might influence, both the scientific and industrial (commercial) development of personalized nutrition, and poses questions as to the efficacy of these existing governance frameworks. In conclusion, the paper highlights the relationship between the governance of genetic databases, GM foods and nutrition supplements as being a key to the understanding of the potential regulatory dilemmas the future might hold, and asks the question: How can we learn from the past to regulate the future.

Author(s) L Bouwman Institution(s) Sub-department Communication Science, Communication Management Group, Wageningen University Title Personalized Nutrition: communicating on uncertainties Personalized Nutrition takes place when individuals include their unique genetic makeup into their every day decisions about nutrition to maximize their own or their familyâ&#x20AC;&#x2122;s health. The success of Personalized Nutrition in terms of contributing to health depends on how it will be integrated in the process of behaviour change. It is known from behaviour change models that beliefs on outcomes of behaviour and perceived severity influence motivation to change. It is expected that uncertainty on the relation between genes and health will therefore complicate communication strategies.

SESSION II-A GENETIC TESTING: INTERNATIONAL LEARNING FROM NATIONAL TRENDS Moderator D Stemerding Institution(s) Science, Technology, Health and Policy Studies (STeHPS) School of Business, Public administration and Technology, University of Twente Genetic testing is articulated and promoted today as an important theme for the future of health care in Western countries. The movement of genetics from the clinic to public health, and the advent of new tools for genetic testing on a population scale, for instance micro arrays or tandem mass spectrometers are important trends. The new professional roles that are expected and needed, for instance primary care professionals trained in genetics; the new applications that have become available on a public or commercial basis for BRCA testing; the increasing number of people that are open to screening, e.g. in cascade screening for common disorders such as familial hypercholesterolaemia (FH), and so on and so forth, are other trends that all seem to surpass national boundaries. Susceptibility testing or carrier testing are possibilities that will increasingly emerge in all Western health care systems. Local differences seem minor in face of these broad trends. Yet these local or national differences will be the focus of this session. The aim is to explore the future of genetic testing in health care by taking into account the characteristics of various countries or â&#x20AC;&#x2DC;national systemsâ&#x20AC;&#x2122;. Speakers from various countries will elaborate on the trends in their home country, and show how national (health care) systems shape or condition the embedding of genetic testing within or outside current practices of health care (e.g., in the commercial arena).

Author(s) R Kollok Institution(s) Research Centre for Biotechnology, Society and the Environment, University of Hamburg, BRD Title Shared interests and divided responsibilities. Genetics in the German health care system. Due to historical burdens of Nazi genetics and eugenics, rebuilding of German genetics occurred on a very basic level only after WWII. During the 1960th and 1970th, a new framework was established, centering on severe, monogenetic diseases, consent and individual care. Until about the mid 1990th, genetic services and genetic testing were largely in the hands of professional geneticists. In recent years this picture changed. With the introduction of molecular genetics, doctors from other medical specialties like oncology or haematology increasingly claimed access to genetic methodology and resources from the public health insurance system for providing genetic analysis and diagnosis. After initial discussions about professional responsibilities, pilot projects for predictive and preventative genetic testing were initiated which finally found their way into regular health care. Today the situation is characterized by common interests of diverse medical professions to establish genetic testing and services, but with a clear division of competence and responsibility for different fields of activity.

The paper will focus on some recent developments of genetics in Germany. First, it will depict some examples of successful implementation of genetic testing into the health care system. Second, it will analyse some of the structural features of this development. It will show that modern human and medical genetics in Germany now is shaped by coexistence of different professional specialties on the one hand, and demarcation on the other hand, separating professional genetic practices from commercially driven genetic testing, paternity testing or life style genetics. Finally, the paper will reflect on recent discussions about the role of genetics in Public Health and their impact upon future developments of Genetics and the German Health care system.

Author(s) S Parthasarathy Institution(s) Ford School of Public Policy, University of Michigan, USA Title Building Genetic Medicine: Disease, Technology, and the National Politics of Health Care Despite the global nature of both the scientific endeavors and potential health implications in genomic medicine, national context is playing an important role in the way this field is being shaped. In this paper, I argue that national context is being felt not just in policy and political debate surrounding genomics but also at the level of practice—fundamentally shaping human genome science and technology. Through comparison of how genetic testing for breast and ovarian cancer (BRCA testing) was built in the United States and Britain, I develop three arguments. First, I demonstrate that national context played a very important role in the way the new technology was built. In the United States, BRCA testing was built as a commercial laboratory technology that was available on demand, while in Britain, it was a clinical service offered by the government’s National Health Service only to those deemed to be at “high risk”. Second, I complicate most predictions of our genetic future, by showing that because genetic medicine is being built quite differently in different national contexts, it has rather different national consequences for our health care and lives. Finally, I will argue that by understanding how national differences are playing an important role in the development of genomic medicine, we may be able to better understand how to engage in transnational scientific cooperation and technology transfer, and better anticipate the challenges to globalization that are beginning to occur across the world.

Author(s) C Heeney Institution(s) ESRC genomics, University of Edinburgh, UK Title Evaluation of Genetic Health Services As the science of genomics advances so does the expectation of a revolution in health care. Those responsible for health budgets will continue to face difficult choices about which of the new genetic interventions will be funded? There is considerable encouragement for methodologies to be standardised as this seen to make the decision making process more transparent. Standardisation and transparency in

turn, it is hoped, will garner the support of ‘stakeholders’ such as health professionals, patients and the wider public, who are vital to the acceptance of new technologies. Successful implementation is increasingly believed to depend on inclusion of potential social and ethical issues in the decision making process. Although many of these debates will be the same for genetic and other health services, there are nevertheless some interesting differences. The interdisciplinary field of Health Technology Assessment (HTA) aims for a ‘structured analysis’ of the evidence on relevant matters. The issue of commensuration is highly relevant in terms of what an HTA can be expected to achieve. An important question is: to what extent can seemingly incommensurable considerations be incorporated into a model so that demands for standardisation are still met? How, for example, can the experiences of patients and families be considered alongside safety, cost-effectiveness and other areas about which ‘hard’ data is available? Finally, this paper will reflect on the influence of political considerations at the various stages of the health resource allocation process.

Author(s) M Hopkins Institution(s) SPRU, University of Sussex, UK Title Exploring the convergences and divergences between national systems in the evolution of genetic testing services. Can our past and present experiences tell us something about the future? Genetic testing services can be viewed as complex technological innovations that are locally shaped by a host of institutional, historical, cultural, economic and geographic factors, even when the science drawn upon is broadly similar. By applying a ‘national system of innovation’ framework we attempt to draw out examples of commonalities and differences between national contexts in the ways that genetic testing services become embedded in healthcare. Through the separation of local differences and identification of likely contingencies (e.g. government regulatory responses to public concerns) some general trends may be identified that inform our understanding of the development of novel genetic testing services or the extension of existing services to new settings. In particular, lessons may be learned from comparisons of: the types of large-scale programs of genetic testing nationally, the location and distribution of those involved in R&D and testing, the mode of provision (private vs. public), issues raised around public acceptance, the legal and regulatory frameworks, and visions of future testing applications.

SESSION II-B PUBLIC ATTITUDES, PUBLIC PERCEPTIONS Author(s) S Detmar, E Hosli & P Kocken Institution(s) TNO Quality of Life Title Parents perceptions towards overweight of their children; the role of genetic susceptibility The prevalence of overweight in children is increasing. Genetic predisposition and lifestyle factors play a role in the development of (severe) overweight. Due to advanced technology in the field of genomics, there is increasing research in genetic processes that are involved in becoming overweight. A specific aim of genomics research is to develop biomarkers to identify those individuals that will benefit most from distinct therapies. This will ultimately result in targeting interventions to high-risk groups. One of the prerequisites to implement prevention strategies targeted towards high risk groups successfully is to understand peoples’ perceptions towards obesity, its causes and consequences. Research questions: 1. What are the perceptions of parents about overweight of their children, including the role of genetic susceptibility 2. What are the perceptions of parents about the acceptability of future genetic testing on the risk of getting overweight Focus group methodology was used. Parents from different cultures (Dutch, Moroccan, and Turkish) were involved in the study. Parents of children with and without overweight were included. Although all participants thought that overweight of children is a result of lifestyle and genetic factors, parents differed considerably in their ideas about what is meant with genetic factors and how large the influence is. In addition, parents differed considerably in their willingness to accept genetic testing. In general, Dutch parents were more reluctant towards testing than Moroccan and Turkish parents. Interestingly, we found that overweight in children is an emotionally charged topic. Parents feel themselves and also the environment keep parents responsible for the overweight of their children. At the same time, however, parents don’t want to stress overweight in the interaction with their children, because this might decrease their children’s self-esteem.

Author(s) R Pin, J Gutteling & M Kuttschreuter Institution(s) Behavioural Sciences, University of Twente Title Developments in Dutch public perception of genomics The acceptance of genomics relates to the public perception of the risks and benefits. Public trust in stakeholders and their different tasks vis-à-vis genomics depends on the type of responsibility stakeholders actively take. Various studies show that European en Dutch citizens have second thoughts concerning applications of gene technology, especially in food. Since the early 1980s several models have been developed to explain and predict the public reaction toward technological developments, from the perspective of risk perception. These studies have provided an understanding of cognitive determinants of the perception of technology development. Recently, important advances have been made in the sense that social factors like trust are added to the models. In this paper we give an update for the perception of genomics in the Netherlands. We pres-

ent the results of a national survey about genomics in November 2005 where 1010 respondents were interviewed by telephone. The concepts risk perception, trust, attitude, influence, knowledge, involvement and intendance to buy gm-products are measured. A similar study has been performed in 2002. Differences in public perception between 2002 and 2005 will be presented. Additionally for 2005 the relationship between the variables will be studied. An attempt will be made to translate the relationships into a model describing public perception of benefits and risks of genomics.

Author(s) S Wilson Institution(s) CESAGen, Lancaster University, UK Title The public interest? Perspectives on confidentiality & disclosure Contemporary bioethical debates on advances in genetics often address the ways in which the potential social impacts of genetic technologies and the â&#x20AC;&#x2DC;sharedâ&#x20AC;&#x2122; nature of genetic information increase concerns over issues of consent and confidentiality. Furthermore, confidentiality of information is one of the key themes expressed in much of the public engagement work that has been undertaken in genetics, including work within CESAGen. However, in the context of clinical genetics, different understandings and values are expressed in relation to confidentiality and anonymity. The dilemmas identified within the literature from the British Medical Association, for example, tend to privilege the duty to prevent harm over maintaining confidentiality. These differences in perspective and interpretation of key concepts are potential areas of conflict and tension. These tensions may have implications for the development and uptake not only of clinical genetic services, but also of genetic technologies more generally. This paper examines the ethical frameworks within which clinical genetics is practiced, and explores how this maps onto work emerging from focus groups held in Manchester and Lancaster with members of hard-to-reach groups.

SESSION II-C FUTURE PRACTICES, FUTURE LIVES Author(s) J Kitzinger1,2 & J Haran1 Institution(s) 1 JOMEC, UK; 2 CESAGen, Cardiff University, UK Title Origins and Futures: (False) Hopes and (Fraudulent) Promises? This paper presents the results of an extensive survey and analysis of UK news stories about ‘breakthroughs’ in therapeutic cloning and stem cell research between January 2004 and January 2006. It demonstrates that the hopes and promises expressed regarding the potential for therapeutic cloning to deliver cures and to extend life have been constantly undercut by fears about the disruptive potential of embryo cloning, even before the Hwang scandal cast doubt on the practice’s scientific foundation. This disruption is figured both through concerns about manipulating embryos – the stuff of life – for other than ‘natural’ reproductive purposes, and fears that cloned embryos will be utilised for reproduction, resulting in ‘unnatural’ offspring. Our analysis unpacks the cultural repertoires that are drawn upon in the extrapolation of potential futures – both desirable and undesirable – from current techno scientific knowledge and practices. We highlight the co-existence of utopian and dystopian imagined futures predicated on technological breakthroughs, as well as on particular understandings of biological (genomic) origins. In particular, we compare the mobilisation of arguments about the imperative to eliminate human suffering, to mandate the pursuit of any and all technological possibilities, with counter-arguments about risk and ethical transgression.

Author(s) E Pieri Institution(s) ESRC Centre for Economic and Social Aspects of Genomics (CESAGen), Institute for Advanced Studies & North West Genetics Knowledge Park (Nowgen), The Nowgen Centre, UK Title ‘You wonder who would actually be there to question the science’ Recent developments in the debate on public engagement with science in the UK have highlighted both the limitations of many PE initiatives that invite participation merely on narrow ‘risk’ questions, and the need to move engagement ‘upstream’, by opening up debate over the wider social values and visions that drive and shape technological trajectories. As new forms of social knowledge need to be incorporated in discussions and decisions concerning the value, purpose and future(s) of scientific knowledge, this paper develops and brings to the fore some of the contrasting knowledge claims, interests and value positions that emerged from fieldwork carried out with different sections of the public. The paper is based on qualitative research that included groups traditionally regarded as hard to reach, and was conducted in and around Manchester in 2005 at the ESRC Centre for Economic and Social Aspects of Genomics and in collaboration with The North West Genetics Knowledge Park. It aims to contribute to more reflexive practices among the scientists and clinicians involved in the field of genomics – particularly in predictive genetic testing and pharmacogenetics.

The paper explores and analyses emerging public values and priorities as to the relative weight of genetics vis-à-vis other factors, as well as the concept of ‘benefit’ and ‘benefit sharing’ arising in the context of predictive genetic testing, with a view to considering some of the main implications for Public Health resource allocation, and to contributing to a richer discussion and a more socially robust policy and decision-making process.

Author(s) K Weiner Institution(s) Institute for the Study of Genetics, Biorisks and Society, Nottingham University, UK Title Are we giving up on geneticization? The notion of geneticization has been in circulation since the early 1990s and has been widely enrolled across a number of disciplines and areas of enquiry. The notion has not gone unchallenged; there have been a number of critiques of the geneticization thesis. Notably, Ann Kerr has suggested that we should give up on geneticization as an analytical focus (Sociology of Health & Illness, 2004: 26, 1, 102-104). In this paper I plan to discuss the meaning(s) of geneticization and the main critiques of the notion. I will also summarise recent empirical work and discussion in this area in order to reflect on our use of the concept. My aim is to show how geneticisation has been enrolled and studied to date and provide an opening to discuss how it might, or whether it should, continue to be enrolled in the future.

