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The Global ETD Search service is a free service for researchers
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Showing 251 to 255 of 255 (0.049 seconds)Spelling suggestions: "subject:"[een] INFORMED CONSENT"" "subject:"[enn] INFORMED CONSENT""
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Médecine personnalisée et bioéthique : enjeux éthiques dans l'échange et le partage des données génétiques / Personalized medicine and bioethics : ethical issues in the exchange and sharing of genetic dataStoeklé, Henri-Corto 09 June 2017 (has links)
Du point de vue de la médecine et des sciences du vivant, la médecine personnalisée (MP) est trop souvent réduite à cette idée d'adapter un diagnostic, une prédisposition ou un traitement, en fonction des caractéristiques génétiques d'un individu. Cependant, du point de vue des sciences humaines et sociales, la MP peut être considérée comme un phénomène social complexe en raison d'une existence propre et d'une composition sui generis, de l'effet de contraintes qu'il exerce sur les individus, d'un grand nombre d'interactions et d'interférences entre un grand nombre d'unités, mues d'incertitudes, d'indéterminations, de hasard, d'ordre et de désordre. Selon nous, cet autre point de vue permet de mieux étudier la MP par un travail de recherche en bioéthique, mais avec un nouvel objectif, opposé mais complémentaire de celui du droit et de la philosophie morale, et une nouvelle méthode. En effet, l'objectif de la bioéthique devrait être un travail de recherche prospectif questionnant les normes établies faisant face à un phénomène social complexe émergeant, non l'inverse. Ceci permet de déterminer les bénéfices pour la société, et ses individus, à laisser le phénomène émerger en son sein, et d'étudier des solutions possibles et probables et non des certitudes, pour le présent et le futur. De cette façon, les bénéfices identifiés pourront se produire. Mais cet objectif nécessite une méthode permettant d'étudier le fonctionnement du phénomène dans son ensemble, à l'échelle de la société, sans le réduire à l'a priori de certains individus, en privilégiant ses interactions à ses éléments : il s'agit de la modélisation théorique systémique inductive qualitative. L'idée clé est d'être dans une logique de découverte, non de preuve. Cette nouvelle approche nous a tout d'abord permis de comprendre que la MP ne devrait plus être nommée «personnalisée », ni même « génomique » ou de « précision», mais «médecine des données» (MD) étant donné le caractère centrale de la « donnée » (data) pour son fonctionnement. En effet, les finalités du phénomène semblent être, à partir d'une masse importante de données (génétiques), déduire (Datamining) ou induire (Big Data) différentes informations valorisables au niveau du soin, de la recherche et de l'industrie. Le moyen pour ça semble être le développement d'un réseau d'échange ou de partage d'échantillons biologiques, de données génétiques et d'informations entre patients, cliniciens, chercheurs et industriels, grâce à des voies de communication dématérialisées, qui centralisent le stockage des échantillons biologiques et des données génétiques, et une partie du traitement et de l'analyse, au niveau de centres de soin et de recherche académiques (France), et/ou d'entreprises privées (États-Unis), avec ou sans l'intermédiaire du clinicien. Les enjeux éthiques majeurs semblent donc résider dans les moyens et les modalités d'accès, de stockage et d'usage des données génétiques, car delà découle pour une organisation globalement similaire du phénomène un fonctionnement radicalement (social/libéral) opposé qui questionne certaines normes morales et juridiques. Au final, notre méthode nous a permis d'apporter différents arguments en faveur du consentement éclairé exprès électronique (e-CE) dynamique comme solution et moyen permettant un développement de la MD plus optimal concernant l'accès, le stockage et l'usage des données génétiques que ce soit pour le partage (France) ou l'échange (États-Unis) des données génétiques. / In the context of medicine and life sciences, personalized medicine (PM) is all too often reduced to the idea of adapting a diagnosis, predisposition or treatment according to the genetic characteristics of an individual. However, in human and social sciences, PM may be considered as a complex social phenomenon, due to the proper existence and unique composition of the constraints it imposes on individuals, the large number of interactions and interferences between a large number of units, rich in uncertainties, indeterminations, chance, order and disorder. We feel that this alternative point of view makes it possible to study PM more effectively by bioethics research approaches, but with a new objective, contrasting but complementary to those of law and moral philosophy, and a new method. Indeed, the objective of bioethics should be prospective studies questioning established norms in the face of emerging complex social