Philosophy and Moral Sciences

Comment engager le public dans une réflexion sur les enjeux éthiques de notre époque? Guidés par cette question, nous avons développé une plateforme d'échange avec la communauté sur des questions bioéthiques à travers une exposition artistique ainsi qu'une série d'activités de médiation culturelle et scientifique pour les adultes et les enfants. Ce dossier thématique dresse le compte-rendu de ce projet. Art + Bioéthique repose sur une stratégie interdisciplinaire et collaborative qui a amené six jeunes chercheurs en bioéthique à être jumelés à six artistes de la relève afin d'échanger et d'apporter un nouvel éclairage sur une variété d'enjeux éthiques liés à la santé. Ces duos artistes-chercheurs ont chacun développé une oeuvre et un essai sur un thème commun. Notre objectif était de décloisonner l'art et la recherche académique en bioéthique afin de créer des formes hybrides et inédites de diffusion, d'éducation, d'expérimentation et de rencontre. L'expression de la bioéthique à travers l'art constitue une façon innovatrice de transmettre l'aspect sensible de tant de questions éthiques touchant à la santé et au bien-être. À travers ses divers volets, Art+Bioéthique a su rejoindre plusieurs centaines de personnes et les engager dans une réflexion éthique sur des enjeux au coeur de notre société.

How should one engage the public in a reflection on the ethical issues of our time? Guided by this question, we developed a platform for exchange with the community on bioethical issues via an art exhibition and a series of cultural and scientific mediation activities for adults and children. This thematic dossier presents the report of the project. Art + Bioethics is based on an interdisciplinary and collaborative strategy that paired six young bioethics researchers with six emerging artists to share and shed new light on a variety of ethical issues related to health. These artist-researcher duos each developed a work and an essay on a common theme. Our goal was to break down barriers between art and academic research in bioethics and to create hybrids and new forms of dissemination, education, experimentation and meeting. The expression of bioethics through art represents an innovative way to transmit the sensitive aspect of so many ethical issues of health and well-being. Through its various components, Art + Bioethics was able to join several hundred people and engage in ethical reflection on issues that are at the heart of our society.

Le présent rapport a pour but d'apporter une aide constructive pour la mise à jour de la politique universitaire concernant les conflits d'intérêts (CI). Le rapport est une évaluation détaillée des politiques actuelles de l'Université afin d'aider une meilleure gestion de celles-ci. L'Université de Montréal a déjà une longueur d'avance sur plusieurs universités canadiennes en possédant une politique centrale sur la question. Toutefois, cette politique mériterait une mise à jour au regard des standards contemporains ainsi qu'une mise en ...

The combination of the issue of return of individual genetic results/incidental findings and paediatric biobanks is not much discussed in ethical literature. The traditional arguments pro and con return of such findings focus on principles such as respect for persons, autonomy and solidarity. Two dimensions have been distilled from the discussion on return of individual results in a genetic research context: the respect for a participant's autonomy and the duty of the researcher. Concepts such as autonomy and solidarity do not fit easily in the discussion when paediatric biobanks are concerned. Although parents may be allowed to enrol children in minimal risk genetic research on stored tissue samples, they should not be given the option to opt out of receiving important health information. Also, children have a right to an open future: parents do not have the right to access any genetic data that a biobank holds on their children. In this respect, the guidelines on genetic testing of minors are applicable. With regard to the duty of the researcher the question of whether researchers have a more stringent duty to return important health information when their research subjects are children is more difficult to answer. A researcher's primary duty is to perform useful research, a policy to return individual results must not hamper this task. The fact that vulnerable children are concerned, is an additional factor that should be considered when a policy of returning results is laid down for a specific collection or research project.

The use of stored tissue samples from children for genetic research raises specific ethical questions that are not all analogous to those raised when adult participants are concerned. These include issues with regard to consent, as it is typically a parent who consents to the use of samples from children. In this paper, we discuss the scope of parental consent. This scope has a temporal dimension and one related to the content of consent. It is not questioned that the temporal scope of parental consent is limited and that young adults have the right to decide on the fate of their samples when they reach the age of maturity. With regard to the content of consent, the question remains whether parents are allowed to give full broad consent to any possible future research on the samples of their children. We argue that they should not be allowed to do so, based on two premises. First, it is generally acknowledged that children have a right to express their own values and that they should be given the opportunity to develop their own autonomy as they grow older. Second, research and science are not completely value-free and some types of research may be more sensitive than other types. Children should be given the opportunity to express their values also in this respect.