SESSION II-D GENOMICS, ETHNICITY AND RACE Author(s) N Egalite & B Godard Institution(s) Programmes de bioéthique, Université de Montréal, Canada Title Pharmacogenomics and race: an analysis of the views of genomics researchers Pharmacogenomics research involving race raises important yet complex ethical, social, cultural and legal issues. Pharmacogenomics seeks a detailed understanding of inherited drug response. Building on earlier studies linking race to differentiated outcome, it is anticipated to provide, through the use of racial classification, substantial therapeutic benefits. However, the reliance on the notion of race is problematic. Current genomics knowledge invalidates the biological basis for race as it has been construed; racial phenotypes correlate poorly with the variations of interest to researchers; the very practice of genomics science is a determining influence in society’s conceptions of difference and identity. What are the implications of the scientific discourse surrounding pharmacogenomics and race? And while a survey of the literature reveals a scholarly treatment increasingly critical of the resurgence of race as a biological notion, little is known about how the practitioners of genomic science perceive these concerns. In this paper, I argue that the views on racial pharmacogenomics held by genomics researchers – and the extent to which they shape popular beliefs – warrant an ethical analysis. Genomics researchers are heavily invested in this emerging technology, and as such, their views are fundamental to the formulation of ethical arguments. This paper will also outline principles that reconcile a notion of race in all its complexity with the reality of genomics practitioners.

Author(s) N Kanellopoulou Institution(s) ESRC Genomics Policy and Research Forum, University of Edinburgh, UK Title Pharmacogenomics and racially-targeted drugs: a marriage of in-convenience? Population-based genomic research raises a variety of expectations, nurtured by the promise of understanding and managing adverse drug reactions, designing new therapeutics, and ultimately, personalising medicine. This paper analyses the emerging interest for raciallytargeted drugs in pharmacogenomics. It examines how the debate on the biological basis of race and ethnicity is being re-opened. The growth of pharmacogenomics could lead to a more refined understanding of ethnic and racial differences in drug response. To discuss this claim, I refer to the recent controversy surrounding BiDil, the first drug approved by the US Food and Drug Administration to target a specific racial group. The drug was hailed by the media as the ‘first ethnic drug’. Its recent approval, in late summer 2005, was greeted with enthusiasm by both cardiologists and the drugs industry. It was granted a precedent-setting patent as a racially-targeted drug to treat heart failure in African-American patients only. This paper discusses the way ‘race’ has been exploited to bring this drug into the market. Some experts argue that the corporate sponsor of the drug trials and now holder to the drug rights, sought race-specific approval not for medical but for commercial reasons, since the patent for the race-specific use of the drug will last 13 years longer than the patent on the non-specific use of the drug. This paper discusses the legitimacy and implications of developing race-specific drugs, in the light of controversial claims and concerns on the importance of race and ethnicity in determining drug response.

P Lakeman1 3, J Gille1, J Dankert-Roelse2, H Heijerman4, M Cornel1 3, L ten Kate1 Institution(s) 1 Department of Clinical Genetics and Human Genetics, VU University Medical Centre, Amsterdam 2 Department of Paediatrics, Paediatric Pulmonology, VU University Medical Centre, Amsterdam 3 Institute for Research in Extramural Medicine (EMGO Institute), VU University Medical Centre, Amsterdam 4 Department of Pulmonology, HagaHospital, The Hague Title Are we discriminating Mediterranean people by (not-) offering a screening test for Cystic Fibrosis with low sensitivity for migrants? Screening for Cystic Fibrosis (CF) (-carrier ship) could be offered to all people at risk in different ethnic groups. Besides people of Northern and Western European descent, migrants, like Turkish or North African people, have a substantial risk of being a CF carrier too. However, in a survey among 373 European CF-centres, in which we asked whether and which mutations in the CFTR gene have been found among Turkish or North-African CF patients, the results showed a low test-sensitivity of the common methods of DNA analysis for these Mediterranean people. Even after expansion of the mutation panels of these methods with particular Turkish and North-African mutations in order to achieve a high sensitivity in Mediterranean groups as well, a maximum sensitivity of only 64% is reached. This low test-sensitivity for Mediterranean people raises questions on whether and how to implement screening for CF(-carriers): a. should screening for CF(-carriers) be offered to everyone at risk and should the Mediterranean people be informed about the (consequences of) low test-sensitivity? b. should migrants be excluded from the offer of screening because of the low and undesirable test-sensitivity? c. or should the screening, therefore, not be offered at all: neither to people of Northern and Western European descent nor to Mediterranean people at risk? Author(s)

SESSION II-E HEALTH, FOOD AND THE ENVIRONMENT Author(s) R Gertz Institution(s) AHRC Centre, School of Law, University of Edinburgh, UK Title Let’s clear the air here - Genetic predispositions for pulmonary diseases and global environmental policy This paper asks whether lessons can be learned from medical research for global environmental policy for the benefit of future generations or whether the current regime is sufficient. As an example, the potential consequences of a possible connection between respiratory diseases and air pollution are examined. Due to the complexity of the issue, an outline of the research project planned to begin in 2007 will be presented and it will be demonstrated how genetics, environmental law, philosophy and ethics need to be linked to find answers. Some respiratory diseases have clearly identifiable causes, while others, such as asthma, a variety of potential causes and triggers. Whereas underlying causes are responsible for a disease, triggers are factors that bring on or worsen symptoms. An example is air pollution, which has a clear role in precipitating asthma attacks in children who already have the disease. Therefore, even if reducing a trigger does not remove the cause of asthma, it may lead to health gains from reducing the symptoms. Global initiatives so far focus chiefly on the Kyoto Protocol, ratified by 156 countries as of September 2005 and the largest worldwide undertaking to combat air pollution. If environmental policy needs to take account of individuals with the predisposition for respiratory diseases, does the coming into force of the Protocol in February 2005 and the decisions made in Montreal suffice? Another problem is the fact that some effects might only apply to a small minority of the population affected with the genetic disease. Could it therefore be expected of policy makers to adjust global environmental policy to protect a minority of future generations with the predisposition for the disease – a currently unknown number of people? And, moreover, will we need to rethink environmental policy and man’s role as polluter?

Author(s) T Michalopoulos, M Korthals & H Hogeveen Institution(s) Wageningen University Title Plant-genomics-enabled food: A multi-criteria model for the societal assessment of novel foods. A main goal of plant genomics research is the development of improved or novel food products. The significant investments consumed to reach this goal are assumed to be justified by the future market performance of these foods. This assumption is largely based on a narrow apprehension of the consumer as being interested in a limited range of end-product attributes (price, convenience, health, taste, colour, odour, etc.), and presupposes a relation of trust between producers and consumers. In European food markets, these assumptions seem nowadays less safe than in the recent past. The food biotechnology controversy explicated that consumers’ concerns have expanded to include socioeconomic, environmental, and

metaphysical aspects of the food production process, while declined consumer trust in the production side of the chain seems to advocate the precautious consumption of traditional or ‘more natural’ foods. For this reason it becomes important for decision makers to consider a wider range of complex ethical issues prior to food development. A multi-criteria model based on input from experts and consumers/citizens is proposed for the ethical and societal assessment of foods. For this purpose, input from a multidisciplinary experts’ panel (betagamma interaction) was produced during a workshop where a wide range of consumers’ concerns was discussed from a plant genomics perspective. Based on the workshop’s results, we wish to present a qualitative description of the impact that plant genomics is expected to have on food acceptability for each area of consumers’ concerns, and discuss a number of measurable indicators for the quantitative estimation of this impact. Next, these indicators will be used for the construction of assessment tools (‘Ethical Scores’) that can facilitate the use of plant genomics for the development of foods with increased societal acceptability.

Author(s) B Penders Institution(s) Department of Health Ethics and Philosophy, Faculty of Health Sciences, Maastricht University Title Have we been looking the wrong way all along? The contested do-ability of individualized nutrition In nutrigenomics practice two schools can be distinguished. The first is the functional genomics school, focussing on how the human body interacts with foodstuffs. The second is the nutrigenetics school, focussing on how differences in genetic makeup change the interaction with foodstuffs. Issues like individualisation, personalised nutrition, etc. originate from concerns related to the nutrigenetics school and as a result – I would like to argue – the attention of social science is directed towards the second school almost exclusively. In their problem definitions, functional genomics stress the similarities between human beings, whereas nutrigenetics stresses the differences between human beings in their relation to food and foodstuffs. Using the concept of do ability, coined by Fujimura, I will show that the diversity problem has a contested do ability. Do ability is a term used to stress that scientific work is concerned above all, with practical problems. A problem needs to be made doable on various levels of work organisation: the experiment, the laboratory and the relevant social worlds. Achieving do ability requires lots of work: various elements in the research situation need to be manipulated and strategic decisions have to be made to construct a doable problem. To make the diversity problem a doable problem, diversity has been changed from individual diversity into diversity between groups – the personalised nutrition has become group nutrition. I will argue that nutrigenomics is not about individualisation, but about classification and categorisation. Our focus should be shifted to include what we have been missing: the shaping of groups and group health.

SESSION III-A IMPLEMENTATION OF GENOMICS IN HEALTH CARE Author(s) M Cornel1, C Van El2, L Krijgsman1 & A Pieters2 Institution(s) 1 Section Community Genetics, Department of Clinical Genetics, VU University Medical Centre, Amsterdam 2 Medical Humanities, VU University Medical Centre, Amsterdam Title Confusion of tongues in Dutch debates on genetic screening The recent history of debates on genetic screening in the Netherlands differs in many respects from other European countries. Some programs have been organized earlier than elsewhere while other screening possibilities have been debated for decades before a decision was taken. Prenatal screening for Down syndrome has only recently become available to all pregnant women. In a witness seminar that took place in December 2005, the recent history of these debates was reconstructed. For prenatal diagnosis, debates appeared to be hampered by confusion of tongues on two terms: “responsible parenthood” and “population screening”: Population screening was sometimes interpreted as “governmentally approved”. The “systematic offer to a population” was considered an “option to accept or deny” or “a standard procedure unless you opt-out”. In a document published by the Ministry of Health in 1987, primary prevention as well as prenatal screening and selective termination of pregnancy were discussed in the context of the Health for All by the year 2000 (WHO) goals to limit the number of years that people suffer from chronic disease and handicap. The term “responsible parenthood” was used by the official of the Ministry to denote parents who consciously took decisions on both lifestyle risks and genetic risks, and who should take informed decisions according to their attitudes and beliefs. Several other parties however (clinical geneticists, patients, politicians, journalists) interpreted the use of “responsible parenthood” by a governmental body as interference in the private domain, and did not appreciate a governmental standpoint of what was considered “responsible”.

Author(s) C Van El2, M Cornel1, L Krijgsman1 & A Pieters2 Institution(s) 1 Section Community Genetics, Department of Clinical Genetics, VU University Medical Centre, Amsterdam 2 Department of Medical Humanities, VU University Medical Centre, Amsterdam Title Genetic screening criteria agenda setting in the Netherlands Since the 1960s principles of genetic population screening and emerging screening practices co-developed. In the 1990s on the international and national level discussions arose whether the ‘traditional’ criteria for mass screening, as formulated by Wilson and Jungner in 1968 were still feasible. It was argued that with the growing possibilities for genetic screening criteria should be more tailored to practical needs. Similar trends are discernable, yet countries seem to differ in the importance attached to certain criteria over others, and in the way criteria are actually interpreted and put to use.

In this paper I will focus on the process of agenda setting regarding genetic screening in the Netherlands between 1970 and 2005. A crucial turning point was the rejection of a long debated plan for the introduction of serum screening for neural tube defects in 1988. Different social, medical, political and policy actors for various reasons formulated concerns about screening at the time. The outcome was an enduring emphasis on the criterion of treatability. The Population Screening Act, adopted in the 1990s, underlined that principle, stating that screening for diseases for which no treatment was available was subject to special licensing. Actual admittance of new programmes, such as screening for Familial Hypercholesterolaemia and expanded neonatal screening reflect the importance of the treatability criterion. In the last two decades screening increasingly entails offering options, for instance concerning reproduction and life style, next to or instead of offering treatment. The question is whether with the growing possibilities for screening for multifactorial diseases the concept of treatability has transformed from a focus on therapeutic interventions to risk reduction interventions.

Author(s) W McKellin Institution(s) Department of Anthropology and Sociology, University of British Columbia, Canada Title Genomic Medicine for Hereditary Cancers: the Process of Developing Clinical Guidelines The development of genetic testing for hereditary cancers and the emergence of clinical services for hereditary cancer patients has brought together oncologists, largely familiar with diagnosis and treating sporadic cancers, and geneticists with expertise in assessing risk and counselling about hereditary diseases. A central issue in developing clinical service protocols for hereditary cancer programmes is bridging the differences between oncologists and geneticists models of disease and clinical practice. This paper, based on interviews with 12 oncologists and 27 genetics specialists across 8 multidisciplinary programs and long-term participant observation in a clinical hereditary cancer program, identifies the disciplinary differences between oncologists and genetic specialists in their understandings of the roles of families in cancer care, the models of disease and disease pathways, and the nature and assessment of clinical interventions. It examines the emerging synthesis in multidisciplinary clinical settings, the negotiation of shared understandings, and the development of evidence-based recommendations within the constraints of a public health system during the development of national clinical protocols.

SESSION III-B SHARING DATA, SHARING BENEFITS Author(s) B de Jonge & M Korthals Institution(s) Applied Philosophy, Social Sciences, Wageningen University Title Compensation, Distribution and Deliberation in Genomics Benefit-Sharing The term benefit-sharing is used in relation to resources that are neither purely in the public domain nor totally in the sphere of private property. From the early 1970s the term has been applied to natural resources, outer space, the international seabed and genetic resources. With respect to genetic resources the term has a central place in official documents as the CBD and ITPGRFA, and within the Human Genome Project. Here the term deals with the sharing of benefits deriving from the utilisation of genetic resources of plants, animals and humans. Therefore, benefit-sharing is highly relevant for genomics research and technologies. There are several diverging definitions and justifications for benefit-sharing in relation to genetic resources. Benefit-sharing can for example be aimed at notions of property, risks taken, stewardship and inequality. In this paper, we will analyse the different definitions of benefit-sharing relevant to the field of plant genomics and human genetics. We will show that the divergent definitions can be divided into two major approaches towards benefitsharing, centred on either a model of compensatory justice or distributive justice. Both approaches are flawed however, as they pay hardly any attention to deliberation procedures and their consultation practices are often problematic from several perspectives. Finally, we will search for new models of upstream benefit-sharing in contrast to the traditional downstream models. Thereby, we will reflect on the possibilities of deliberation as a third approach to find out the desirable context of benefit-sharing for the stakeholders involved.

