EGENIS - Stem Cells Research in Context
Abstract
EGENIS' contribution to the Stem Cell CBAR Initiative consists of training workshops, one major research project and two related PhD projects. It builds on our expertise in stem cell governance and science to make a detailed comparative study of specific aspects of the mutual shaping of regulation, ethics, and science in two different countries.
Two Research Assistants will spend two years making an in-depth comparison of the interrelationship between national governance, societal evaluation and the national structures of stem cell science in the UK and in Germany . Both countries had implemented different tools of governance to control or prohibit embryonic research in 1990. Although they both equally endorsed stem cell science in 1999, because of this difference in regulation their support took very different routes: The UK being clearly in favour of embryonic stem cell research and Germany being just as decisively against it but in favour of all research not using human embryos. Stem cell research is the extraordinary case of a global science project developing with high speed but restricted in many ways for dominantly moral reasons.
Science policies currently operate without a sufficient understanding of the mutual interaction of regulation, public understanding and attitudes, funding situations, governance practices, cultural change and scientific progress in a globalizing world. This project on stem cell research in context aims to contribute to filling this gap in knowledge through:
1) Direct comparison of different laboratories and research institutions in the UK and in Germany .
2) Study of the translation processes from biological and tissue engineering science into medical application.
3) In depth investigation of the 'external' factors shaping local and national research strategies and practices (law and governance policies, funding policies, ethical and public concerns).
Two Research Assistants and a PhD student will work closely together as a research team and acquire detailed knowledge of stem cell research in biological and medical settings and learn to understand and interpret biomedical innovation in its social environment. They will practice empirical sociological research methods and become experienced in the interpretation of a variety of data on scientific objects and regulation and funding policies.
EGENIS offers extensive experience in research on the regulation of biomedical research. It provides unparalleled expertise in conceptual analysis of contemporary biological developments (Dupré, Barnes et al.) and with a special focus on international comparison and interdisciplinary research (Hauskeller, Nowenstein, Klotz). The Co-Investigator has both an internationally acknowledged research profile in stem cell governance and contacts with scientists in the different countries who have agreed to collaborate with this project. Research and training will also benefit from the workshops EGENIS and other Centres are offering and from the established contacts EGENIS has with the wider UK social science research community in the area.
Project: Stem Cell Research in Context. A Comparative Study on the Dynamic Relationship Between Science, Medicine, and Society
The lead question is: How do specific sociopolitical dynamics and professional cultures shape the conduct of stem cell research and affect the evolution of stem cell science and medicine as an integrated field? Drawing on published and ongoing research in EGENIS (Hauskeller, Nowenstein) the project aims to describe national research situations and the structuring effects of science policies and the related evaluation and societal status of stem cell research agendas. The project will be conducted in close collaboration with scientific units of stem cell research in the two countries and the wider social science and ethics communities. Multisite research is necessary if only because stem cell science is not a homogenous field. It is rather an umbrella name for a variety of studies with diverse objects, objectives and practices.
1) Our first research aim is to produce ethnographic descriptive materials through observation of stem cell research in six laboratories in two countries. We shall follow the cells from the source of extraction (embryo, foetus, umbilical cord, patient) on their journey through the laboratory to their final or temporary destination: a patient’s body or a tissue storage facility. This close exploration will provide data for an account of the attitudes of all staff involved in the laboratory toward their objects and their roles. The multidisciplinarity present in the stem cell research groups in the UK and in Germany (with distinct patterns of dominance of biology and medicine) will be revealed through multisite observation and this will show how disciplinary perspectives influence the styles of work and routine perceptions in the laboratories. We will map the variety and similarity in research practices in relation to object types and cultural environments and find out to what extent nationally specific regulations are reflected in the attitudes and evaluations of staff involved. The common assumption that science practitioners and lay people differ in their perceptions of research objects and aims (Hauskeller 2000) will thus be put to the test.
