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)

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)

The utilization of alternative medical therapies and practitioners has increased dramatically in the U.S. in the last two to three decades. This trend seems paradoxical when one considers the rapid advances taking place in biomedical knowledge and technology during this same time period. Observers both inside and outside of the medical profession have attempted to explain the rising popularity of alternative medicine by proposing that it signals a growing sense of dissatisfaction and disenchantment with professional biomedical practices on the part (...) of the lay public. This paper challenges this thesis and offers an alternative explanation, arguing that the rise of alternative medicine is a consequence of the success and expanding influence of biomedicine rather than its failure and declining authority. The argument presented draws primarily on Ulrich Beck’s “risk society” perspective and theory of “reflexive modernization,” with specific attention to his analysis of the “reflexive scientization” process. The application of this perspective allows us to understand the emergence and development of alternative medicine as an unanticipated consequence of the process of reflexive biomedicalization in the late modern era. (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)