Author(s) M Schellekens Institution(s) Tilburg Institute for Law, Technology, and Society, Tilburg University Title Open source biotechnology: is it feasible? Genomics research is becoming ever more dependent upon access to data and know-how. Legal instruments, such as patents and know-how agreements, are however, increasingly being used to lock in information and research findings. Access to data and analysis instruments is under pressure. When DNA base sequences were first patented this led to a public outcry but the practice of patentability of DNA-sequences was hardly affected. In a completely unrelated area â&#x20AC;&#x201C; that of software development - a similar development took place. Software is interdependent upon other software for interoperability purposes and user convenience. Software is also being locked in through instruments of intellectual property law, contract and commercial practices, such as the withholding of the source code - that is the code needed to write and modify software, but not used for executing or running software. In the software context, this has led to the emergence of the open source movement, a new ideology according to which software should not be one partyâ&#x20AC;&#x2122;s property. Software should belong to everybody and software development should be an activity in which everybody should be able to participate.

The above triggers the question: could the open source model also provide an answer to the ever-growing lock-in of genomics data and know-how? The first careful steps are being taken in this direction. The Cambia-BIOS, the Tropical Disease Initiative and the Hapmapproject are initiatives which are already taking place. They are not just about bio-informatics software, the research results – the biological data - are placed in the open source model as well. This presentation focuses attention to this new development and endeavours to provide a first exploration of the opportunities and pitfalls of open source biotechnology.

Author(s) B Williams-Jones1 & C MacDonald2 Institution(s) 1. Département de médecine sociale et préventive, Faculté de médecine, Université de Montréal, Montréal, Canada; 2.Department of Philosophy, Saint Mary’s University, Halifax, Canada Title Conflicting Interests, Benefit-Sharing and University-Industry Relations: A Socio-Ethical Analysis of Commercial Genomics Research In the biomedical sciences, and especially in genomics and biotechnology, close interactions between academic and commercial partners are commonplace. Funds from ‘big pharma’ and biotech companies have financed major genomics projects and university scientists are translating their ‘intellectual property’ into patents and start-up companies. But there are also serious concerns about the socio-ethical and policy implications of such commercialization, especially with regards to conflicts of interest and the appropriate sharing of benefits. Yet the vast majority of the literature exploring issues related to genomics knowledge and technology transfer focuses on the economic and technical benefits, or alternatively, on the dangers to universities and nations of transforming universities into ‘economic engines’. And while there is a growing critical science and technology studies literature, the ethics and policy literature still usually sees ‘industry’ as homogeneous and exploitive (or as an unquestionable good), while university researchers collaborating with industry are ‘sell outs’ and a threat to the university ‘knowledge commons’ (or innovative, science ‘entrepreneurs’). There has been relatively little reflection on the complex socio-ethical and policy issues raised for both university researchers and their industry partners, and aside from conflict of interest statements and codes of ethics (or total disengagement from commercial involvement), hardly anything on how one might resolve the associated socio-ethical and policy challenges. Drawing on theoretical and empirical research conducted at the University of Montreal, this paper will present a preliminary framework for what would constitute a professional and ethical relationship between university genomics researchers and their industry partners.

SESSION III-C THE FUTURE OF GENOMICS RESEARCH Author(s) R McNally & P Glasner Institution(s) ESRC CESAGen, Cardiff University, UK Title Beyond the Human Genome Project: Genomics, Proteomics and Systems Biology In The Century of the Gene (2000), Evelyn Fox Keller argues that the biological complexity that the HGP has made apparent has undermined the very conceptual foundations on which it was predicated. The basis of her argument is that by making the inherent complexity of genomics apparent, the HGP has undermined the gene as the central explanatory concept of modern biology. As a consequence of this she predicts that a profound paradigm shift will be necessary. In the years since the publication of Keller’s book, the Human Genome Project (HGP) has been formally completed. A number of new global research initiatives, including the International HapMap Project and the Human Proteome Project have been started. A number of events and publications have been organized where leading scientists have been invited to communicate their visions of the future of the biosciences. A recurrent feature of these communications is their use of revolutions, exemplars, new eras and other features of ‘paradigm talk’. In this paper we compare and contrast 4 visions of the future which feature examples of ‘paradigm talk’. Our objectives are to clarify how these concepts are being used by ‘omics’ actors, and to examine whether, at this admittedly early stage of the 21st century, there is any evidence for Keller’s prediction that the concept of the gene as a fundamental explanatory biological concept has been undermined. Section 1 is an overview of the 20th century from the perspective of genes and DNA. Section 2 compares and contrasts visions of the future: the genomic era; the new biology; from genomics to proteomics; and the omic revolution. The final Section discusses whether and in what ways these visions suggest that the HGP is catalyzing a paradigm shift in the biosciences.

Author(s) N Stephens, P Atkinson & P Glasner Institution(s) CESAGen, Cardiff University, UK Title Performances of Authority at the UK Stem Cell Bank Steering Committee The UK Stem Cell Bank is the worlds first publicly funded and regulated Stem Cell Bank. The Bank has been established to provide high quality and ethically sourced Stem Cell lines to accredited public and private researchers. This necessitates the development of a new type of regulatory framework to ensure these criteria are met. It is the highly interdisciplinary context of the UK Stem Cell Bank and the UK Stem Cell Bank steering committee that are charged with developing and instantiating these frameworks. This paper explores the use of vocabularies of legitimacy by the varying disciplinary voices present at the UK Stem Cell Bank steering committee. It draws upon two sites of data collection: interviews with steering committee members and observations of the committee meetings; to make explicit the performances of authority used to negotiate and secure the committee's position and working patterns. The paper develops this theme by detailing how this production of legitimacy, set within wider networks of trust, creates a set of expectations held beyond the Bank that facilitates the Banks work.

Author(s) W Boon & E Moors Institution(s) Department of Innovation Studies, Utrecht University Title Orphan Drugs and the Future of Pharmacogenomics The promise of pharmacogenomics for the health care sector includes tailor-made therapy or personalised medicines: medicines that suit the individual genetic make-up best will be prescribed and thereby enhance drug efficacy and safety. There will be a shift from blockbusters and their broad application to more individualized medicine and stratified patient populations. Some authors claim that this pharmacogenomics future resembles the present situation of orphan drugs. Medicinal products intended for diagnosis, prevention or treatment of rare diseases (from which five out of ten thousand EU-citizens suffer, such as Gaucher and Fabryâ&#x20AC;&#x2122;s disease) are called orphan drugs. The small market size of these drugs results in problems in the health care sector, such as difficulties in diagnosing these diseases and the lack of interest of the pharmaceutical industry to develop products. The question we want to answer in this paper is to what extent do orphan drugs differ from blockbuster drugs in their development, utilization, regulation, reimbursement, and impacts on the health care sector? And to what extent do these orphan drug characteristics apply to a pharmacogenomics future? Firstly, the paper will give an overview of the current orphan and blockbuster drug situation based on a literature review and a range of interviews of experts in the health care sector in the Netherlands. Secondly, this situation is compared to a pharmacogenomics future that is based on studying the most prominent review articles on the topic and two archetypical examples of pharmacogenomics that are currently on the market: Herceptin and the Amplichip.

SESSION III-D PUBLIC PERCEPTIONS, PUBLIC CONSULTATIONS Author(s) A Dijkstra & J Gutteling Institution(s) Department of Communication, Faculty of Behavioural Sciences, University of Twente Title Roles of the public in the genomics debate In today’s society the introduction of new technologies requires public acceptance. Both scientists and politicians agree on the necessity of public participation in the development of new technologies like genomics. This requires understanding of the relation between public and science. Social research examines this relation frequently from the perspective of the active and interested public. However, public can have various roles, which constantly shift, and is sometimes rather passive. Research examining the relation between public and science therefore should take into account these divergent publics, and include active and passive publics. We therefore conducted focus groups in which actors with different backgrounds were asked about their role in the public debate on genomics and the role of relevant others. We also asked how trust, knowledge and communication influence these roles and the relations with others in the public debate on genomics. In this paper we present the (first) analysis of the data and relate these to the main concepts of the two models of public understanding of science in use (deficit and interactive). In so doing we gain insight into the nature of publics, the roles various publics have and how roles shift and we contribute to further understanding of important concepts in the research area.

Author(s) S Harmon Institution(s) INNOGEN, University of Edinburgh, UK Title From Engagement to Re-Engagement: The Expression of Values in Patenting Proceedings or ‘What the Salmon Does When it Comes Back Downstream’ All too often, participatory exercises are conducted, legislators draft laws/regulations, and publics are left questioning the real value of their input (i.e.: they have no way of measuring the influence or efficacy of their contribution to the final regulatory content). Dissatisfaction with “upstream” participation naturally results in stakeholders looking further “downstream” for influence. In the biotechnology arena, patent opposition proceedings represent a participatory tool for stakeholders who may have been left out of or who have failed to achieve their goals through “upstream” mechanisms. This paper explores some biotech patent cases so as to determine what values are given life “downstream” through the European Patent Office’s “legal” interpretation of the morality provision. In particular, it examines certain decisions (primarily decisions in opposition proceedings, which represent legal attacks on/at the commercialisation stage of the innovation process) over the last 15 years, contrasting the use of the morality provision between earlier and more recent decisions. Part I outlines the patenting criteria erected by the European Patent Convention (1973) and reiterated in the Biotechnology Directive 98/44/EC and discusses some of the moral approaches that found expression in the battle to draft the Directive. Part II examines some patent proceedings which consider the “morality” provision. Such an evaluation at the confluence of policy, law and ethics may allow us to answer the following questions: What values (if any) are evident in this “downstream” re-engagement? What values are given expression through the interpretation of this regulatory provision? Does this “downstream” activity offer any insight into

the questions sought to be addressed further “upstream”? Author(s) M Otlowski, D Chalmers, D Nicol & M Stranger Institution(s) Centre for Law & Genetics, University of Tasmania, Hobart, Tasmania, Australia Title Protecting human genetic information in Australia: process and outcomes from public consultation. The new genetics ‘industry’ has emerged at a time of public ambivalence towards science, an ambivalence that could move to outright distrust when the commercial imperatives of increasingly market-oriented science gradually replace the more traditional imperative of ‘public good’. Genetics research and development is at the vanguard of the movement of science into the market economy, and as such, has come under intense public scrutiny. Commercialisation aims for rapid advances in research, leading to new genetic therapies and other public health benefits. However, this rapid progress has resulted in an un(der)regulated genetics industry in many countries, and challenges to accepted notions of privacy, ownership and consent. The political and social environment now demands public participation in the development of a regulatory regime for the industry. The Australian Law Reform Commission embraced public participation through a two year, two-stage national inquiry into the protection of genetic information. More than three years after the publication of the internationally acclaimed report, Essentially Yours, the Australian government has now responded to the 144 recommendations made by the ALRC. This paper will outline the pros and cons of the process and the implications for regulating the industry.

SESSION III-E CLONING AND STEM CELL RESEARCH Author(s) M Kirejczyk Institution(s) School of Business, Public Administration and Technology Science, Technology and Health Policy Studies, University of Twente Title Experts and public in the regulatory debates on embryonic stem cell research: the British and the Dutch debates compared The prospect of using human embryos for stem cell research provoked diverse public and political responses in many countries. The issue quickly became controversial and governments were faced with a precarious regulative task. The regulatory processes coincided in time with the declining legitimacy of the traditional model of decision-making in science and technology which relies on expert advice. In order to deal with that problem, attempts were made in several European countries to involve the ‘public’ in debates on controversial policy issues. In the proposed paper I will analyse the embryonic stem cells (ESC) debates that took place at the turn of the century in the UK and the Netherlands. I will focus on the ways the ‘public’ was constituted in these debates and how it was engaged in the regulatory processes. In both countries broadly the same categories of actors were involved in the debates and they often used similar arguments. But the manner in which the debates were organized, the roles played by these actors and the styles of debating varied considerably. The debates pursued different trajectories, but, perhaps surprisingly, the resulting regulative policies followed the recommendations of the expert bodies. What can we learn from this comparative analysis about conditions for meaningful public engagement in debates on science and technology?

Author(s) K O’Riordan & M McNeil Institution(s) CESAGen, Lancaster University, UK Title Origins and Futures: The Figure of the Clone in the Media Imaginary The human reproductive clone has been represented as a figure of hope and dread in Western literature and film since the late nineteenth century. This established repertoire of images has been supplemented in recent Hollywood film through a proliferation of images of cloned human embryos. This paper traces and analyses three key features of the imaginative constitution of the clone in early 21st century Hollywood films with specific reference to Blade II, The Island and The 6th Day. These include the identification of cloning with therapeutic promise for curing disease and the foregrounding of its significance in securing the ongoing progress of science. In addition, we explicate the significance of the shift in cloning narratives from visions of mass produced humanity to tales of individual restoration (particularly with reference to precious children). This analysis is contextualised through reference to the debates about therapeutic and reproductive cloning which have emerged in other media contexts. An important dimension of this presentation is the foregrounding of the ways in which recent filmic figuring of clones evades the distinction between therapeutic and reproductive cloning which have been so crucial in recent political contestation around this aspect of genomic development. In this presentation we argue that the films we have analysed indicate a new and significant reconfiguring of Western utopian expectations and dystopian fears mobilised by the figure of the clone.

Author(s) S Wainwright, C Williams, M Michael, B Farsides & A Cribb Institution(s) Kingâ&#x20AC;&#x2122;s College London & Goldsmiths College London, UK Title Genomic & genetic discourses on human embryonic stem cells: an international ethnography of laboratory science In this seminar, we draw on our ESRC funded ethnography on the scientific, medical, social and ethical dimensions of stem cell research to discuss genomic and genetic discourses in stem cell science. We report on how biomedical scientists, in both the UK and the USA, view the scientific literature and their own experimental research in the emerging field of human Embryonic Stem (hES) cells. We discuss three particular aspects of stem cell genomics and genetics: 1. the genetic manipulation of hES cells to make specialised cells; 2. the genetic modification of the immunological characteristics of specialised cells (made from stem cells) to avoid transplant rejection; and 3. the prospects for genetic reprogramming of specialised cells to stem cells. We argue that the genomics and genetics of hES cells are important examples of some of the ways in which scientific research is redefining the future nature of the body, identity and health in the developing bio-societies of late modernity. More generally, we contend that embryonic stem cells are a productive case study through which to develop understandings of the interactions between genetics and genomics, and science and society.