phenomena, rather than the other way round. This makes it possible to determine the benefits, to society and its individuals, of allowing the phenomenon to emerge fully, and to study possible and probable solutions, rather than certainties, for the present and the future. This may allow the identified benefits to occur. However, this objective requires a method for studying the functioning of the phenomenon as a whole, at the scale of society, without a priori restriction to certain individuals, thereby favoring its interactions over its elements. Qualitative inductive systemic theoretical modeling is just such an approach. The key idea here is a rationale of discovery, rather than of proof. This new approach allowed us to understand that PM should not be called "personalized", or even "genomic" or "precision" medicine, and that the term "data medicine" (DM) should be favored, given the key role of data in its functioning. Indeed, the goal of this phenomenon seems to be to use a large mass of data (genetics) to deduce (data mining) or induce (big data) different types of information useful for medical care, research and industry. The means of achieving this end seems to be the development of a network for exchanging or sharing biological samples, genetic data and information between patients, clinicians, researchers and industrial partners, through electronic communication, with the central storage of biological samples and genetic data, and with treatment and analysis carried out at academic care and research centers (France) or in private companies (United States), with or without the involvement of a clinician. The major ethical issues thus seem to relate to the means and mode of access to, and the storage and use of genetic data, which may lead to a radically opposed (social/liberal) organizations and functioning, calling into question certain moral and legal standards. Finally, our method provided several arguments in favor of the use of dynamic electronic informed consent (e-CE) as a solution optimizing the development of PM in terms of genetic data access, storage and use, for the sharing (France) or exchange (United States) of genetic data.
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La participation des peuples autochtones à l’évaluation d’impact au Canada : au-delà du consentement, une conception de l’autorité décisionnelleChabot-Martin, Camille 08 1900 (has links)
Ce mémoire vise à mieux comprendre les débats politiques concernant la participation des peuples autochtones à la prise de décision en matière de développement du territoire et des ressources dans le contexte de l’évaluation d’impact au Canada. Si l’évaluation d’impact est perçue comme un mécanisme au sein duquel se matérialisent les droits autochtones (dont l’obligation de consulter de la Couronne), les principaux acteurs de ces processus (gouvernement fédéral, promoteurs des projets et groupes autochtones) ne semblent pas s’entendre sur la signification et la portée des normes en matière de participation autochtone, en particulier sur le consentement préalable, libre et éclairé (CPLE). Par une analyse du discours de ces intervenants dans le cadre des travaux parlementaires menant à l’adoption de la Loi sur l’évaluation d’impact (2019), cette recherche révèle trois conceptions principales de la place des Autochtones dans les processus de prise de décision de l’évaluation d’impact : procédurale, partenariale et fondée sur l’autodétermination.
Ce mémoire met aussi en évidence d’importantes différences en ce qui concerne les attentes face au modèle de participation et plus spécifiquement sur l’interprétation du CPLE. Ces différences reposent en grande partie sur la façon dont ceux-ci conçoivent l’autorité décisionnelle en matière de gouvernance territoriale au Canada. Pour les intervenants gouvernementaux et autochtones, les conceptions en matière de participation et d’autorité décisionnelle s’appuient sur des fondements juridiques. En revanche, pour l’industrie, la justification de la participation des Autochtones est davantage de nature économique et liée à son impact sur l’approbation des projets. / This thesis aims to better understand the political debates regarding Indigenous peoples’ participation in land and resource decision-making in the context of impact assessment in Canada. While impact assessment is viewed as a mechanism through which Indigenous rights (including the Crown's duty to consult) are realized, the actors in these processes (federal government authorities, project promoters and indigenous groups) do not seem to agree on the meaning and scope of Indigenous participation norms, notably regarding free, prior and informed consent (FPIC). Through discourse analysis of these actors within the framework of the parliamentary work leading to the adoption of the Impact Assessment Act (2019), this research reveals three main conceptions of the place of Indigenous peoples in impact assessment decision-making processes: procedural, partnership and based on self-determination.
