In the latter half of the 20th century, Western medicine moved death from the home to the hospital. As a result, the process of dying seems to have lost its spiritual dimension, and become a matter of prolonging material life by means of medical technology. The novel quandaries that arose led in turn to medico-legal regulation. This paper describes the recent regulation of dying in Israel under its Dying Patient Law, 2005. The Law recognizes advance directives in principle, but limits (...) their effect and form through complex medico-legal artifices. It reflects a culture that places high value on both scientific medicine and the sanctity of life as such, and illustrates a medical culture that pitches battle against death. At the same time, the Law constructs the will of the individual in a medico-legal language that is alien to the lay person. The paper suggests an alternative approach to advance care planning that is patient-centred and addresses the psycho-social needs of the individual in terms of her relational autonomy. From this perspective, advance care planning becomes an opportunity to extract the patient from the medical context and allow her to speak about her approaching death with close ones in her own terms of reference. To this end, there is a need for facilitation of an intimate encounter where patients can speak about their concerns with their loved ones. The paper also presents a methodological approach of attentive listening, which can be applied across diverse cultures and circumstances. (shrink)

“Ethics” is used as a label for a new kind of expertise in the field of science and technology. At the same time, it is not clear what ethical expertise consists in and what its political status in modern democracies can be. Starting from the “participatory turn” in recent social research and policy, we will argue that bioethical reasoning has to include public views of and attitudes towards biomedicine. We will sketch the outlines of a bioethical conception of “public understanding (...) of ethics,” addressing three different issues: the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, the normative relevance of such lay moralities for the justification of ethical decisions, and the necessity of public deliberation in this context. Finally, we draw conclusions in view of the concepts and methods such a conception of “public understanding of ethics” should employ. (shrink)

The fact that the emergence of “technoscience,” resulting from the coalescing of science and technology, may have serious social and cultural impact has been debated in recent years particularly with regard to the field of medicine. The present article is exploring the scope and limits of the “technoscientization” of medicine using the example of rare disease patient associations. It is investigated whether and to what extent these organizations adopt technoscientific illness identities and subscribe to the research priorities and objectives of (...) biomedicine. In addition, it is analyzed whether Paul Rabinow’s highly influential concept of biosociality entails a technoscientific model of identity or, quite to the contrary, offers a framework for contesting biomedical ascriptions of identities. As the article shows, patient associations do refer to technoscientific definitions of diseases yet constantly modify and transform them based on their everyday illness experiences. Likewise, the “biosociality” of rare disease patients emerges from the shared experience of having been neglected by mainstream medical research rather than from supposedly objective biomedical classifications. (shrink)

Dealing with major issues in Jewish biomedical law, this book focuses upon the influence of morality, the rise of patient autonomy, and the role played by scientific progress in this area of Jewish Law. The book examines Jewish Law in comparison with canon, common, and modern Israeli law.

This article discusses the notion of emergent concerned groups and explores how these groups contribute to shaping the relations between technoscience, politics, and economic markets. The first part presents the case of the French Association of patients suffering from muscular dystrophies. This history suggests that under certain conditions, emergent concerned groups are able to impose a new form of articulation between scientific research and political identities by directly linking the issues of research content and results to that of their place (...) in the collective. The second part argues that the evolution of economic markets, combined with that of science and technology, leads to a multiplication of those emergent concerned groups. The study of the conditions under which these emergent groups become legitimate stakeholders as well as the analysis of their impact on market organization and technoscientific institutions are key research topics for the near future. (shrink)

The moral discourse surrounding end-of-life (EoL) decisions is highly complex, and a comparison of Germany and Israel can highlight the impact of cultural factors. The comparison shows interesting differences in how patient’s autonomy and doctor’s duties are morally and legally related to each other with respect to the withholding and withdrawing of medical treatment in EoL situations. Taking the statements of two national expert ethics committees on EoL in Israel and Germany (and their legal outcome) as an example of this (...) discourse, we describe the similarity of their recommendations and then focus on the differences, including the balancing of ethical principles, what is identified as a problem, what social role professionals play, and the influence of history and religion. The comparison seems to show that Israel is more restrictive in relation to Germany, in contrast with previous bioethical studies in the context of the moral and legal discourse regarding the beginning of life, in which Germany was characterized as far more restrictive. We reflect on the ambivalence of the cultural reasons for this difference and its expression in various dissenting views on passive euthanasia and advance directives, and conclude with a comment on the difficulty in classifying either stance as more or less restrictive. (shrink)

The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning (...) genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse. (shrink)

The Roman Catholic theological approach to euthanasia is radically prohibitive. The main theological argument for this prohibition is the so-called “stewardship argument”: Christians cannot escape accounting to God for stewardship of the bodies given them on earth. This contribution presents an alternative approach based on European existentialist and philosophical traditions. The suggestion is that exploring the fullness of our relational responsibility is more apt for a pluralist – and even secular – debate on the legitimacy of euthanasia.

The author traces the ways in which various patients and collective associations of patients come to regard themselves as the users of future stem cell technologies. The author uses Althusser’s notion of interpellation, whereby an identity is the result of the situated encounter of a subject and an authority, to analyze the ways in which patient associations’ current involvement with basic research is related to the enactment of science as a series of technology development projects. The author argues that this (...) ‘‘project-ness’’ forms a certain privileged logic that interpellates patients and their associations in specific ways. Through the listings of illnesses circulated in the mass media, which are hoped to be treatable or curable with stem cell therapies, patients come to recognize themselves as the projected users of stem cell technologies. The author fleshes out the process of this userfication and the various responses made by patients and their associations when hailed by the entrepreneurial projects of stem cell research. (shrink)

This article presents the new German law on advance directives from 1 September 2009. The history of the parliamentary process of this law is described, the present regulations are explained, their relevance for medical practice discussed and shortcomings are identified. Finally, the new law is compared with other regulations in the international context. Previously established legal practice in Germany has now become largely confirmed by the new law: An advanced directive must be respected in any decision concerning medical treatment, regardless (...) of the stage of the illness. It can be informally revoked at any time, even with limited decision-making capacity. Nobody may be obliged to issue a directive in any way. Advance directives do not need notarisation or routine updating after certain time intervals. Provided that the patient, who is no longer mentally competent, has issued a lasting power of attorney, or provided that the patient has been appointed a healthcare proxy by the courts, this authorised surrogate must assert the patient's will. The role of the guardianship court is clarified: it only needs to be involved in cases of disagreement as to the patient's will. The new German law thus combines more legal certainty with a liberal emphasis on patient autonomy and flexible, adaptable regulations. (shrink)