SESSION IV-A ROLE AND ATTITUDE OF CHILDREN Author(s) M Arribas-Ayllon Institution(s) CESAGen, Cardiff University, UK Title ‘Whose autonomy are we preserving?’ Politics of citizenship in counselling childhood genetic testing In this paper I want to consider the kind of ethical problematisations that have recently emerged in relation to the genetic testing of children, and the political and ethical consequences these present for genetic counsellors and practitioners. As it currently stands, the professional (medical) community is roughly divided into two positions which reflect current neoliberal conceptions of freedom and government. On the one side, some practitioners and ethicists uphold the ‘right’ of parents to request genetic testing for children ‘at risk’ of (un)treatable diseases; on the other side, there are strong concerns about the ways in which parents might control and respond to genetic information especially if this could impair the child’s autonomy, privacy or welfare. There are different ways of conceptualising this tension among professionals, families and children, and recent qualitative studies of genetic counselling reveal highly complex encounters in which the concerns and desires of both parties are tactically played out under the superficial title of ‘non-directive’ counselling. This paper considers the limits of informed consent for predictive and carrier testing from the point of view of three interrelated but contradictory positions: (1) families and legal guardians are capable of self-government as responsible consumers of genetic information; (2) practitioners are legitimate guardians for preserving the potential autonomy of genetically at risk children; (3) genetic information invokes both rational and irrational desires for the management of risk and uncertainty. Current initiatives in Britain suggest that problems of informed consent are tentatively resolved via neoliberal solutions which foster an ethic of self-governance, that is, by actively constituting the capacities of an autonomous, self-regulating citizen. The differences among professionals can often be represented as based upon different views as to whose autonomy is to be given priority – that of the parents or that of the child.

Author(s) E Smets1,2, T Meulenkamp1,2, E Mollema2, P Romer3, I van Langen2 & A Tibben2 Institution(s) 1 Department of Medical Psychology, Academic Medical Centre, University of Amsterdam; Department of Clinical Genetics Academic Medical Centre, University of Amsterdam 2 Institute for Bioethics, Maastricht University 3 Centre for Human and Clinical Genetics, Leiden University Medical Centre Title Genetic testing for familial cardiovascular conditions in minors; their perception of the implications of their carrier status. Predictive genetic testing for familial cardiovascular conditions such as Familial Hypercholesterolemia (FH), the Long QT syndrome (LQTS) and Hypertrophic Cardiomyopathy (HCM) has become possible in families in which the causative mutation has been identified. The most devastating possible consequence of these diseases is sudden death, sometimes in minors. Carriers can reduce their risk by the use of medication and adaptation of life style. The latter may involve diet restrictions or avoidance of triggering situations such as competitive sports, stress or loud noises.

In the case of minors, the decision to undergo genetic testing lies with the parents. However, testing of minors is a point of (ethical) debate. An issue in this debate is how knowledge of their carrier status might benefit or harm minors. So far, children’s own experiences in this regard are unknown. Therefore, a qualitative study was initiated to explore the cognitive, behavioural and emotional impact of carriership on minors (aged between 8 and 18 years). We interviewed 35 minors with a positive carrier status from 30 families. Semi-structured interviews were conducted at the families’ homes. Minors were interviewed separately from their parents. All interviews were transcribed verbatim. Two researchers labelled these transcriptions independently. Discrepancies between coders were negotiated until consensus was reached. This presentation will focus on minors’ perception of the identity, causes, consequences, controllability and timeline of their condition and how this perception might relate to medication use, adaptations in lifestyle and worries. Clear differences in perceived controllability emerged and these appear to be associated with worries.

Author(s) M Levitt & F Tomasini Institution(s) ESRC Centre for Economic & Social Aspects of Genomics (CESAGen), Institute for Advanced Studies, Lancaster University, UK Title Bar-coded children: the views of children and parents on forensic databases The forensic database of England and Wales is the largest in the world with profiles from over 2.7 million people. Samples can be taken without consent, not only from convicted criminals, but, also from all those arrested on suspicion of a recordable offence even if they are not subsequently charged. There has been little public debate on the database, in contrast to other applications of genetic technology, and, in particular, a lack of discussion on the inclusion of children from the age of 10 despite the UN Convention on the Rights of the Child and the debate around children’s consent. Children just above the age of criminal responsibility are the obvious ‘experts’ to consult on this topic along with their parents. Separate focus groups were held with children age 10-12 and a parent, contacted through their schools, and including boys and girls from a range of socio-economic backgrounds and types of school. This paper presents the empirical research findings including views on being a child of that age, responsibility and blame, and looks at the implications for understanding identity and difference. Similar research is being carried out by the Centre for Society and Genomics which will allow comparisons to be made between countries with different policies on forensic databases and different ages of criminal responsibility. This work is being carried out as part of a work package in the Institutionalisation of Ethics in Science Policy (INES) project, 2004-07, funded by the EU under FP6.

SESSION IV-B GENOMICS: ETHICAL CONCEPTS Author(s) C Rehmann-Sutter Institution(s) Unit of Ethics in Biosciences, University of Basel, Switzerland Title Taking Genomes Seriously. Two paradigms of understanding DNA and their ethical implications. Recent literature in molecular and cell biology provides evidence that the background picture of the role of DNA has changed dramatically. Even if biologists still use terms and tropes from the discourse of genetic informationalism (‘programs’, ‘blueprints’, ‘instructions’ etc.) the facts they describe and the concepts they use speak a different language. The function of DNA sequences proved to be highly context-dependent. The same sequence may serve different functions at different places and times in the organism. Microenvironments co-determine which protein is made from one stretch of DNA and for which function they serve. The explanation of such observations in the framework of the overall theory of the ‘genetic program’, which has provided background metaphysics in 20th century biology, is increasingly implausible. Several alternative approaches to explaining the role of DNA have been developed recently. I will present the outline of a philosophy of genomics that combines elements from the Developmental Systems Approach (functional genetic information is a product not a prerequisite of the previous processes) and Structuralism (form of microenvironments provide elements of information). This theoretical choice between the old program view and the new systemic view, however, has significant implications for bioethics. They shall be clarified in three fields: (1) potentiality and the moral status of the embryo; (2) interpretations of presymptomatic genetic tests of cancer predispositions; (3) understanding of the embodied self.

Author(s) N Schwennesen Institution(s) Institute of Public Health, Copenhagen University, Denmark Title From Bioethics to Social Practise: Enacting the Principle of Informed Choice in the Context of First Trimester Prenatal Risk Assessment In the last decades we have witnessed a proliferation of genetic risk knowledge, regulated by bioethical principles such as informed choice, non-directiveness and autonomy. Many studies within STS and medical sociology have been concerned with how such principles work as rhetorical devices demarcating “new genetics” from past eugenic and paternalistic practises. But few studies have investigated the social implications of using such principles in practise. This paper, draws on empirical data from an ethnographic case study on the enactment of the principle of informed choice in the context of first trimester prenatal risk assessment at an ultrasound clinic in Denmark. In Denmark prenatal risk assessment has been offered to all pregnant women, on the basis of informed choice, since September 2004. The risk assessment measures the chance that the foetus is having Down syndrome and works as basis for action about future testing, i.e. the decision about whether or not to proceed with further prenatal tests such as CVS or amniocentesis. On the basis of interviews with pregnant women who are faced with prenatal risk knowledge, I show how they are unwilling to loose the investment in the health professionals as experts. I argue that an ethics of informed choice might serve as a barrier to dialog, rather than as a facilitator and I critically discuss the argument that non-directive information result in greater patient empowerment. 56

Author(s) T Swierstra Institution(s) Department of Philosophy, Faculty of Behavioural Sciences, University of Twente Title From justice to the good life? Genetic research has rapidly progressed from predominantly monogenetic explanations to predominantly multifactorial explanations. However, it is questionable whether this shift in research has been adequately taken up by ethical theory. In my paper I try to determine the extent in which the prevailing moral concerns about genetics still implicitly refer to a monogenetic model of disease. My main claim is that monogenetic explanations typically raise ‘rule-ethical’ concerns, referring to widely shared values (such as freedom/autonomy, equality, respect). Some of these have become largely obsolete with the shift to multifactorial models of explanation. These multifactorial explanations however not only give rise to new ethical questions, but these new questions are often also somewhat different in character. More than monogenetic explanations, multifactorial explanations raise ‘life-ethical’ issues, concerning our self-image, ideal selves, and the (individual/collective) good life. Our imagination of how we (want to) live is fed by images and concepts circulating in our culture, i.e. in literature, plays, films, magazines. Ideally, these fictions display rich, ‘thick’ conceptions and narratives of possible ways of living. Preparing ourselves for developments in genomics thus asks for scientifically well informed narratives and images, in which potential future conceptions and practices are fleshed out in complex and detailed ways.

SESSION IV-C SCIENCE, TECHNOLOGY, SOCIETY & INDUSTRY Author(s) J van der AhĂŠ1, R Verhoeff1, E Moors2 & P Osseweijer1 Institution(s) 1. Department of Biotechnology, Delft University of Technology 2. Department of Innovation Studies, University of Utrecht Title Networks of interaction and their role in the industrial biotechnology innovation process The application of biotechnology in industrial processes offers new possibilities for sustainable production of chemicals, pharmaceuticals, materials and energy. Industrial biotechnology can therefore be seen as a key technology in the transition towards a bio-based economy. Within industrial biotechnology functional genomics provides a basis for a better understanding of metabolic pathways of micro organisms of interest. Functional genomics is also used for the development of novel processes and products. One promising product is genetically modified yeast that is capable of efficiently converting low cost lignocellulosic materials (i.e. agricultural waste, wood, straw etc.) into bio-ethanol. Blended with gasoline bioethanol can be used as a transportation fuel with reduced environmental load. However, previously introduced biotechnological innovations based on genetic modification have repeatedly evoked strong public opposition. One of the major causes of this opposition is a difference in the perceived risk of these innovations in society. New innovations in industrial biotechnology may also suffer from problematic public acceptance. Previous studies have shown that intensified user-producer interaction increases chances for successful innovations. However, the conditions for effective interaction, specifically for the field of functional genomics, remain unclear. The main aim of this research project is to study the interaction between users and producers in industrial biotechnology innovations and to identify conditions for improved interaction. This presentation will focus on the interaction within and beyond the network of stakeholders in the field of lignocellulosic bio-ethanol.

Author(s) M Andreasen Institution(s) Institute of Sociology, University of Copenhagen, Denmark Title Gene patents and the de-differentiation of science and society In this presentation I describe how public ambivalences over the patenting of human genes are driving a de-differentiation of patent expert institutions and society resembling what was seen during the past decades in the case of certain biotech applications: Lay become experts, lay are consulted in policy processes, lay mobilise to gain influence, experts engage in the media to maintain authority, legitimacy and financing â&#x20AC;&#x201C; social scientists and others provide analysis. I argue that this activity reflects that as the patent regime extends to biotech, it is going to deal also with the strong expressions of concern and hope that is characteristic of the public response to biological science and technology. One of the central findings from STS is that when knowledge enters new contexts, experts cannot assume that people external to expert institutions will draw the same conclusions as their originators with regard to its objectivity, significance, its social and moral meaning, policy initiatives needed, etc. Science has lost some of its interpretational authority as witnessed by the presence of such issues as uncertainty, risk and trust as important discourses in

relation to science and technology. Different contexts and interests generate divergent understandings and expectations. Thus, it has become harder for science and technology to maintain that what they do is simply the story about objectivity, rationality, and progress. With regard to biotechnology, the lay public has in various ways mobilised to challenge that vision, many of them ending up not so lay in the process. Representatives from scientific and technological institutions, authorities and funding bodies, on their part, have reacted by, or been provoked or forced to engage with the public. This development has had the consequence that it has become increasingly harder to see science as the closed system that may still be the common sense image to most people. This de-differentiation may be seen as a symptom of a push for increased accountability of science and technology. In the patent controversy, one form of this push is (more or less organised) resistance (e.g. civil disobedience on the part of clinicians), another one consists in fighting the patent system on its own terms (e.g. patient organisations that promote, financially, the publication of patentable data), while a third form is visible in the pursuit of a common understanding (for instance, deliberative methods; companies that do round table talks with stakeholders; attitudes research). I describe the interaction involved in the controversy over human gene patents and discuss the basis of a common understanding.

Author(s) I van Hoyweghen Institution(s) Department of Health Ethics and Philosophy, Faculty of Health Sciences, Maastricht University Title Reinsurance experiments with genetics. Towards a socially robust insurance market? Over the past years, one of the most contentious topics in policy debates on genetics has been the use of genetic testing in private insurance. Confronted with restrictive legislative cross fires, the insurance industry has been triggered to deal proactively with the issue. This paper describes how reinsurance companies currently face the “overflowings” of genetics in their business (Callon, 1998). International reinsurance companies are a major agent in the insurance business. They are the main figure in developing statistics and in stimulating medico-actuarial research. Drawing on fieldwork in two international reinsurance companies, we reflect on how reinsurers experiment in qualifying their products towards genetic risks. One of these strategies is to recur to actuarial devices in order to calculate the effects of genetic risks. However, many issues can be traced with this ‘evidence based underwriting’ strategy. We argue that this actuarial piecemeal engineering might be fruitful, but only in the context of a wider, political approach. Finally, we reflect on how and whether STS insights may cooperate in the process of experimentation and learning towards a ‘socially robust’ insurance market.

