Let's talk about GOLD
Analysing the interactions between genome-research(ers) and the public as a learning process
Duration: 02/2004 - 01/2007
Sponsors: bm:bwk
Programmbüro GEN-AU - Genomforschung in Österreich
Project collaborators: Ulrike Felt; Maximilian Fochler; Annina Müller; Michael Strassnig
Project links: http://www.gen-au.at/projekt.jsp?id=37
Goals
The main goals of the project are to:
- develop a setting in which lay-people interested in biomedical research can engage with scientists from this research field for 1 year and develop a more refined picture of this field through different forms of interaction.
- allow for scientists to better understand what kinds of questions lay-people ask about their type of research.
- analyse the ways in which lay-people develop and express their positions towards a broad variety of issues linked to this research in particular social and ethical issues.
- provide a framework in which gender related perceptions can get their place in the debate and can be better understood.
- create a space where potential „users“, can feed back their experiences and expectations into the research process.
- experiment with a method which could foster a better societal integration of science and technology and a more refined public debate in this domain.
- contribute to an enlarged vision of social and ethical issues linked to the field of genome research, which goes beyond the classical purely expert defined perceptions.
Brief description of the project
In recent years we have witnessed an increase in public controversies concerning issues of science and technology in particular linked to questions of genetics. Trust in existing societal mechanisms of handling the relation of science, technology and society seems broken. The purely expert oriented models of dealing with social and ethical issues in these domains start to be questioned.
As an answer to the apparent loss of public trust both national governments but also actors on the EU level try to implement new mechanisms of science-society interactions in order to assure a better integration of science and technology into society, to make innovations possible and to allow for a more fine-grained debate with a lower degree of polarisation.
However in order to render the relationship between this scientific domain and society more stable a better understanding of the way lay-people position themselves towards this kind of research, how they perceive the social and ethical issues that are at stake and in particular how gender and the fact of being directly concerned impinges upon this, is needed.
To reach this aim the project proposes to follow the Swiss model of “Round Tables”: Over a period of 1 year a group of lay-people (approx. 12) will meet regularly with researchers working on a project in the area of genomics, in our case the project GOLD (Genomics of Lipid-Associated Disorders) and discuss different aspects of this research under the guidance of a moderator. The researchers present their work und inform about the way they plan to proceed, the questions they face and what they see as potential impacts of their research. It is also planned to add lab-visits, invite medical doctors who actually deal with patients having these illnesses as well as professional ethicists.
The aim of this setting is to allow for mutual learning, for expressing expectations, hopes and fears with regard to the research topic. It is a process in which relationship of trust can be fostered and a place where new kinds of thoughts about the possibilities and constraints of this type of research for the individual citizens, but also for the collective can be developed.
Milestones and anticipated benefits
Phase 1 (months 1-8) will deliver an analysis of the state-of-the-art in theoretical and methodological reflections concerning the interaction of genomic research and the public as well as a detailed plan for the central empirical phase. During phase 2 we will organise seven round table meetings and two series of qualitative interviews with panel members and scientists. Transcriptions of about 30 interviews and 7 round-table meetings will be the deliverables (months 9-20). Phase 3 will be devoted to a content analysis of all data-sets (months 21-26). The writing of the final report and the dissemination of results will be the focus of phase 4 (months 27-30).
Project partners
IFZ - Interuniversitäres Forschungszentrum für Technik, Arbeit und Kultur, Graz
GOLD - Genomics of Lipid-associated Disorders
International Advisory Board
Prof. Brian Wynne, CESAGen, Lancaster University
Dr. Priska Gisler, ETH Zürich
Prof. Dr Silke Schicktanz, Universität Göttingen
International Advisory Board:
Prof. Brian Wynne, CESAGen, Lancaster University
Dr. Priska Gisler, ETH Zürich
Prof. Dr Silke Schicktanz, Universität Göttingen