Focusing on the interactions between people suffering from neuromuscular diseases and their wheelchairs, the author raises the question of action: how is action made possible for people suffering from neuromuscular diseases? Starting with actor-network theory, the author shows that action not only results from distribution and delegation to heterogeneous entities but emerges from hard and lengthy work that makes the relation between them possible and transforms the entities involved. The author describes this work, called the process of adjustment, as work (...) on the links making a person, his or her body, and his or her world. Through this work, new possibilities of action emerge for the person, but also new abilities; the person’s identity is transformed and shaped. This analysis leads to a particular conception of the person as made up through his or her relations to other entities. (shrink)

Patient organizations are increasingly involved in national and international bioethical debates and health policy deliberations. In order to examine how and to what extent cultural factors and organizational contexts influence the positions of patient organizations, this study compares the positions of German and Israeli patient organizations (POs) on issues related to end-of-life medical care. We draw on a qualitative pilot study of thirteen POs, using as a unit of analysis pairs comprised of one German PO and one Israeli PO that (...) were matched on the basis of organizational category. Bioethical positions that emanated from the interviews concerned advance directives—general views, recent legal framework, and formalization; as well as active and passive euthanasia, withholding and withdrawing of treatment, and physician-assisted suicide. In addition to the unifying, within-country impact of cultural factors, we found that constituency-based organizations and partner organizations in both countries often share common views, whereas disease-based support organizations have very heterogeneous positions. We conclude by discussing how organizational contexts provide a source of uniformity as well as diversity in the positions of POs. (shrink)

This paper explores how scientists perceive public engagement initiatives. By drawing on interviews with nanoscientists, it analyzes how researchers imagine science–society interactions in an early phase of technological development. More specifically, the paper inquires into the implicit framings of citizens, of scientists, and of the public in scientists’ discourses. It identifies four different models of how nanoscientists understand public engagement which are described as educational, paternalistic, elitist, and economistic. These models are contrasted with the dialog model of public engagement promoted (...) by social scientists and policymakers. The paper asks if and in what ways participatory discourses and practices feed back into scientists’ understandings, thus co-producing public discourses and science. (shrink)

In this paper, we explore and discuss the use of the concept of being affected in biomedical decision making processes in Germany. The corresponding German term ‘Betroffenheit’ characterizes on the one hand a relation between a state of affairs and a person and on the other an emotional reaction that involves feelings like concern and empathy with the suffering of others. An example for the increasing relevance of being affected is the postulation of the participation of people with disabilities and (...) chronic or acute diseases in the discourse, as partly realized in the German National Ethics Council or the Federal Joint Committee. Nevertheless, not only on the political level, the resistance against the participation of affected people is still strong; the academic debate seems to be cross-grained, too. Against this background, we explore the meaning and argumentative role of the concept of being affected as it is used by affected and lay people themselves. Our analysis is based on four focus group discussions in which lay people, patients and relatives of patients discuss their attitudes towards biomedical interventions such as organ transplantation and genetic testing. This setting allows for a comparison of how affected and non-affected people are concerned and deliberate about medical opportunities, but also of how they position themselves as being affected or non-affected with respect to (scientific) knowledge and morality. On this basis, we discuss the normative relevance of being affected for the justification of political participation. (shrink)