2) The second aim is explore the ways in which scientists relate to the regulatory practices governing their field (law, clinical, ethical, tissuebanking requirements, public recognition for their work, etc.). The different actors an d p articipants in stem cell research in both countries are affected by the relative moral importance their work has been credited with. Their research strategies and situations are immediately dependent upon general ethical approval. We will interview ‘embryonic’ and ‘adult’ stem cell researchers and affiliated staff concerning their perception of the role of regulation and evaluation. We will analyse the transcript data in multiple comparative dimensions including: (a) differences according to the type of cells people work with; (b) specificities in regard to the explicit aims of the specific research project and dominance of a medical or of a scientific approach; (c) the national contexts with respect to economic, legal and evaluative conditions of the work; (d) differences regarding levels of education and responsibility for the direction of the research. The analysis of the empirical data of 1) and 2) will allow us to give a detailed account of the mutual shaping of regulation, ethics and science in two national contexts.
3) The third aim is to give a precise comparative account of the ways in which national and EU regulation, economics and national ethical debates shape the specific research agendas differently in both countries. The specific scientific successes and obstacles will also be included in the picture of national research communities.
4) The fourth aim, conversely, is to explore the influence of global scientific advances on the national research and policy agendas in both Germany and the UK . Analysing through this example the complex interrelationship between mechanisms of governance and their implementation on the one hand and the progress of science on the other, will further our understanding of the place of science in current societal structures and the impact of regulation on it.
Doctoral Studentship (3 years): Translation of Stem Cell Knowledge, Concepts and Techniques into Novel Medical Applications and How These Challenge Existing Concepts of Heart Disease and Cardiac Medicine.
Supervisor: Prof John Dupre
Summary
In close connection with the main research project we aim to train a PhD student, who will follow the first double blind clinical trials in stem cell heart therapy in the UK and observe how the procedures and practices involved unfold. A main research aim will be to document the shifts in the conceptualisation of the pathology that come with the new treatment options. Repair of the heart has often been understood as a mechanical task. With the ‘selfrepair’ inherent in stem cell therapies, particularly in the current autologous repair mode, this kind of mechanistic understanding is changing. A closely related question to be addressed is: What classifications of symptoms and of patients are used in these double blind trials?
This project will complement ongoing EGENIS research into the shifting perception of cardiovascular disease in diagnosis and patient perception (Saukko and Hall). The student will work in close collaboration with the British Collaborative Group on Stem Cells and Repair of the Heart, of which the CoInvestigator has been a member since the Group was established in 2004.
Contacts
Dr Christine Hauskeller Co-PI
Outputs
Poster
http://www.york.ac.uk/res/sci/posters/egenis.pdf
Website
Workshops
22-25 January 2007
EGENIS training workshop on international stem cell regulation
NEW Programme now available here - doc
For further information contact c.hauskeller@exeter.ac.uk
Papers
Grießler, E., Hauskeller, C., Lehner, D., Metzler, I., Pichelstorfer,A., Szyma, A. (2008) Stammzellen und Embryonenschutz, Status quo, Rechtsvergleich und öffentliche Debatte am Beispiel ausgewählter europäischer Staaten, Report for Austrian Bioethics Kommission
Harrington, J. and Hauskeller, C. (2008) The death of the Frankenbunny? The Newsletter of the ESRC Genomics Network, Issue 7, March. Pages: 15-17
Hescheler, J. and Hauskeller, C (2008) 'Von der Grundlagenforschung in die Klinik: Probleme und Möglichkeiten der Stammzelltherapie', Bundesgesundheitsblatt, Special Issue on Stem Cell Research, Summer 2008