SESSION IV-D NEW FORMS OF PUBLIC ENGAGEMENT Author(s) J Broerse, A Roelofsen & J Bunders Institution(s) Athena Institute for Research on Innovation and Communication in Health and Life Sciences, Vrije Universiteit Amsterdam Title Exploring the future: new forms of public engagement in ecological genomics The application of genomics techniques in the field of (soil) ecology is now emerging. The challenge for this new scientific field is to realize its opportunities in a generally accepted way â&#x20AC;&#x201C; i.e. seizing opportunities by means of active reflection upon societal aspects. Engaging lay people in discussions about science and technology has been recognized as an important strategy to meet this challenge, but how to go about it? Deliberative democracy might provide a way to meet this challenge. It aims at expanding the public debate by involving not only stakeholder groups, but also users and the public at large in discussions on complex issues in an interactive way. With respect to the best timing of when to engage the public, it appears that in the early phase of technology development many options are still open for exploration and there are good possibilities for steering. Early public involvement is however challenged by the absence of applications on which users and citizens can develop their own visions from the perspective of their own needs. To overcome this dilemma, we are experimenting with an interactive approach in the field of ecogenomics in which the methodology of vision assessment is integrated. In several focus groups, users (e.g. farmers) and the public at large reflect on future visions of experts and articulate their own needs and visions of the future. In this presentation we present the first findings of the focus groups discussions and discuss these results with respect to approaches applied in other participatory exercises on deliberations on science and technology.

Author(s) R Verhoeff1, E Moors2 & P Osseweijer1 Institution(s) 1 Department of Biotechnology, Delft University of Technology, 2 Department of Innovation Studies, University of Utrecht Title Communicative aspects of functional genomics innovations Functional genomics marks a relatively young and fast developing field of research and promises to release a variety of new innovations related to nutrition, medicine and also in industrial and environmental settings. As biotechnological innovations have suffered from strong public opposition in the past, interaction between the producers and users of these innovations has been suggested to be essential in increasing the success of these innovations in social and economic terms. However, the conditions for effective interaction have so far remained under-explored. Our research focuses on the communicative and ethical aspects of the interaction between producers of functional genomics based innovations within science and industry, and users, i.e. patients and consumers. Our main research question is: What is the content and intensity of the communication activities between users and producers and how can the communication be improved? Much of the discussion around the promise of genomics is still speculative and revolves around its effect on future clinical and industrial practices and everyday life. While functional genomics is still in its early phase, a number of competing expectations for how it might be used coexist amongst scientists. These expectations in turn raise

different social and ethical problems, which provide us with a framework to examine what (public) needs and concerns should be addressed in societal debate. In our paper we identify some key users both within the practice of medicine and within the society at large and we provide conditions for an effective communication strategy that involves these users within the context of functional genomics innovations.

Author(s) N Wright & H Longstaff Institution(s) W. Maurice Young Centre for Applied Ethics, University of British Columbia, Vancouver, Canada Title "I've always considered Canada almost a destructive pacifist country". Public framing of governance in a discussion of salmon genomics\aquaculture. Focus groups have been promoted and critiqued as a 'new' method of engaging 'the public' to govern science. We assess the assumptions about ethics and society in models of democracy and nationhood deployed by focus group members recruited by random digit dialling in Vancouver, Canada. The public event from which the results are taken was the final stage of a three-year project Democracy, Ethics and Genomics: Consultation, Deliberation and Modelling. The participants were asked to discuss salmon genomics/and aquaculture and different approaches to public engagement. In analysing responses there is a need to consider focus groups as a) a way of collecting data b), within the context of Canadian politics and democratic structures and c) as discursive, relational and dynamic. These aspects cannot be resolved or reduced, and should not be ignored. We argue that acknowledgement and the uncovering of empirical evidence as to their nature should form the basis of recommendations from ethicists and social scientists as how to improve the governance of science.

SESSION IV-E BIO-BANKING Author(s) M Mayrhofer Institution(s) University of Vienna, Austria Title Biobanks and New Identity Formations in the Genomic Era France, the AFM, and the Généthon DNA and Cell Bank Biobanks have become a major issue in the fields of life sciences and genomics. Biobanking is far from being a new concept (Cambon-Thomsen 2004), as human biological material (i.e. sculls) has been collected almost ever since. Yet, its significance is indeed "new" insofar as the organised collection of human samples in connection with the facilities of computerisation of personal data poses new challenges, and "reorder life" (Webster & Brown 2004) of the decomposed body. The aim of this paper is twofold: First, to draw attention to a category of biobanks aside the main public and academic attention that focuses on large scale-biobanks. Second, to show identity formations in relation to the concrete example of the Généthon DNA and Cell Bank, which is entirely funded by a patient organisation, the Association Francaise contre les Myopathies (AFM). I will do so by employing a discourse analytical framework (Laclau & Mouffe 2001).

Author(s) F Milanovic Institution(s) Université de Toulouse, France Title Globalisation without standardisation? A point of view through biobanks Evolution in genomics implies that research activities in this domain tend to be more international. This globalisation could not occur without a standardisation of the concerned activities. Standardisation is contributing to make scientific work “do-able” and permits cooperation between different centres and area of research. I purpose to focus on biobanks for studying it. This standardisation is object of regulation through many politics of harmonisation at international levels (like “Public Population Project in Genomics” or “Harmonising population-based biobanks (…)” in European Union). But this movement of legal regulation isn’t the only one concerned. Instruments, guidelines, norms and so on are also engaged in the standardisation of the biobanks. These ones are involving not only policymakers and lawyers but scientists, patients, industrial companies and associations too. My communication will put into relief these different aspects of the standardisation practices in biobanking, participating to the globalisation of genomics.

Author(s) S Hjörleifsson Institution(s) Department of public health and primary health care, University of Bergen, Sweden Title Decoding the genetics debate - Representations of health-related, commercial and ethical aspects of genetics in Icelandic news media The paper is based on a quantitative and qualitative analysis of the news media coverage of genetics in Iceland. The percentage of news media items focusing on business issues increased from 55,6 % in year 2000 to 71,8 % in 2004, and in most items it was either taken for granted or presented as uncontroversial that genetics will improve healthcare without

raising major ethical or governance challenges. Of 1531 items discussing genetics (human or non-human) in major Icelandic news media, 91,6 % were concerned with the commercial company Decode genetics, and although the dominant framing of genetics in Icelandic media included a basic concern about whether Decodeâ&#x20AC;&#x2122;s research will yield the promised results, this concern only arose as an uncertainty about the companyâ&#x20AC;&#x2122;s financial fitness and the evolution of the biotechnology market. Bioethics initiatives and the uncompromising criticism of the Association of Icelanders for Ethics in Science and Medicine were not successful in shaping the generally shared media agenda. These findings are discussed in light of recent ideas in political philosophy under the heading of deliberative democracy. As information about the complexities of genetic prediction and ethical and governance challenges raised by human genetic technologies are inadequately conveyed in Icelandic media, the conditions for informed public deliberation are not fulfilled and genetic research is defined in a way which precludes certain concerns from entering the debate. Although this framing may be influenced by Decodeâ&#x20AC;&#x2122;s predefined interests, notes of caution sounded by Decode spokespersons themselves have not been pursued by the media.

SESSION V-A DNA-LABS FOR CITIZENSHIP Facilitating DNA-labs for secondary schools is a favourite outreach activity of genomics research centres in different countries. Knowing how genomics researchers proceed results in studentâ&#x20AC;&#x2122;s fascination with and a realistic view of genomics research practice. Wishful thinking or evidence-based? The student laboratory in general has been given a central and distinctive role in science education, and science educators have suggested that rich benefits in learning accrue from laboratory activities. On the other hand, science education research puts these expectations into perspective. Engaging in DNA-lab activities will also raise questions about the applications of genomics research in health care, industry, etc. and about its societal implications. These issues need to be addressed in the classroom as well so as to accomplish contemporary science education for citizenship. In current science education there is a strong movement to teach science in meaningful contexts, i.e. starting from its applications and implications, and aiming at empowerment of consumers of genetic technologies and services and citizens of a democratic society. How do DNA-lab initiatives contribute to valuable lessons, i.e. engaging with the social context of genomics in schools? Which learning processes are taking place in terms of concept formation, value formation and acquiring opinion-forming competence? Context and competence are two sides of the same medal and refer to different starting points for bridging the gap between school and real life situations. This session will make an inventory of the ins and outs of DNA-labs, either mobile or fixed, through sharing practical experiences, confronting practice with theory, going back in time, and dwelling upon institutionalisation of temporary DNA-lab facilities in formal and informal education settings. In addition, the session should result in an outline of an educational research agenda.

Author(s) W Veugelers Institution(s) University of Humanistics, Utrecht Title DNA-labs and citizenship education: values in teaching Author(s) A van Gysel Institution(s) VIB, the Flanders Interuniversity Institute for Biotechnology, Gent, Belgium Title School competition Scientists@work: work together with a scientist in his lab! Author(s) K Garber Institution(s) Dialog<>Gentechnik, Vienna, Austria Title Vienna Open Lab: hands on laboratory for the interested public

Author(s) M Knippels Institution(s) Erasmus University, RISBO, Rotterdam Title Designing and evaluating mobile DNA labs in the Netherlands Author(s) A Waarlo Institution(s) Centre for Science and Mathematics Education, Utrecht University Title The student laboratory and the science curriculum: review of science education research

SESSION V-B NEW GENETIC KNOWLEDGE: (MORAL) ISSUES & CONSEQUENCES Author(s) C Chatterton Institution(s) CESAGen, UK Title The Difficulties of Screening for Common Complex Conditions: The Metabolic Syndrome Story Metabolic Syndrome is a newly described condition that encompasses a number of cardiac and diabetes risk factors, which are believed to cluster together to form a distinct disease entity. The condition is a classic example of a so-called ‘common complex condition’, where both genetic and environmental factors play a part, and has become a significant public health problem in many countries. There has been much debate around the underlying causes of the condition, as well as the validity of the various ‘risk factors’ that have been used to create the different ‘diagnostic criteria’ over the years. In April 2005, the International Diabetes Foundation (IDF) launched a new ‘consensus definition’ which was intended to unite the field, but this has also run into significant opposition. Yet Metabolic Syndrome is taken seriously by many countries, which have tried to develop strategies to tackle the condition. In Europe, Finland has been one of the most prominent, by setting up a pilot-screening program. However, in this paper I will argue that any attempt to screen for Metabolic Syndrome will be of little benefit to either the patient or physician, and I intend to develop this critique still further and suggest that ‘preventative screening approaches’ in general are unsuitable for dealing with ‘common complex conditions’. And while Metabolic Syndrome remains a poorly understood and ill-defined condition, there is no rationale to tackle the disorder at the community level until further research is carried out. Therefore this little known condition can act as a useful paradigm for those seeking to develop screening programmes for other equally problematic ‘common complex conditions’.

Author(s) M Gregory & P Boddington Institution(s) CESAGen, Cardiff University, UK Title The Varieties of Sharing: Trajectories of genetic knowledge within the family It is often remarked that genetic information concerns not just one individual but other members of the same family. The shared nature of genetic knowledge has been used as a basis to argue for policy and legal shifts, for example, to make a case for the revision of rules concerning the confidentiality of medical information within the genetic sphere. These arguments rest upon familial or communitarian notions, rather than the individualistic basis which underpins current thinking on medical confidentiality. But what exactly is it to say that genetic information is ‘shared’ with other family members? This paper aims to advance the debate about policy change by clarifying the notion of sharing genetic knowledge within a family, drawing upon interview data from families experiencing haemophilia, as well as upon epistemological analysis. This reveals that there are

many currents to the sharing of this knowledge. Knowledge may admit of various degrees, from what is openly acknowledged to what is more opaque. The epistemological trajectory of genetic knowledge: how, when, where, and by whom knowledge becomes transmitted, is seen to modulate and inform the manner in which sharing occurs. Where sharing occurs within a family context, it may impact upon understandings of blood kinship and relatedness; and family, social and moral values may transform the open or closed nature of knowledge. The context in which transmission of knowledge takes place can likewise have an effect upon its subsequent fate. Implications for policy will be briefly considered.

Author(s) J de Jong Institution(s) Department of Health Care Studies, Section of Health Ethics and Philosophy Faculty of Medicine & Faculty of Health Sciences, Maastricht University Title The promise of genomics for alcoholics: ethical reflections Health care for alcohol addicts in the Netherlands is rapidly changing, both in its organization and its content. Health care for addiction in general is increasingly integrated in Mental Health Care, and the walls between ambulant and clinical care are being broken down. In addition, health care for addicts is professionalized by incorporating new scientific evidence. In particular, research in the field of genomics is expected to change the type of care and cure that is provided to alcoholics. In this paper I would like to reflect upon two interrelated developments and their possible ethical implications. First, new insights in the biology of addiction are likely to reinforce the idea of alcoholism as a brain disease. On the one hand it could reduce the stigmatization of alcoholics and pave the way for new, more effective treatments. On the other it could undermine their self concept as autonomous persons and even lead to fatalism. Secondly, increasing knowledge on the complex nature of the interaction between genes and environment may lead to new genetic tests â&#x20AC;&#x201C; whether predictive or diagnostic. Although these tests possibly contribute to better prevention and treatment, they could also be used as tools to discriminate against individuals with a genetic predisposition for alcoholism. It could even be that individuals are forced to testing and preventive intervention in order to preclude future harm to self or others. How, then, should we evaluate these possible developments from a normative point of view?

SESSION V-C THE ENTRENCHMENT OF GENOMICS RESEARCH IN SOCIETY Author(s) E Aarden Institution(s) Department of Health Ethics and Philosophy, Faculty of Health Sciences, Maastricht University Title Beyond development and use. Introducing genetics into social health care arrangements In the standard view of technology-development the phase of developments precedes and is clearly separated from the phase of use. Depending on the kind of technology the use can be determined by mechanisms in the market or can be the result of political decisions whether and where a new technology may be used. When it comes to medical technologies in social health care arrangements, this view is at the basis of quite some recent initiatives to decide on the provision of care. Several countries have institutions that are supposed to assess new drugs or treatments before they are made available in health service or insurance. However, when taking a closer look at the development and use of new genetic technologies in health care systems, this view does not hold. In this paper I will discuss the development and use of pre-implantation genetic diagnosis in three different health care systems. How are development and use related in England, the Netherlands and Germany? And what does it mean for attempts to decide on health care provision after the development of this technology has taken place? I will argue that this is not simply a question of how science and politics relate, and which roles they have in this case. Rather, several processes are closely related and together they form a practice in which both the technology is developed and included in health care. In this, each country finds its own particular solution.

