With a few notable exceptions disability studies has not taken account of intersexuality, and it is principally through the lenses of feminist and queer-theory oriented ethical discussions but not through ‘straight’ bioethics that modes valuing intersex difference have been proposed. Meanwhile, the medical presupposition that intersex characteristics are inherently disabling to social viability remains the taken-for-granted truth from which clinical practice proceeds. In this paper I argue against bioethical perspectives that justify extensive and invasive pre- and post-natal medical interference to (...) eradicate intersex. I argue instead that to constitute the necessary conditions for the recognition of the intersexed child as a person, a life valid in its own right, clinicians must refrain from aggressive interference. Clinical specialists presuppose that intersexed children will be socially disabled and unrecognizable as persons; frustrated by the general failure of traditional interventions to assign a sex, clinicians are now pursuing prenatal technologies, including selective termination, to erase intersex. (shrink)

The call for a narrative medicine has been touted as the cure-all for an increasingly mechanical medicine. It has been claimed that the humanities might create more empathic, reflective, professional and trustworthy doctors. In other words, we can once again humanise medicine through the addition of humanities. In this essay, I explore how the humanities, particularly narrative medicine, appeals to the metaphysical commitments of the medical institution in order to find its justification, and in so doing, perpetuates a dualism of (...) humanity that would have humanism as the counterpoint to the biopsychosociologisms of our day. (shrink)

Many commentators today lament the politicization of bioethics, but some suggest distinguishing among different kinds of politicization. This essay pursues that idea with reference to three traditions of political thought: liberalism, communitarianism, and republicanism. After briefly discussing the concept of politicization itself, the essay examines how each of these political traditions manifests itself in recent bioethics scholarship, focusing on the implications of each tradition for the design of government bioethics councils. The liberal emphasis on the irreducible plurality of values and (...) interests in modern societies, and the communitarian concern with the social dimensions of biotechnology, offer important insights for bioethics councils. The essay finds the most promise in the republican tradition, however, which emphasizes institutional mechanisms that allow bioethics councils to enrich but not dominate public deliberation, while ensuring that government decisions on bioethical issues are publicly accountable and contestable. (shrink)

Central to this essay is the understanding that varied communities may have an inherent and unrecognised culture of their own and this culture may be detrimental to their core. Bioethics constitutes one such community and is embedded in norms and values comprising its own culture. I use exclusion of religion or simply ‘irreligion’ as an example of a cultural element that may be established and so shape the culture of bioethics. Irreligious bioethics includes both overt religious preclusion and the more (...) pervasive form of religious marginalisation. This norm is narrated into the culture of bioethics with justifications sustaining it. Irreligious bioethics is inadmissible as it claims illegitimate neutrality, is a misuse of expertise and results in a variety of harms. As bioethics is influential in society, those engaged should be critically reflective and aware of harmful cultural elements whilst also possessing the honesty, courage and capacity to change them. (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 global development of human embryonic stem cell science and its therapeutic applications are dependent on the nature of its engagement at national and international levels with key cultural values and beliefs concerning the moral status of the early human embryo. This article argues that the political need to reconcile the promise of new health technologies with the cultural costs of scientific advance, dependent in this case on the use of the human embryo, has been met by the evolution of (...) bioethics as a political community, transnational network, and bureaucratic device. Bioethics has become the political means for the creation of a global moral economy where the trading and exchange of values is normalized and legitimated. As a result of such trading, value compromises are produced capable of legitimizing the regulatory policies necessary for maintaining public trust in the new science. (shrink)

Deliberative democracy harbors a recurrent tension between full inclusion and intelligible speech. People with profound cognitive disabilities often signify this tension. While liberal deliberative theorists sacrifice inclusion for intelligibility, this exclusion is unnecessary. Instead, by analyzing deliberative locations that already include people with disabilities, I offer two ways to revise deliberative norms. First, the physical presence of disabled bodies expands the value of publicity in deliberative democracy, demonstrating that the publicity of bodies provokes new conversations similar to rational speech acts. (...) Second, the inclusion of people with profound disabilities necessitates a form of collaborative speech in which individuals make claims collaboratively. Habermas offers an ideal site to pursue this analysis because he recognizes the theoretical tension between inclusion and intelligibility and because his personal testimony reveals important insight into the lived experience of disability. (shrink)