Krones, T., Samusch, T., Weber, S., Budiner, I., Busch, A., Knappertsbusch, F. and Schlüter, E., Hauskeller, C., (2008) 'Brain Drain in der Stammzellforschung? Erste Ergebnisse einer Befragung von Wissenschaftlern zur Lage der Stammzellforschung in Deutschland', Invited expert paper for Bundesgesundheitsblatt, Special Issue on Stem Cell Research, Summer 2008
Hauskeller, C (forthcoming) ‘Moral Imperialism - stem cell regulation as test case for the rule of global ethics over local values’. In A. V. Campbell and B. Capps (Eds) Bioethics and the Global Politics of Stem Cell Science: Medical Applications in a Pluralistic World, London: Imperial College Press and World Scientific Publishing
Samusch, T. Budiner, I. Weber, S., Busch, A., Knappertsbusch, F., Schlüter, E., Hauskeller, C., Krones, T. (forthcoming) ‚Ansichten von in Deutschland arbeitenden Wissenschaftlern in der Stammzellforschung zur Lage der Stammzellforschung in Deutschland’ in Jahrbuch für Wissenschaft und Ethik, Vol. 13, 2008
Submitted for publication
Weber, S, Wilson-Kovacs, D, and Hauskeller, C. “The Regulation of Autologous Stem Cell Therapies: Comparing the UK and Germany”, Conference Proceedings of Ethical and Legal Aspects of Research with Human Tissue in Europe, First International Conference of the Tiss. EU Project, Goettingen, Germany, June 26-28, 2008
In preparation
Wilson-Kovacs, D., Weber, S., Hauskeller, C. “Autologous Stem Cell Clinical Trials in Heart Repair: Regulation as Interactional Accomplishment”
Hauskeller, C. and Harrington J. “Added to the mix: Species identity on a techno scale”
Weber, S., Wilson-Kovacs, D., and Hauskeller, C. “Cultural Styles: Classification Practices in the Regulation of Stem Cell Therapies”
Presentations
April 2008 Hauskeller, C and Harrington, J. “Knowledge Criteria in Stem Cell Science”, Plenary Speech at the National Stem Cell Network Inaugural Scientific Conference, Edinburgh, April 10
April 2008 Weber, S., Wilson-Kovacs, D., Harrington J. and Liverani, M. presented posters at the National Stem Cell Network Inaugural Scientific Conference, Edinburgh, April 10
April 2008 Wilson-Kovacs, D., Weber, S., and Hauskeller, C. “The regulation of autologous stem cell clinical trials”, Egenis, University of Exeter, April 15
April 2008 Hauskeller, C. “Science policy effects on scientific creativity: German and Japanese innovations in pluripotency”, Genomics and Society: Setting the Agenda, International Conference Centre for Society and Genomics and EGN-Network, Amsterdam, April 17-18
April 2008 Wilson-Kovacs, D., Weber S., and Hauskeller, C. “Stem Cell Research Agendas: Regulation as Culture in Practice”, Genomics and Society: Setting the Agenda, International Conference Centre for Society and Genomics and EGN-Network, Amsterdam, April 17-18
April, 2008 Harrington, J. In-house presentation of research to date. 28 th of April, Egenis, University of Exeter
June, 2008 Weber, S., Wilson-Kovacs, D., and Hauskeller, C. “The Regulation of Autologous Stem Cell Therapies: Comparing the UK and Germany”, Ethical and Legal Aspects of Research with Human Tissue in Europe, First International Conference of the Tiss. EU Project, Goettingen, Germany, June 26-28
July 2008 Hauskeller, C “Molecular ultimacy? Changing understandings of pluripotency”, Cellular Spaces: A CBAR Workshop on Cells, Egenis, University of Exeter, June 30-July 1
July 2008 Weber, S. and Wilson-Kovacs, D. “Splitting cells: autologous stem cell practices in Germany and the UK” Cellular Spaces: A CBAR Workshop on Cells, Egenis, University of Exeter, June 30-July 1
August 2008 Wilson-Kovacs, D., Weber, S., and Hauskeller, C. “Recycling Cells and Making Cakes in Britain and Germany: The Regulatory Shaping of Stem Cell Applications in Cardiac Repair”, Acting with Science, Technology and Medicine, 4S/EASST Annual Meeting, Rotterdam, The Netherlands, August 20-23, 2008
Sep. 2008 Wilson-Kovacs, D., Harrington, J., Weber, S., and Hauskeller, C. ‘Making Sense of Clinical Trials Using Autologous Stem Cells for Heart Repair’, British Sociological Association Medical Sociology Annual Conference 2008, Sussex, September 4-6