Author(s) G Lewis Institution(s) Science and Technology Studies Unit (SATSU) Department of Sociology, University of York, UK Title Regulation in the driving seat: transitioning pharmacogenomics to the clinic The introduction of pharmacogenomics to the clinical setting promises far reaching changes in the delivery of medical care, with the advent of targeted treatment and so-called â&#x20AC;&#x2DC;personalised medicineâ&#x20AC;&#x2122; in a number of therapeutic areas. To date, social science research on pharmacogenomics has argued that development is mainly driven by the pharmaceutical industry and related genomics and platform companies (e.g. Webster et al 2004, ESTO 2005). However, an increasingly important role is being played by regulatory agencies, particularly with regard to clinical adoption. Indeed, this paper will argue that regulatory agencies are the key driver in the transition to the clinic, as they seek to encourage genomics-based innovation whilst maintaining their historical task of ensuring drug efficacy and safety. The paper outlines the several factors likely to influence introduction into clinical practice, and then focuses on the growing relationship between drug safety and efficacy and pharmacogenomics in the US and EU, as demonstrated by developments such as the Critical Path

initiative, regulatory guidance, voluntary submission of data, co-development of drug and diagnostic test and the influence of different regulatory frameworks, and debates around the inclusion of PGx data on drug labels. It is based on interviews with FDA and EMEA staff and other fieldwork undertaken for a number of UK-based projects on the clinical development of PGx and a recent ESTO/IPTS study for the European Commission.

Author(s) P Martin Institution(s) Institute for the Study of Genetics Biorisks and Society, University of Nottingham, UK Title Realising the Potential of Genetic Medicine Following the sequencing of the Human Genome great hopes have become associated with the promise of genetics and genomics to transform health service provision and patient care. However, despite a high level of public and private sector support, there is little evidence of major change ‘on the ground’. What is the reason for this situation? This paper will report the findings from a study sponsored by the Royal Pharmaceutical Society, which involved an overview survey of the clinical adoption of a range of genetic and genomic technologies. These included genetic testing, pharmacogenetics, therapeutic proteins, monoclonal antibodies, gene therapy, and stem cells. Conceptually, the project used the idea of entrenchment to map the main factors shaping the process of clinical adoption and to identify the main drivers and barriers to change. This involved assessing scientific and technical progress, the level of commercial activity, and the main ethical and regulatory issues. Different groups of technologies were identified with varying degrees of entrenchment into the clinic. In conclusion, it will be argued that: 1. Expectation have not been realised and that only limited progress has been made in introducing most of these innovations into routine healthcare; 2. This is largely due to technical problems in translating science into technology; 3. A new model of innovation based on incremental technical change rather than a biotechnology ‘revolution’ should be used to guide public policy in this area. This raises important questions about the priority given to genomics and the need for alternative healthcare futures.

SESSION V-D PUBLIC CONSULTATION Author(s) R Ahmad1 & J Wilkin2 Institution(s) 1 Department of Philosophy and the Centre for Applied Ethics, University of British Columbia, Vancouver, Canada; 2 Forest Resources Management, University of British Columbia, Vancouver, Canada Title A Comparative Framework for Understanding Public Acceptance of Genomic Applications Engaging the public is recognized as an integral part of any successful genomic regulatory strategy. However, traditional methods such as surveys and focus groups face the challenge of capturing opinions that may be inadequately informed, particularly in the case of new technologies. At the University of British Columbia, our interdisciplinary research team, NERD (Norms Evolving in Response to Dilemmas), has developed a web-based survey instrument to address some of the challenges faced by traditional modes of public consultation, which can also be used to compare the way the public evaluates genomics in different domains. This paper focuses on the issues surrounding the use of genomics in both human health and salmon. We have found that people tend to be in favour of new technology when it involves their health, but are opposed to it when it involves food sources like salmon. Additionally, our survey offers respondents access to informative advisors for each question. However, there is a troubling trend: people stop seeking advice even before they are asked the most technical and ethically challenging questions. We will discuss how the comparative nature of this analysis enhances NERD as a tool, and also reveals how it can be improved to better engage the public on genomic issues.

Author(s) J de Boer Institution(s) Institute for Environmental Studies, Vrije Universiteit Amsterdam Title Laypeople and their living soil: sense-making of ecological genomics Research into the social aspects of genomics may significantly gain from recent work on the concept of "sense-making", which shows what people do to make things rationally accountable to themselves and others when they are puzzled. One of the lessons provided by the example of genetically modified (GM) foods is that it is extremely important to consider the conditions that stimulate sense-making of a new technology in an early stage of its development. How a new technology is introduced to laypeople may largely determine whether it will generate mindful information processing or fruitless activations of previously held attitudes. As part of the Netherlands multidisciplinary genomics programme, "Assessing the living soil", our social psychological project analyses the conditions that may improve sensemaking of ecological genomics ("ecogenomics"). Given the early stage of technology development in this field, we started by reviewing the literature on sense-making in relation with topics that are highly comparable to ecogenomics. Our objective is to put ecogenomics in a proper socio-cultural context, taking due account of the opposition provoked by GM foods. One of the suggestions to explain people's opposition is that they tend to cultivate the concept of an unmodified nature, especially a pristine type of nature that makes them feel con-

nected with something larger than themselves. To explore whether people do indeed cultivate this connection and whether they are able or willing to revise it we organized a survey among 939 Dutch citizens, which measured their responses to a number of practical applications of ecogenomics.

Author(s) R Borchelt Institution(s) Genetics and Public Policy Center, Johns Hopkins University, Washington, DC, USA Title Public Engagement on Emerging Technologies: The Genetics Town Hall Model Public opinion plays an important role in political debate and policy decision-making. But public opinion research about genetics policy often is criticized for asking individuals to comment on complex technologies and ethical issues about which they may have little knowledge. The Genetics and Public Policy Center at The Johns Hopkins University undertook a deliberative public engagement activity in six American cities during the summer of 2004 using face-to-face discussions complemented by expert minilectures on various topics in the field of reproductive genetic testing. Reproductive genetic testing provides parents more options in having healthy babies; it also raises troubling questions about future uses of testing technologies and thus offers a good topic area for exploring public engagement in an emerging technology. Overall, our experience with this form of public engagement was extremely positive and we believe it helped participants become more informed about these issues: more than 70 percent of participants felt that the forum helped them clarify their own views and more than 90 percent found the forums personally valuable. The most striking was a change in attitude about regulation; support for regulation, especially to ensure safety and accuracy, increased significantly over the course of each Town Hall. The opinion that reproductive genetic testing helps parents make informed reproductive choices did not change significantly, but concern about unregulated technology getting â&#x20AC;&#x2DC;out of controlâ&#x20AC;&#x2122; increased from 72 percent to 85 percent.

SESSION V-E POSITION AND VISIONS OF GENOMICS EXPERTS Author(s) S Hartley1 & S Green2 Institution(s) 1 Genome British Columbia, W. Maurice Young Centre for Applied Ethics, University of British Columbia, Vancouver, Canada 2 Lead, Social Impact Programs, Ontario Genomics Institute, and Bioethicist, University of Toronto Joint Centre for Bioethics, Canada Title Arranged Marriages: An examination of Canada’s interdisciplinary genomics research model Interdisciplinary approaches to science and technology are argued to have the power to augment the democratisation of science and increase public acceptance thereof. Accordingly, Canada recently adopted a new model to integrate social science and humanities research into large-scale genomics and proteomics projects: in 2005, Genome Canada requested that all applications for research funds include plans for actively engaging different disciplines, as appropriate, in addressing the genomics-related ethical, environmental, economic, legal, and social (GE3LS) issues raised by the proposed scientific research. In August, $346 million in public funds were awarded to 33 project teams who met this charge. Collectively, the projects represent a radical shift in the way in which different disciplines interact in genomics research. However, the early-stage interactions of the disciplines in implementing this model suggest that there is much still to learn about shaping and conducting effective interdisciplinary research. This paper traces the nascent stages of development and implementation of Canada’s integrative model in genomics. Canada’s model is compared to multi-disciplinary and interdisciplinary research models in genomics and nanotech in Canada and the US. This comparison draws out the similarities and differences of previous approaches to better understand the strengths and weaknesses of the Canadian model and to assess the barriers to effective interdisciplinary interaction in shared research projects.

Author(s) R Twine Institution(s) CESAGen Flagship Project: Reconfigurations of Human/Animal Relations in Genomics and Beyond (ROAR); CESAGen, Lancaster University, UK Title Working toward ‘Genetic Progress’ – Engaging with Animal Genomics Scientists Within social science analyses of genomics the field of animal genomics remains an under researched area. In an anthropocentric sense the field intersects with the substantial domains of food, health and environment, as well as their related economic, social and ethical elaborations. Moreover, animals are being given a resurgent role in the emergent cast of the ‘bio-economy’, as new sources of bio-capital. Beyond this animals are ethically and socially significant in their own right, having an important place in the social life of many people. Research that involves collaboration and dialogue between social scientists and animal genomics scientists is rarer still. Here I present some preliminary results from semi-structured interviews with scientists working in the agricultural context of animal genomics. The focus is to allow scientists in

this field to speak for themselves about the ethical, social and economic aspects of exploiting genomics knowledge for the enhancement of agricultural animals. How are such issues articulated? To what extent is a boundary placed around animal genomics vis-à-vis other technologies such as genetic modification and transgenics? How do heterogeneous regulatory and ethical environments impact upon current and proposed research? The discourses articulated therein are examined for modes of framing the social and ethical relevance of their own work as well as for intimations of future impacts upon human/animal relations.

Author(s) C Williams, K Ehrich, J Sandall, B Farsides, R Scott & P Braude Institution(s) King’s College London, UK Title Facilitating choice, framing choice: the views of staff working in preimplantation genetic diagnosis In the UK, the Human Fertilisation and Embryology Authority (HFEA) is responsible for licensing preimplantation genetic diagnosis (PGD). To date licences have been issued for the testing of fifty genetic conditions, drawing on the following ethical principles: 1) PGD should be made available only where there is a significant risk of a serious genetic condition being present in the embryo; 2) the perception of the seriousness of the condition by those seeking treatment must be an important factor in the decision making process; 3) the indications for the use of PGD should be consistent with, although not necessarily the same as, current practice in the use of prenatal diagnosis. However, the HFEA is currently seeking public views on widening the scope for PGD, to include susceptibility to later onset cancer conditions such as inherited breast cancer. As the number of conditions which can potentially be tested for rises, the question of how, and indeed what limits should be set is timely. Drawing on 26 interviews and five ethics discussion groups, this paper explores the views of staff working in one PGD/IVF Unit in the UK, focusing on what factors they feel should be considered when such decisions are made. Key themes include ‘drawing lines’ on behalf of others, particularly with the current emphasis on individual reproductive autonomy; and balancing the invasiveness and possible risks of PGD treatment against the ‘seriousness’ of the condition. More broadly, the paper contributes to debates about expectations and control over the health of potential children. Clare Williams, School of Nursing, King’s College London, University of London, England Funded by The Wellcome Trust Biomedical Ethics Programme (grant no: 074935)

POSTER PRESENTATIONS ALPHABETICAL ORDER OF LEAD AUTHOR Author(s) A Bartlett Institution(s) CESAGen, Cardiff University, UK Title Automating Biological Science: philosophical problems and sociological implications Keating, Limoges and Cambrosio argue that molecular biology involves ‘green-fingered’ techniques. They reach the intuitively paradoxical conclusion, that “molecular biology as a whole has been singled out as ripe for automation partly because of the lack of routine.” In order for this process to be successful, tacit knowledge must be ‘flushed’ from the procedures of scientific practice. This being the case, it could be argued that the increasing automation of scientific practice will result in the actions of scientific workers coming to resemble those of machines (after Collins and Kusch). Scientific automation goes beyond the mechanisation of specific laboratory practices to attempts to develop automated systems of discovery. These raise the question; what does it mean when we talk about machines discovering scientific knowledge? Drawing on the work of Collins, I suggest that the answer to this question is capable of enlightening our understanding of the sociology of discovery by humans. If we pull back from the science fiction prospect of the ‘robot scientist’ we find that we nevertheless face the prospect of ‘mechanised’ scientists; cyborg collections of machines, scientists and unambiguous laboratory protocols. Using interview data, I will discuss what scientists, working in both molecular biology and the design and implementation of laboratory automation, understand to be the philosophical and practical obstacles to automation. This paper will suggest possible sociological implications for scientists and scientific creativity resulting from these understandings.

Author(s) M Bhardwaj Institution(s) CESAGen, IAS, Lancaster University, UK Title The ethical challenges of statistical validity in population genetics research: some preliminary thoughts This presentation will raise some of the ethical concerns regarding statistical validity and power of association studies in population genetics research. Biobanks are created with an intention to understand gene-environment interactions, using methodologies applied in genetic epidemiology and association studies and their applications for public health. Although biobanks principally focus on the common but complex conditions, it is the genetic screening of monogenic disorders that has provided potential interaction between genetics and public health. One of the scientific challenges for gene-environment studies at population level for common conditions is that there are very few common genetic variants known to increase the risk of common diseases substantially. Focus on statistical validity becomes important for several reasons, including lack of consistency in genetic case-control studies and therefore reliability of such studies. Especially in the heterogeneous populations, UK for example, a research biobank, the issue of representation is critical for establishing statistical validity of the studies raising concerns of study design and the need for multiple

testing to establish effective statistical power. Secondly, the understanding of “environment” is very different in science and social sciences. Environment can represent all the things that are not genetic, including social, cultural, biological, and lifestyle factors. Correlation of these factors to genes and genetic susceptibility is yet another challenge and this paper would try to raise such issues and their ethical implications for population genetics research.

Author(s) S Detmar1, N Dijkstra1, EJ Hosli1, M Rijnders1, M Verweij2 & NM Nijsingh2 Institution(s) 1 TNO Quality of Life, Leiden 2 Centre of Bio-ethics Utrecht Title Expanding neonatal screening: Health care providers attitudes on desirability and acceptability Advances in genomics will yield new possibilities for genetic testing, early diagnosis and treatment of many diseases. Our research focuses on the possibilities for development and implementation of different types of genetic tests that might be offered in the neonatal phase. The basic question is if and how neonatal genetic screening might be implemented in ways that are tailored to client’s needs, socially acceptable and (morally) justified. In order to answer these questions, empirical and ethical research is combined. This paper gives an overview of the empirical research, investigating health care providers’ attitudes on several examples of existing and potential neonatal screening possibilities. The empirical research question is: What are the views and preferences of health care providers on different (future) options for neonatal genetic screening? Which advantages and drawbacks are mentioned? What are their views on a pro-active approach, possibilities for counselling, moral responsibility, and medicalization? Focus group research was conducted to investigate these questions. In total, 7 focus groups were held, including midwives, (primary care) physicians, and maternity nurses. The results of the focus groups will be presented.

