RESUMO
Although precision medicine cuts across a large spectrum of professions, interdisciplinary and cross-sectorial moral deliberation has yet to be widely enacted, let alone formalized in this field. In a recent research project on precision medicine, we designed a dialogical forum (i.e. 'the Ethics Laboratory') giving interdisciplinary and cross-sectorial stakeholders an opportunity to discuss their moral conundrums in concert. We organized and carried out four Ethics Laboratories. In this article, we use Simone de Beauvoir's concept of moral ambiguity as a lens to frame the participants' experience with fluid moral boundaries. By framing our approach through this concept we are able to elucidate irremediable moral issues that are collectively underexplored in the practice of precision medicine. Moral ambiguity accentuates an open and free space where different types of perspectives converge and can inform each other. Based on our study, we identified two dilemmas, or thematic interfaces, in the interdisciplinary moral deliberations which unfolded in the Ethics Laboratories: (1) the dilemma between the individual and the collective good; and (2) the dilemma between care and choice. Through our investigation of these dilemmas, we show how Beauvoir's concept of moral ambiquity not only serves as a fertile catalyst for greater moral awareness but, furthermore, how the concept can become an indispensable part of the practices of and the discourse about precision medicine.
Assuntos
Princípios Morais , Medicina de Precisão , HumanosRESUMO
Recent advancements in therapeutic and diagnostic medicine, along with the creation of large biobanks and methods for monitoring health technologies, have improved the prospects for preventing, treating, and curing illness. These same advancements, however, give rise to a plethora of ethical questions concerning good decision-making and best action. These ethical questions engage policymakers, practitioners, scientists, and researchers from a variety of fields in different ways. Collaborations between professionals in the medical and health sciences and the social sciences and humanities often take an asymmetrical form, as when social scientists use ethnographic approaches to study the moral issues and practices of physicians. The ethics laboratory described in this article is a cross-sectoral and inter-disciplinary forum for collaborative investigation on important moral topics. It offers an experimental way of unpacking implied assumptions, underlying values, and comparable notions from different professional healthcare fields. The aim of this article is to present the ethics laboratory's methodology. The article offers a model and a hermeneutical framework that rests on a dialogical approach to ethical questions. The model and the framework derive from a Danish research project, Personalized Medicine in the Welfare State. This article uses personalized medicine as a point of reference, though it offers an argument for the applicability of the model more broadly.