Conference Report
Workshop One - Bawtry 9th - 11th January 2008
Wednesday 9th January - “Where are we with our methodological findings”
Mark Taylor and David Townend welcomed the participants to the meeting and discussed their overview of the project methodology. Two issues emerged in the discussions:
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Some of the participants had become increasingly worried about undertaking sociological analysis of the stage one data. After full and frank discussion, it was agreed that the purpose of stage one was not to undertake new empirical study; further, it was not possible to undertake comparative analysis between the different materials, as they all came with very different methodologies and perspectives; the purpose was to gather a picture of the expectations that citizens express when they are approached and that the strength in the literature review was to read it not as a scientific literature.
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Delegates from the Eastern states were very concerned about the implications of the labeling of the region as the ‘new member states’ as this implied that the states did not have their rich European cultural heritage. The members were satisfied that this was not the intention of the grouping, and apology was made for the clumsy labeling. A further difficulty was raised about whether there really were discernible cultural differences between the East, North, and South in Europe. It was agreed that this line of enquiry had been fruitless in stage one; the literature had revealed no real differences between the states, and it was not possible to test for this as it had not been a specific issue in the studies surveyed. It was agreed that this line of enquiry should not be taken further.
It was agreed that the Co-ordinators would circulate a revised guidance for the members.
“Drawing out Privacy questions in sociological research”
Dr Hoeyer discussed some of his research with donors in biobanks. His conclusions challenged the usual perceptions of the issues involved in the area, particularly those relating to informed consent.
“Using different sources”: Q&A with Professor Thomas Lemke
Professor Lemke led a session for the members discussing how the different materials that had been found in stage one could be read.
Regional group papers; Research Co-ordinators - Summary of regional findings
The afternoon was spent in the regional groups discussing the regional co-ordinators’ analytical papers. The discussions formed the basis of a revision of the papers by the co-ordinators.
Thursday 10th January - “Plenary session on the previous afternoon’s discussions”
These discussions informed the overall conclusions for Stage One
“Definitions of Biobanks”
Ms Cekanauskaite led a discussion of the definitions posted on the website. The conclusion was very much that the definition of ‘biobank’ is a contested one, very much like that of ‘privacy’. It was agreed by the members that a broad definition should be used in the project so as not to exclude biobanks or a group of issues from the discussion.
“Coordinator’s Report: Findings and Discussion”
Dr Taylor introduced the co-ordinators’ conclusions about how to analyse the material from stage one, and the basic findings from that analysis.
During the afternoon a series of papers were considered by the group to give the broad grounding of stage one.
Each participant in the panel gave a short paper before the discussion was thrown open to a broad discussion in plenary.
Panel One: “Philosophical and Cultural Foundations of Privacy (”Dr. Eugenius Gefenas, Professor João Loureiro, Ms. Salvor Nordal, Dr. Tom Stafford and Professor Judit Sandor)
Panel Two: “When should we be asked to give up privacy interests?” (Dr Sjef Gevers, Dr Corette Ploem and Professor Knut Ruyter)
Friday 11th January - “How do we move on from here?”
The next six months
Mr. David Townend and Dr. Mark Taylor introduced the work for Stage Two of the project.
