In 1977 John Money published the first modern case histories of what he called ‘apotemnophilia’, literally meaning ‘amputation love’ [Money et al., The Journal of Sex Research, 13(2):115–12523, 1977], thus from its inception as a clinically authorized phenomenon, the desire for the amputation of a healthy limb or limbs was constituted as a sexual perversion conceptually related to other so-called paraphilias. This paper engages with sex-based accounts of amputation-related desires and practices, not in order to substantiate the paraphilic model, but (...) rather, because the conception of these (no doubt) heterogeneous desires and practices as symptoms of a paraphilic condition (or conditions) highlights some interesting cultural assumptions about ‘disability’ and ‘normalcy’, their seemingly inherent (un)desirability, and their relation to sexuality. In critically interrogating the socio-political conditions that structure particular desires and practices such that they are lived as improper, distressing and/or disabling, the paper constitutes an exercise in what Margrit Shildrick [Beyond the body of bioethics: Challenging the conventions. In M. Shildrick and R. Mykitiuk (Eds.), Ethics of the body: Postconventional challenges (pp. 1–26). New York: MIT Press, 2005] refers to as “postconventional ethics”. (shrink)

In an overview of the essays in this project, a number of clinical ethics issues receive emphasis. (1) One cluster concerns the ethical concerns presented within the relationship between the providers (doctor, nurse, etc.) and patient (and family), as distinct from those associated with being a clinical ethics consultant invited into a situation to assist. (2) Distinct from these are ethical issues intrinsic to the ways in which clinical encounters are variously written about (from chart notes to published articles). (3) (...) Finally, there is a set of issues connected with the major characteristics of clinical encounters, in view of which it is imperative to be specifically attentive to the fine details and complex interactions among patient, doctor, family, and others, within a specific social context. Keeping these matters in mind helps to clarify the differences between consulting (talking and listening) and writing about consultations, as well as among the various kinds of writing about clinical encounters. (shrink)

In the context of the question of the extent to which science studies is able to mount an adequate critique of contemporary developments in science and technology, and in view of the proliferating interest in ethics across the social sciences, this article has two aims. Firstly to address some of the implications for ethics of Bruno Latour's, and to a lesser extent Alfred North Whitehead’s, conceptions of reality, both of which have a bearing on the long-standing dichotomy between facts and (...) values. Drawing on Whitehead's work, it also, secondly, seeks to make a positive argument for ethics and to ask again, in the light of this discussion, where the ethical dimensions of Latour's work might be located. Towards the end of the article, I suggest that Latour's concept of exteriority obliges him to pursue a politics of reality which is the special providence of ‘moralists’, rather than a politics of virtual reality in which all entities, human and non-human, are engaged. (shrink)

Academics from diverse disciplines are recognizing not only the procedural ethical issues involved in research, but also the complexity of everyday “micro” ethical issues that arise. While ethical guidelines are being developed for research in aboriginal populations and low-and-middle-income countries, multi-partnered research initiatives examining arts-based interventions to promote social change pose a unique set of ethical dilemmas not yet fully explored. Our research team, comprising health, education, and social scientists, critical theorists, artists and community-activists launched a five-year research partnership on (...) arts-for-social change. Funded by the Social Science and Humanities Research Council in Canada and based in six universities, including over 40 community-based collaborators, and informed by five main field projects, we set out to synthesize existing knowledge and lessons we learned. We summarized these learnings into 12 key points for reflection, grouped into three categories: community-university partnership concerns, dilemmas related to the arts, and team issues. In addition to addressing previous concerns outlined in the literature, we identified power dynamics hindering meaningful participation of community partners and university-based teams that need to be addressed within a reflective critical framework of ethical practice. We present how our team has been addressing these issues, as examples of how such concerns could be approached in community-university partnerships in arts for social change. (shrink)

Adjustments of everyday life in order to prevent disease or treat illness afflict partly unconscious preferences and cultural expectations that are often difficult to change. How should one, in medical contexts, talk with patients about everyday life in ways that might penetrate this blurred complexity, and help people find goals and make decisions that are both compatible with a good life and possible to accomplish? In this article we pursue the question by discussing how Habermas’ theory of communicative action can (...) be implemented in decision-making processes in general practice. The theory of deliberative decision-making offers practical guidelines for what to talk about and how to do it. For a decision to be rooted in patients’ everyday life it has to take into consideration the patient’s practical circumstances, emotions and preferences, and what he or she perceives as ethically right behaviour towards other people. The aim is a balanced conversation, demonstrating respect, consistency and sincerity, as well as offering information and clarifying reasons. Verbalising reasons for one’s preferences may increase awareness of values and norms, which can then be reflected upon, producing decisions rooted in what the patient perceives as good and right behaviour. The asymmetry of medical encounters is both a resource and a challenge, demanding patient-centred medical leadership, characterised by empathy and ability to take the patient’s perspective. The implementation and adjustments of Habermas’ theory in general practice is illustrated by a case story. Finally, applications of the theory are discussed. (shrink)