Author(s) N Hallowell, S Cooke, G Crawford, M Parker & A Lucassen Institution(s) Universities of Edinburgh, Oxford and Southampton, UK Title Lay and professional understanding of cancer genetics activities in the UK In the UK, DNA-testing for hereditary cancers and high risk cancer surveillance takes place either as part of research protocols (and thus requires ethical approval) or is offered as an NHS clinical service. The route chosen may depend on arbitrary factors. There is a need to determine the impact that current research governance arrangements have on research and clinical practice in cancer genetics. This multidisciplinary project investigates healthcare professionals’, patients’ and regulators’ understandings of cancer genetics activities within the UK. It looks at how these groups conceive of the research-clinical practice distinction, and aims to identify any perceived ambiguities and practical and/or ethical problems that are generated for the different actors. Semi-structured interviews (n=100) are currently being carried out with 3 groups: healthcare professionals who are involved in cancer genetics research and/or provide a clinical cancer genetics service/refer patients to such a service; patients involved in cancer genetics research (DNA and or clinical studies) and regulators who play a role in the regulation of clinical research or clinical practice.

Author(s) M Harvey Institution(s) ESRC Genomics Policy and Research Forum, The University of Edinburgh, UK Title What should we do about unknown unknowns? Risk, ignorance and debating GM crops Talking about rumoured links between the Iraqi Government and terrorist organisations at a press conference, US Defence Secretary Donald Rumsfeld said “as we know there are known unknowns; there are things we know we know. We also know there are known unknowns … but there are also unknown unknowns”. Apparently bizarre, this free association was ridiculed in the media and received the irreverent ‘Foot in Mouth’ award from The British Plain English Campaign in 2003. But this Rumsfeldian logic was perfectly sensible and contained elements that haunt every policy decision on risky technologies. For any such decision must be based not just on what is known, but also what is not yet known and what cannot be known, and must further accept that there may be hazards that have not even been in one’s ‘survey of possibilities’ (Shackle 1955:58). These unknown unknowns are the stuff of ignorance. From data gathered at the UK GM Nation public debate, this paper shows how scientists and ordinary-folk differently emphasised the known and the unknown, the past and the future, in determining policy toward commercialisation of GM crops. With citizen participation moving toward being an integral part of policy formation and decision-making, a difficultly lies in resolving tensions between contrary technical and citizen positions. I show scientists have the upper hand technically, but citizens have the upper hand politically and ethically and that these domains need to be separated not conflated in policy discussions on GM crops, for example.

Author(s) J Lewis Institution(s) Centre for Social and Economic Aspects for Genomics (CESAGen), Cardiff University, UK Title From Genomic to Post-Genomic data repositories A major objective of the Human Proteome Organisation (HUPO) is to foster global collaborations in proteomics by helping to co-ordinate the developments in data collection, storage and dissemination. The great hope in the field is that developments in bioinformatics will not only help manage the explosion of this generated data but also speed up research. Consequently a large amount of money and research is being put into bioinformatics so that proteomic data can be deposited into public repositories. In this paper I will concentrate on the Proteomics Standards Initiative (PSI) and the General Proteomics Standards (GPS) and the role they are playing in attempting to synchronise data input into these repositories. By focussing on work in standardisation (Bowker and Star) and user configuration (Woolgar) I will endeavour to illustrate how these ‘standards’ initiatives impact upon the research community and will attempt to map the extensive navigable routes a researcher must follow to ‘mine’ data.

Author(s) J Lopez1 & A Robertson2 Institution(s) 1 Department of Sociology, University of Ottawa, Canada 2 Department of Public Health Sciences, University of Toronto, Canada Title The emergence of ELSI discourse in Canada: towards a theoretical understanding This paper will present preliminary findings of a research project, which seeks to understand the factors that have contributed to the dominance of bioethical expertise in the field of human genetics and genomics in Canada. Theoretically informed by the work of STS scholars who have explored the social labour that sustains the legitimacy of competing knowledge claims, this research also draws on the Foucauldian conception of discursive formation, which is well suited to explore the wider social, cultural and political conditions of possibility of formalised knowledges. This framework not only provides a conceptual schema for investigating the rules or relations which make some knowledge claims legitimate through boundary work while excluding others; it also provides a way of locating these rules in a wider social space and political context. Thus, we will show how the emergence of ELSI/ELSA discourse in Canada is situated within the broader discursive context of the concurrently emerging notions of a knowledge economy and a biotechnology imperative. From a genealogical account of the emergence of ELSI/ELSA discourse in Canada, the paper concludes with a discussion of the implications of this analysis for the future possibilities of ELSI/ELSA research. (192 words)

Author(s) C Nolan Institution(s) School of Nursing, Midwifery & Health Systems, Health Sciences Centre, University College Dublin, Ireland; Centre for Economic and Social Aspects of Genomics, Lancaster University, UK Title Media representation on genomics and the implications for public understanding of science The media has a powerful and influential role in framing public understanding and opinion on issues pertaining to genomics. The newspaper remains the main media source through which the public gain such information and therefore the nature of how the issues are represented is crucial. Scientific reporting which provides a broad and balanced view has positive implications as it helps to shape individual understandings, opinions and rational for personal choices. It also influences the publicâ&#x20AC;&#x2122;s ability to evaluate and contribute to genetic technology policy and practices. However, media representation on genomics has been criticised for being inaccurate superficial and exaggerated. Such representation referred to as â&#x20AC;&#x2DC;genohypeâ&#x20AC;&#x2122; can have negative impact as it creates unwarranted hopes or fears which misleads and disempowers society. This paper explores both the positive and negative influence of the media in communication of scientific issues and their implications for public opinion and understanding. In light of the current criticism on genomic coverage, I will present some recommendations for improving scientific communication strategies in the media. By adopting the recommendations I argue that the media could and should play a strategic role in communicating science to the public.

Author(s) C Heeney, M Parker, J Kaye, A Smart & S Gibbons Institution(s) Oxford University, Bath Spa University, UK Title Governing Genetic Databases There has been much controversy around the assembly of large population genetic databases but little attention has been given to smaller research collections developed for specific research projects or digitalized collections of information. The law that applies in this area in the UK is often complex and contradictory. In consequence there is the potential that many genetic databases may be operating unlawfully despite following accepted practice. The purpose of this socio-legal project is to develop model(s) for the governance of human genetic databases in England and Wales. The models will be based on an understanding of practice in regard to genetic databases, an analysis of the current law and sound normative principles. These models will be useful for institutions establishing genetic databases and policy and regulatory bodies such as the new Human Tissue Authority. This socio-legal project will combine traditional sociological and legal research methodologies. Qualitative interviews will be used to contribute to a typology of genetic databases and to establish current practice in regard to their use and management. An analysis of the law and ethical principles that apply to genetic databases in England and Wales will be carried out, as well as an evaluation of theoretical approaches to regulation and their application to genetic databases. In the light of this research and of an analysis of the relationships between regulation and practice revealed by the project, the project team will develop recommendations for appropriate governance of genetic databases.

Author(s) N Ries Institution(s) Health Law Institute, University of Alberta; Faculty of Law, Faculty of Human & Social Development, University of Victoria, Canada Title Ethical, legal & social issues in nutritional genomics Nutritional genomics, commonly termed nutrigenomics, is the latest outgrowth of the Human Genome Project. There is growing research, commercial and public interest in nutrigenomics as researchers seek to understand the relationship between nutrition, genetic predisposition, and disease, companies develop and market genotyping services or food products purportedly tailored for an individualâ&#x20AC;&#x2122;s genetic predispositions, and consumers hunger for new tools to promote and preserve health. Diet is implicated as a factor in various sources of morbidity and mortality, including chronic conditions of heart disease, cancer and diabetes. A recent Lancet study reports that onethird of global cancer deaths result from nine modifiable factors, including low consumption of fruit and vegetables and being overweight or obese. Preliminary research has identified some genetic variation that is linked to differences in how people metabolize nutrients and, in turn, how they respond to various dietary interventions. This paper explores emerging ethical, legal and social issues that arise in the burgeoning field of nutrigenomics. In particular, it address issues related to: conducting research with human subjects to identify genetic factors related to nutrition and disease; implementing

genetic testing for nutrigenomic purposes; development and marketing of functional foods, focusing on legal-regulatory issues related to health claims and labelling; communicating complex messages about the role of genetics in health; integrating nutrigenomic knowledge into public health advice; and allocation of scarce resources to best achieve healthier populations. Ultimately, the paper is concerned with the question of how nutrigenomics can be best developed and applied to enhance public health.

Author(s) D Schuurbiers Institution(s) Centre for Society and Genomics/Working Group on Biotechnology and Society, Delft University of Technology Title Empowering scientists in their societal responsibility This research project aims to empower scientists in the field of industrial genomics in their relations with society. Its objectives are to: - study the new roles and responsibilities of scientists in society - stimulate awareness of the social, philosophical and psychological issues at stake - encourage, support, train and reward scientists in their role as communicators. The relations between science and society have changed drastically over the last decades. Social scientists have called for 'socially robust science', a new mode of science breaching traditional scientific norms and values and proposing a problem-solving, innovation-oriented, transdiciplinary approach in which social accountability and reflexivity play a crucial role. Science has become, in the words of Funtowicz and Ravetz, 'post-normal'. Contrary to the traditional conceptions in which the truth of any statement rests on its accordance with observed fact, scientific decisions have themselves become political. The research aim of this project is to study how this affects scientific culture. How can the theoretical insights from social sciences be incorporated into practical research activities in scientific institutes? The project aims to build bridges between the beta and gamma disciplines. Theoretically it aims to create a clear picture of how the new relations between science and society are to be understood. Practically the project aims to find the conditions for encouraging and supporting Kluyver Centre scientists in their new relations with society including science communication.

Author(s) G Valkenburg Institution(s) Department of Philosophy, University of Twente Title Liberal discourse and genomics Liberal society can be seen as a speech community, among the most important structural features of which is that the prevention of harm and risk, being the only thinkable permit for coercion, is the only criterion in discussions. This is a decisive structure, as reasonable people will generally agree on the prevention of harm, and thus to the consequent coercion. However, it leaves little room for contemplative arguments beyond the notion of harm. Generally, notions of â&#x20AC;&#x153;the good lifeâ&#x20AC;? are excluded from the public debate. This would be fair if we all suffered equally from seeing our personal motivations being ignored. But it turns out that in the liberal speech community, arguments based on religious and contemplative backgrounds are discriminated in favour of those stemming from liberal and socialist backgrounds. It is fancied that imaginations occurring in the genomics debate are indicative of

the suppressed kinds or arguments: while imaginations like the designer baby and alleged practices of eugenics may from a scientific perspective be irrelevant, they do reveal our deeper considerations about humanness, identity, origin and telos. The reception of these considerations is exemplary for the unwillingness of the liberal discourse to deal with them. This research aims at articulating such receptions, as well as the structure behind it that amounts to an unfair treatment of deeper considerations of various sorts. It will contribute to a better understanding of the awkwardness in many debates around difficult questions in general, but predominantly questions raised by genomics and its suspected spin-off practice of genetic enhancement.

Author(s) J Wilkin & P Wood Institution(s) Forest Resources Management Department, University of British Columbia, Vancouver, British Columbia, Canada Title Public Participation in Forest Genomics in British Columbia Forest genomics research could provide Canadians with the information and tools necessary to meet the challenges of climate change. Climate change is predicted to significantly increase a biotic stress in trees and insect epidemics like the current mountain pine beetle epidemic which has devastated forests throughout the province of British Columbia (BC). Forest genomics research is currently underway that could help select resistant trees for propagation and planting in commercial forests. Do Canadians want genomically selected trees in their forests? Previous surveys suggest they might be reluctant. Also, the existence of North American non-governmental groups such as “Stop GM Trees,” and in a related manner, public resistance to GM salmon and salmon aquaculture, strongly imply a need for public participation in the potential use of forest genomics. Public input is essential in BC in particular because 60% of the land is forested, of which, 97% is publicly owned. The forest industry is the economic driver in the province and forests hold environmental and recreational values, representing part of the Canadian national identity. We are planning a series of events to investigate how acceptable this type of forest management is to the public. We will conduct a three-tiered public participation process involving stakeholder interviews, public focus groups, and a multi-stakeholder consensus process on the use of genomics in forestry in BC. We will then ask participants to provide agreed-upon recommendations to government about genomics research and its applications in forestry, thereby ‘democratizing’ this public policy process.

