Challenges of Biomedicine : Challenges of Biomedicine

1st Project Year

Work performed:

CoB’s first project year comprised the major part of the project’s qualitative empirical data recording phase. Thus it provides the basis for all following research steps. Since the data collected within the framework of the project is used to investigate local specificities with respect to national social, scientific and legal conditions, but also for comparative analysis, differentiated research on literature, grey publications and internet comments had to be combined with special qualitative empirical methods in order to obtain context-sensitive information. Therefore, the two main objectives in this period were:

first, to give an overview on the state of the art of legal and the socio-economic relevance and significance of the focused biomedical technologies in Austria, Cyprus, Germany, France, the Netherlands, and Sweden (workpackage 1).
second, to implement focus groups with lay people, patients and professionals in Austria, Cyprus, Germany, France, the Netherlands, and Sweden. Topics are transplantation medicine, genetic testing and participation (workpackage 2).

Results of first year of research:

In workpackage 1, six preliminary reports on the state of the art of the legal, socio-economic and political-participatory contexts of biomedicine with focus on genetic testing and transplantation medicine on a national level have been worked out by the teams in Austria, Cyprus, Germany, France, the Netherlands, and Sweden. The information given refers to a timeframe of ten years (1995-2005) and was gathered mainly by desk based studies (recherché on official statements, scientific literature, grey publications, internet domains), combined with qualitative empirical research (selective informal interviews with experts in the different thematic fields). The results of the research were compiled in State of the Art Reports of 20 to 30 pages. These reports will be updated during the whole project duration and provide a background for the discussion.

Each State of the Art Report provides information on the national level with respect to the following topics:

The legal and regulatory framework of biomedicine. This section comprises an overview on the “official” laws and regulations, but also on more informal ways of regulation (e.g. implementation and application of laws in concrete practical contexts; ethical guidelines).
The institutional structure in the field of governance of biomedicine. It includes an organigram covering the responsibilities, competences and functions in the institutional context of the establishment and regulation of biomedical research and technology.
The main actors in the field of governance of biomedicine (e.g. politicians, scientists, the public, ethics committees, stakeholders, physician groups, and patient or disabled groups). Special foci are the role of companies and their (financial) involvement in biomedical research and NGOs and the legitimatory basis of their claims.
The academic debate on biomedicine including ethics and social science. Another focus is the description of the biomedical research landscape (major research programs and projects, sources and channels of research funding).
The media and the public discourse on biomedicine, providing an overview on the main topics in the current public debate (headlines), important discourse events (e.g. public scandals).
The role of public participation, providing an overview on the participatory culture in the respective countries in general and concentrates on the specific institutions and ways of participation in the governance of biomedicine.
A bibliography, including relevant literature, grey publications and, where possible, links to important internet sources.

For further information on the Austrian State of the Art Report, please contact:
peter.winkler@univie.ac.at

For further information on the Cypriot State of the Art Report, please contact:
vanast@-cing.ac.cy

For further information on the French State of the Art Report, please contact:
Anne.Masseran@univ-nancy2.fr

For further information on the German State of the Art Report, please contact:
Silke.Schicktanz@medizin.uni-goettingen.de

For further information on the Dutch State of the Art Report, please contact:
Marcus.Duewell@phil.uu.nl

For further information on the Swedish State of the Art Report, please contact:
Helena.Rocklinsberg@teol.lu.se

For the empirical data recording in workpackage 2, the consortium decided to design and organise focus group discussions, a widely established social scientific method. This method is useful for recording attitudes and arguments raised by the participants involved in a situation of group discussion and exchange of arguments.
In six European countries, Austria, Cyprus, France, Germany, the Netherlands, and Sweden, four focus groups on transplantation medicine, genetic testing and governance / participation in the field of biomedicine were implemented.
The thematic focus of the group discussions was narrowed down to organ transplantation and post-natal genetic testing in a medical environment. Issues on participation and governance were raised in each of the four focus groups so that a very broad picture would be available.
The groups were composed of lay people and affected people, whereby affectedness was defined as having personal contact to the technology discussed either as a patient, a patient’s relative or a professional. Each focus group consists of 6 to 10 persons. For the recruitment of the participants, different strategies were worked out. The focus groups were facilitated by the researchers. It was recorded and documented (the subjects were anonymised) and then translated into English, so that the material is available for each research partner in the consortium.
With respect to cross-cutting comparative research in a later phase the consortium established binding research guidelines for

recruitment of participants, information and selection
moderation along a binding questionnaire
guidelines for transcription and translation.

As a result, the consortium obtains 24 transcripts in English, which are

6 focus groups with lay people on transplantation medicine, one of each from Austria, Cyprus, France, Germany, the Netherlands, and Sweden.
6 focus groups with patients, relatives and professionals on transplantation medicine, one of each from Austria, Cyprus, France, Germany, the Netherlands, and Sweden.
6 focus groups with lay people on genetic testing, one of each from Austria, Cyprus, France, Germany, the Netherlands, and Sweden.
6 focus groups with patients, relatives and professionals on genetic testing, one of each from Austria, Cyprus, France, Germany, the Netherlands, and Sweden.