El Convenio de Oviedo, de 1997, demuestra la dificultad de llegar a acuerdos internacionales sobre cómo regular la investigación biomédica, en especial los límites de la investigación con embriones. Algunos temas de Bioética muestran la pluralidad de doctrinas y de sistemas morales; es más, pueden indicar el final de la era del consenso. El final de la pax bioetica, que tanto significó para el éxito de la disciplina a lo largo de tres décadas. Tender puentes, forjar consenso ha sido, en (...) efecto, una de las contribuciones más valiosas del discurso bioético y de los nuevos expertos en Bioética. Desde los años setenta, los principios del Liberalismo y las actitudes pragmáticas han sido el núcleo de su ideología, un tipo de consenso «americano» para poner fronteras a las ideologías políticas o radicales. Sin embargo, la actual agenda ampliada de la Bioética, así su expansión internacional, están minando el consenso básico. Un giro más político de la Bioética podría, tal vez, ofrecer algunos acuerdos sobre temas específicos. Este tipo de consenso estaría también más cerca de los intereses de los ciudadanos, así como del nuevo contexto, global y social: sería un consenso «republicano», por así decirlo. El artículo analiza la evolución desde la etapa del consenso –tender puentes, principios comunes, procedimientos «no densos»– hacia los acuerdos plurales –contextuales, «densos»–, teniendo en cuenta la pluralidad de los valores morales y de las fronteras culturales. (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: (a) the methodological relevance of moral questions and problems raised by lay persons in everyday life regarding biomedicine and technology, (b) the normative relevance of such lay moralities for the justification of ethical decisions, and (c) 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)

Many commentators today lament the politicization of bioethics, but some suggest distinguishing among different kinds of politicization. This essay pursues that idea with reference to three traditions of political thought: liberalism, communitarianism, and republicanism. After briefly discussing the concept of politicization itself, the essay examines how each of these political traditions manifests itself in recent bioethics scholarship, focusing on the implications of each tradition for the design of government bioethics councils. The liberal emphasis on the irreducible plurality of values and (...) interests in modern societies, and the communitarian concern with the social dimensions of biotechnology, offer important insights for bioethics councils. The essay finds the most promise in the republican tradition, however, which emphasizes institutional mechanisms that allow bioethics councils to enrich but not dominate public deliberation, while ensuring that government decisions on bioethical issues are publicly accountable and contestable. (shrink)

Complementary and alternative medicines (CAM) have become increasingly popular over recent decades. Within bioethics CAM has so far mostly stimulated discussions around their level of scientific evidence, or along the standard concerns of bioethics. To gain an understanding as to why CAM is so successful and what the CAM success means for health care ethics, this paper explores empirical research studies on users of CAM and the reasons for their choice. It emerges that there is a close connection to fundamental (...) principles of medical ethics. The studies also highlight that CAM’s holistic ontology of health and illness has an empowering effect on people in caring for their health, and on an even deeper level, safeguards against biomedicine’s reducing image of oneself as biological body-machine. The question is raised what lessons bioethics should draw from this emancipatory social movement for its own relationship with biomedicine. (shrink)

Straipsnyje analizuojamos bioetikoje vyraujančio pagarbos asmens autonomijai principo prielaidos. Remiantis antropologų L. Dumont’o ir C. Geertzo darbais parodoma, kaip pagarbos asmens autonomijai principas yra susijęs su vakarietiška, krikščioniška, individualistine asmens samprata bei iš to plaukiančiu racionalumo reikšmės įtvirtinimu informuoto sutikimo koncepte. Taip pat ginama idėja, kad būtina atsižvelgti į rūpesčio etikos, pabrėžiančios emocijų svarbą moralėje ir paremtos reliacinio asmens prielaida, pasiūlytas įžvalgas. Straipsnyje parodoma, kaip rūpesčio etikoje pasiūlyti normatyviniai rūpesčio idealai gali būti pritaikomi bioetiniame kontekste – konceptualizuojant rūpestį medicinos sferoje (...) galima pritaikyti Bourdieu pasiūlytą habitus konceptą ir išryškinti ne tik tarpasmeninių santykių svarbą moraliniam vystymuisi, bet ir įvairias sociokultūrines bei istorines įtakas, lemiančias tam tikrus mūsų elgsenos modelius. (shrink)