PARALLEL PROGRAMME AUTHOR INDEX Oral Presentations Aarden, Erik Ahé, Joris, van der Ahmad, Rana Andreasen, Morten Arribas-Ayllon, Michael

Session Session Session Session Session

V-C IV-C V-D IV-C IV-A

68 58 70 58 54

Badger, Shirlene Berg, Matthijs, van den Boddington, Paula Boer, Joop, de Boon, Wouter Borchelt, Rick Boulboullé, Jenny Bouwman, Laura Brand, Angela Broerse, Jacqueline

Session I-C Session I-A Session I-C Session V-D Session III-C Session V-D Session I-B Session I-E Plenary 3b Session IV-D

27 23 27 70 49 71 25 32 13 60

Calsbeek, Hiske Cambon, Anne Cassiman, Jean-Jacques Chadwick, Ruth Chatterton, Chris Cornel, Martina Cutter, Marc Anthony

Session I-A 23 Plenary 3b 13 Plenary 3b 13 Plenary 2 11 Session V-B 66 Plen.3b/S.III-A 13, 44 Session I-E 31

Defize, Bas Detmar, Symone Dijkstra, Anne

Plenary 1 Session II-B Session III-D

10 36 50

Egalite, Nathalie El, Carla, van

Session II-D Session III-A

40 44

Featherstone, Katie Felt, Ulrike

Session I-A Plenary 3a

24 12

Garber, Karin Gaskell, George Gertz, Renate Gregory, Maggie Gysel, Ann, van

Session V-A Plenary 2 Session II-E Session V-B Session V-A

64 11 42 66 64

Harmon, Shawn Hartley, Sarah Heeney, Catherine Hjorleifsson, Stefan Hofmans, Daniëlle Hopkins, Michael Hoyweghen, Ine, van

Session Session Session Session Session Session Session

III-D V-E II-A IV-E I-B II-A IV-C

50 72 34 62 25 35 59

Jacobs, Josette Jong, Johan, de Jonge, Bram, de

Session I-D Session V-B Session II-B

29 67 46

Kanellopoulou, Nadja Katan, Martijn Kirejczyk, Marta Kitzinger, Jenny Knippels, Marie Christine Knoppers, Bartha Kollok, Regine Komduur, Rixt Korthals, Michiel

Session II-D Plenary 3a Session III-E Session II-C Session V-A Plenary 1 Session II-A Session I-E Plenary 3a

40 12 52 38 65 10 33 31 12

Lakeman, Phillis Levitt, Mairi Lewis, Graham

Session II-D Session IV-A Session V-C

41 55 68

Mackenbach, Johan Martin, Paul Mayrhofer, Michaela McKellin, William McNally, Ruth Michalopoulos, Tassos Milanovic, Fabien Muller, Michael

Plenary 3b Session V-C Session IV-E Session III-A Session III-C Session II-E Session IV-E Session I-E

13 69 62 45 48 42 62 31

Nelis, Annemiek Nowotny, Helga

Plenary 2 Plenary 2

O'Riordan, Kate Otlowski, Margaret

Session III-E Session III-D

11 11 52 51

PARALLEL PROGRAMME AUTHOR INDEX Oral Presentations Parthasarathy, Shobita Penders, Bart Pieri, Elisa Pin, Renske Plows, Alexandra

Poster Sessions Session Session Session Session Session

II-A II-E II-C II-B I-D

34 43 38 36 29

Rehmann-Sutter, Christoph Session IV-B Rijsingen, Mirjam, van Session I-B

56 26

Schellekens, Maurice Schwennesen, Nete Smets, Ellen Somsen, Han Stephens, Neil Sutrop, Margit Swierstra, Tsjalling

Session III-B Session IV-B Session IV-A Plenary 4 Session III-C Plenary 4 Session IV-B

46 56 54 14 48 14 57

Twine, Richard

Session V-E

Verhoeff, Roald Veugelers, Wiel

Session IV-D Session V-A

60 64

Waarlo, Arend Jan Wainwright, Steven Weele, Cor, van der Weiner, Kate Werrij, Fons Wieringa, Nicolien Willén, Helena Williams, Clare Williams-Jones, Bryn Wilson, Sarah Wright, Nick

Session V-A Session III-E Session I-B Session II-C Plenary 3a Session I-D Session I-C Session V-E Session III-B Session II-B Session IV-D

65 53 25 39 12 30 28 73 47 37 61

Bartlett, Andrew Bhardwaj, Minakshi Detmar, Symone Hallowell, Nina Harvey, Matthew Heeney, Catherine Lewis, Jamie Lopez, José Nolan, Carmel Ries, Nola M Schuurbiers, Daan Valkenburg, Govert Wilkin, Jennifer

74 74 75 75 76 78 76 77 77 78 79 79 80

The organizing committee would like to thank the following organizations for their financial and material support: Netherlands Genomics initiative (NGI) NGI is a taskforce dedicated to strengthening genomicsbased research and business in the Netherlands. Thanks to a clear strategy and substantial resources, currently more than 800 researchers are working within a NGI-initiated consortium or programme. www.genomics.nl

ESRC Genomics Policy Forum The Forum aims to further our understanding of the social and economic aspects of genomics and encourage public and policy debate on how genetic discoveries affect all our lives. www.genomicsforum.ac.uk/

Netherlands Organisation for Scientific Research: Societal Component of Genomics (NWO-MCG). This programme supervised by the Netherlands Genomics Initiative promotes social-scientific, economic, legal and ethical research into the social component of genomics research. www.nwo.nl/MCG

SenterNovem SenterNovem is an agency of the Dutch Ministry of Economic Affairs for implementing policies on innovation, energy and climate, environment and spatial planning. www.senternovem.nl

PROGRAMME IN OVERVIEW

PARALLEL SESS

19th April Koepelzaal

20.00 Theater Adhoc, De Balie

Session I-A Knowledge, perception and attitudes towards genetic testing Cognitive and affective components of risk perception and their influence on the decision to undergo prenatal screening for Down syndrome. Matthijs van den Berg Knowledge and attitudes towards genetic testing, a twoyear follow-up study in patients with asthma, diabetes and cardiovascular diseases. Hiske Calsbeek Psychiatric Genetics: Emerging Personal and Family Implications. Katie Featherstone

20 April 08.30 Registration Plenary 1 09.30 Opening by Hub Zwart Bartha Knoppers Bas Defize 11.15

Coffee break

11.45 Parallel session I 13.15 Lunch break & Poster session

Session II-A

14.15 Parallel session II 15.45 Tea break 16.15 Plenary 2 Round table: Inter-disciplinarity & Ruth Chadwick George Gaskell Helga Nowotny Annemiek Nelis (chair) 19.00 Reception at 20.00 Dinner at

NEMO,

ELSA-research

science museum

Genetic Testing: international learning from national trends The German Perspective. Shared interests and divided responsibilities. Genetics in the German health care system. Regine Kollok Comparing the American/British perspectives. Building Genetic Medicine: Disease, Technology, and the National Politics of Health Care. Shobita Parthasarathy The British Perspective: Evaluation of Genetic Health Services. Catherine Heeney Exploring the convergences and divergences between national systems in the evolution of genetic testing services. Can our past and present experiences tell us something about the future? Michael Hopkins

SIONS I & II Herenzaal

Piet Heinzaal

Garden Room

Prinsen- & Keizerzaal

Session I-B

Session I-C

Session I-D

Session I-E

Imagination -linguistic / visual material Moral debate and visual art: dual coding? Cor van der Weele Tracing interactions: case studies in visual arts and genomics, part 1. Jenny Boulboullé Tracing interactions: case studies in visual arts and genomics, part 2. Daniëlle Hofmans Seeing/Reading Cultures: Imagination and Signification in DNA Portraits. Miriam van Rijsingen

How people frame diseases Demarcations of the obese body. Shirlene Badger Genetics, history and culture: explanations for ill-health amongst Aboriginal Australians. Paula Boddington Development of an endangered identity within a Myotonic Dystrophy family: an exploratory narrative study. Helena Willén

Public(s) and interaction Genomics research on Phytophera infestans: the views of the stakeholders. Josette Jacobs Making sense of emergent and “messy” publics’ interactions with medical genomics: fieldwork as ‘upstream public engagement’. Alexandra Plows From academic to productoriented knowledge: constructing health claims for functional foods. Nicolien Wieringa

Genomics based personalised nutrition; how to handle uncertainties? Scientific basis for individuality: challenges and (un)certainties. Michael Muller Ethical implications of different levels of uncertainty for the application of nutri-genomics. Rixt Komduur Personalised Nutrition and the Governance of Uncertainties. Mark Anthony Cutter Personalized Nutrition: communicating on uncertainties. Laura Bouwman

Session II-B

Session II-C

Session II-D

Session II-E

Public attitudes, public perceptions Parents perceptions towards overweight of their children; the role of genetic susceptibility. Symone Detmar Developments in Dutch public perception of genomics. Renske Pin The public interest? Perspectives on confidentiality & disclosure. Sarah Wilson

Future practices, future lives Origins and Futures: (False) Hopes and (Fraudulent) Promises? Jenny Kitzinger ‘You wonder who would actually be there to question the science’. Elisa Pieri Are we giving up on geneticization? Kate Weiner

Genomics, ethnicity and race Pharmacogenomics and race: an analysis of the views of genomics researchers. Nathalie Egalite Pharmacogenomics and raciallytargeted drugs: a marriage of in-convenience? Nadja Kanellopoulou Are we discriminating Mediterranean people by (not-) offering a screening test for Cystic Fibrosis with low sensitivity for migrants? Phillis Lakeman

Health, food and the environment Let’s clear the air here - Genetic predispositions for pulmonary diseases and global environmental policy. Renate Gertz Plant-genomics-enabled food: A multi-criteria model for the societal assessment of novel foods. Tassos Michalopoulos Have we been looking the wrong way all along? The contested do-ability of individualised nutrition Bart Penders

Key to parallel sessions Genetic Testing / Screening Public Perceptions Public Engagement Entrenchent of Genomics Ethics Nutrigenomics Other

PROGRAMME IN OVERVIEW 21th April

Koepelzaal

08.30 Parallel session III

Session III-A

10.00 Coffee break 10.30

Plenary 3a Genomics & the boundary zone between food and health (Round table) Ulrike Felt Martijn Katan Michiel Korthals Fons Werrij (chair)

Garden Room

Plenary 3b Koepelzaal Genomics & the Future of Public Health (Round table) Angela Brand Anne Cambon-Thomsen Jean-Jacques Cassiman Martina Cornel Johan Mackenbach (chair) 12.00 Lunch break, Poster session & Post-graduate meeting 13.00

Parallel session IV

14.30

Tea break

15.00 Parallel session V

Closing by Ruth Chadwick

Key to parallel sessions Genetic Testing / Screening Public Perceptions Public Engagement Entrenchent of Genomics Ethics Nutrigenomics Other 86

Implementation of genomics in health care Confusion of tongues in Dutch debates on genetic screening. Martina Cornel Genetic screening criteria agenda setting in the Netherlands. Carla van El Genomic Medicine for Hereditary Cancers: the Process of Developing Clinical Guidelines William McKellin

Session IV-A Role and attitude of children Whose autonomy are we preserving?â&#x20AC;&#x2122; Politics of citizenship in counselling childhood genetic testing. Michael Arribas-Ayllon Genetic testing for familial cardiovascular conditions in minors; their perception of the implications of their carrier status. Ellen Smets Bar-coded children: the views of children and parents on forensic databases. Mairi Levitt

Session V-A

16.30 Plenary 4 Genomics & Biobanking Margit Sutrop Han Somsen 17.45

PARALLEL

DNA labs for citizenship DNA-labs and citizenship education: values in teaching. Wiel Veugelers School competition Scientists@work: work together with a scientist in his lab! Ann van Gysel Vienna Open Lab: hands on laboratory for the interested public. Karin Garber Designing and evaluating mobile DNA labs in the Netherlands. Marie Christine Knippels The student laboratory and the science curriculum: review of science education research. Arend Jan Waarlo

SESSIONS III & IV & V Herenzaal

Piet Heinzaal

Garden Room

Prinsen- & Keizerzaal

Session III-B

Session III-C

Session III-D

Session III-E

Sharing data, sharing benefits Compensation, Distribution and Deliberation in Genomics Benefit-Sharing. Bram de Jonge Open source biotechnology: is it feasible? Maurice Schellekens Conflicting Interests, BenefitSharing and University-Industry Relations: A Socio-Ethical Analysis of Commercial Genomics Research. Bryn Williams-Jones

The future of genomics research Beyond the Human Genome Project: Genomics, Proteomics and Systems Biology. Ruth McNally Performances of Authority at the UK Stem Cell Bank Steering Committee. Neil Stephens Orphan drugs and the future of Pharmacogenomics. Wouter Boon

Public perceptions, public consultations Roles of the public in the genomics debate. Anne Dijkstra From Engagement to ReEngagement: The Expression of Values in Patenting Proceedings (What the Salmon Does When it Comes Back Downstream.). Shawn Harmon Protecting human genetic information in Australia: process and outcomes from public consultation. Margaret Otlowski

Cloning and stem cell research. Experts and public in the regulatory debates on embryonic stem cell research: the British and the Dutch debates compared. Marta Kirejczyk Origins and Futures: The Figure of the Clone in the Media Imaginary. Kate O’Riordan Genomic & genetic discourses on human embryonic stem cells: an international ethnography of laboratory science. Steven Wainwright

Session IV B-B

Session IV-C

Session IV-D

Session IV-E

Genomics: ethical concepts Taking Genomes Seriously: Two paradigms of understanding DNA and their ethical implications. Christoph Rehmann-Sutter From Bioethics to Social Practise: Enacting the Principle of Informed Choice in the Context of First Trimester Prenatal Risk Assessment. Nete Schwennesen From justice to the good life? Tsjalling Swierstra

Science, Technology, Society and Industry Networks of interaction and their role in the industrial biotechnology innovation process. Joris van der Ahé Gene patents and the de-differentiation of science and society. Morten Andreasen Reinsurance experiments with genetics. Towards a socially robust insurance market? Ine van Hoyweghen

New forms of public engagement Exploring the future: new forms of public engagement in ecological genomics. Jacqueline Broerse Communicative aspects of functional genomics innovations. Roald Verhoeff “I’ve always considered Canada almost a destructive pacifist country”. Public framing of governance in a discussion of salmon genomics\aquaculture. Nick Wright

Biobanks Biobanks and new identity formations in the genomic era. France, the AFM and the Généthon DNA and Cell Bank. Michaela Mayrhofer Globalisation without standardisation? A point of view through biobanks. Fabien Milanovic Decoding the genetics debate Representations of health-related, commercial and ethical aspects of genetics in Icelandic news media. Stefán Hjörleifsson

Session V-B

Session V-C

Session V-D

Session V-E

New Genetic Knowledge: (moral) issues and consequences The Difficulties of Screening for Common Complex Conditions: The Metabolic Syndrome Story. Chris Chatterton The Varieties of Sharing: Trajectories of genetic knowledge within the family. Maggie Gregory The promise of genomics for alcoholics: ethical reflections. Johan de Jong

The entrenchment of Genomics research in Society Beyond development and use. Introducing genetics into social health care arrangements. Erik Aarden Regulation in the driving seat: transitioning pharmacogenomics to the clinic. Graham Lewis Realising the Potential of Genetic Medicine. Paul Martin

Public Consultation A Comparative Framework for Understanding Public Acceptance of Genomic Applications. Rana Ahmad Laypeople and their living soil: sense-making of ecological genomics. Joop de Boer Public Engagement on emerging technologies: the genetics Town Hall Model. Rick Borchelt

Position and visions of Genomics Experts Arranged Marriages: An examination of Canada’s interdisciplinary genomics research model. Sarah Hartley Working toward ‘Genetic Progress’ – Engaging with Animal Genomics Scientists. Richard Twine Facilitating choice, framing choice: the views of staff working in preimplantation genetic diagnosis. Clare Williams