2nd Project Year

Work performed:

CoB’s second reporting period (months 12-24) comprises

the conduction and interpretation of selective ethnographic interviews in three partner countries Cyprus, Germany and Sweden aiming at an vertical extension of the data gathered in the focus groups and deepening topics of concern to the overall research agenda of the project (workpackage 3),
the local analysis of the main lines of argumentation and national specificities present in the focus group data conducted in the six partner countries Austria, Cyprus, France, Germany, the Netherlands, and Sweden (workpackage 4),
the theoretical framing and specification of research foci for the cross-national comparative analysis of the focus group and interview data along the topical fields of medicalisation and geneticisation (workpackage 5), public understanding of science, governance and participation (workpackage 6) as well as bioethics (workpackage 7).

Results of second year of research:

In workpackage 3, each of the German, Cypriot and Swedish partners conducted 10 ethnographic interviews with lay and affected people mainly recruited from the local focus groups. The interviews were transcribed, translated into English and transferred in the qualitative data analysis software Atlas.ti. Bottom up coding of the 30 interviews was performed by the workpackage partners. According to the contract, main objective consisted especially in the close investigation and analysis of

individuals’ understandings of science and biomedicine,
their views and visions of regulation and participation,
ideas of body, health and illness, and
local specificities to be defined on the basis of State of the Art Reports (workpackage 1) and preliminary findings from focus groups (workpackage 4).

Main research findings are lined out in the Deliverable No. 3 Report on the selective interviews.

For further information on the Deliverable No. 3 Report on the selective interviews, please contact:
stefan.beck@rz.hu-berlin.de

In workpackage 4, six Local Reports were produced on the basis of the local analysis of the 24 focus groups conducted in Austria, Cyprus, Germany, France, the Netherlands and Sweden.
Before analysing the data, all focus groups have been transcribed, translated into English and transferred into the qualitative data analysis software Atlas.ti. The interpretation of the local focus group data was performed along a predefined set of codes, which was developed on the basis of main research questions of the project.
The final reports, which comprise between 70 and 150 pages, are structured into two main chapters: In a first contextual chapter each Local Report provides information on the

local recruitment and selection process of the focus groups,
the focus group setting, speaker profiles and
the group dynamics.

In a second analytical chapter, the main lines of argumentation referring to five topical fields were defined. The topics discussed are

the participants’ approach to postnatal genetic testing and organ transplantation,
personal decision making and coping manners,
the human body as a cultural entity,
organisation, governance and participation, as well as
gender, religion and cultural values.

Discussing each topic, interpretative emphasis was placed on the definition of hypotheses on correlations between participants’ argumentations and the specific national cultural, organisational, legal and political background lined out in the State of the Art Reports. In a final conclusion each Local Report provides a summary of the central findings and lines out working hypotheses of further research interest for the workpackages 5, 6 and 7.

For further information on the Austrian Local Report, please contact:
peter.winkler@univie.ac.at

For further information on the Cypriot Local Report, please contact:
vanast@-cing.ac.cy

For further information on the French Local Report, please contact:
Anne.Masseran@univ-nancy2.fr

For further information on the German Local Report, please contact:
Silke.Schicktanz@medizin.uni-goettingen.de

For further information on the Dutch Local Report, please contact:
Marcus.Duewell@phil.uu.nl

For further information on the Swedish Local Report, please contact:
Susanne.Lundin@etn.lu.se

In the workpackages 5, 6 and 7, input papers framing the theoretical background of the sub-projects were produced, discussed within the consortium and commented by the external experts Prof. Dr. Gesa Lindemann and Prof. Dr. Mike Michael at the 5th project meeting in Lund, Sweden. On the basis of these discussions and the expert inputs, for each workpackage concrete research foci, respective working teams and selective data of reference were defined.

In workpackage 5 on geneticisation and medicalisation

teams from Latvia, France and Goettingen, Germany, will analyse in a first research focus the focus group participants’ perception of power constellations and actor networks in the field of organ transplantation and genetic testing.
In a second focus the partners of Leeds, UK, and Goettingen, Germany, will explore the focus group participants’ perceptions of rights, obligations and other moral concepts in relation both to the individual and public health care systems.
In a third focus the anthropologist team from Berlin, Germany, will deal with patterned understandings of science and the role medical knowledge plays in disease management.

In workpackage 6 on public understanding of science, governance and participation

the Latvian partner will perform an analysis on the genome project and organ transplantation in Latvia.
In a second research focus the Austrian partners will investigate the relation between people’s understanding of biomedical technologies and their respective concepts of agency and choice.
In another research focus the Austrian partners will trace the question what role medical and non medical knowledge and information play as resources for the participants’ positioning in selected focus groups.
In a fourth focus the anthropologist team from Berlin, Germany, will deal with forms and trends of participation represented in selected interviews and focus groups.

In workpackage 7 on bioethics

In a first research focus the Dutch ethicist team will reflect on a theoretical level the relation between empirical research and bioethics.
In a second research focus the ethicist teams from Sweden and the Netherlands will empirically trace the question what kind of influence religious backgrounds have on participants’ decision making processes in the focus groups.
In a third focus the ethicist teams from Goettingen, Germany, and the Netherlands will trace the question in how far body related values as normative frameworks influence the participants approach to the two technologies discussed.