This thesis also highlights important differences in terms of expectations regarding the type of participation and more specifically on FPIC interpretations. These differences are largely based on how they conceive decision-making authority in matters of territorial governance in Canada. For the government and the Indigenous actors, notions of participation and decision-making authority are based on legal foundations. In contrast, for the industry, the rationale behind Indigenous participation is rather economic and linked to its impact on project approval.
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“Accumulation by Dispossession” by the Global Extractive Industry: The Case of CanadaKinuthia, Wanyee 13 November 2013 (has links)
This thesis draws on David Harvey’s concept of “accumulation by dispossession” and an international political economy (IPE) approach centred on the institutional arrangements and power structures that privilege certain actors and values, in order to critique current capitalist practices of primitive accumulation by the global corporate extractive industry. The thesis examines how accumulation by dispossession by the global extractive industry is facilitated by the “free entry” or “free mining” principle. It does so by focusing on Canada as a leader in the global extractive industry and the spread of this country’s mining laws to other countries – in other words, the transnationalisation of norms in the global extractive industry – so as to maintain a consistent and familiar operating environment for Canadian extractive companies. The transnationalisation of norms is further promoted by key international institutions such as the World Bank, which is also the world’s largest development lender and also plays a key role in shaping the regulations that govern natural resource extraction. The thesis briefly investigates some Canadian examples of resource extraction projects, in order to demonstrate the weaknesses of Canadian mining laws, particularly the lack of protection of landowners’ rights under the free entry system and the subsequent need for “free, prior and informed consent” (FPIC). The thesis also considers some of the challenges to the adoption and implementation of the right to FPIC. These challenges include embedded institutional structures like the free entry mining system, international political economy (IPE) as shaped by international institutions and powerful corporations, as well as concerns regarding ‘local’ power structures or the legitimacy of representatives of communities affected by extractive projects. The thesis concludes that in order for Canada to be truly recognized as a leader in the global extractive industry, it must establish legal norms domestically to ensure that Canadian mining companies and residents can be held accountable when there is evidence of environmental and/or human rights violations associated with the activities of Canadian mining companies abroad. The thesis also concludes that Canada needs to address underlying structural issues such as the free entry mining system and implement FPIC, in order to curb “accumulation by dispossession” by the extractive industry, both domestically and abroad.
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“Accumulation by Dispossession” by the Global Extractive Industry: The Case of CanadaKinuthia, Wanyee January 2013 (has links)
This thesis draws on David Harvey’s concept of “accumulation by dispossession” and an international political economy (IPE) approach centred on the institutional arrangements and power structures that privilege certain actors and values, in order to critique current capitalist practices of primitive accumulation by the global corporate extractive industry. The thesis examines how accumulation by dispossession by the global extractive industry is facilitated by the “free entry” or “free mining” principle. It does so by focusing on Canada as a leader in the global extractive industry and the spread of this country’s mining laws to other countries – in other words, the transnationalisation of norms in the global extractive industry – so as to maintain a consistent and familiar operating environment for Canadian extractive companies. The transnationalisation of norms is further promoted by key international institutions such as the World Bank, which is also the world’s largest development lender and also plays a key role in shaping the regulations that govern natural resource extraction. The thesis briefly investigates some Canadian examples of resource extraction projects, in order to demonstrate the weaknesses of Canadian mining laws, particularly the lack of protection of landowners’ rights under the free entry system and the subsequent need for “free, prior and informed consent” (FPIC). The thesis also considers some of the challenges to the adoption and implementation of the right to FPIC. These challenges include embedded institutional structures like the free entry mining system, international political economy (IPE) as shaped by international institutions and powerful corporations, as well as concerns regarding ‘local’ power structures or the legitimacy of representatives of communities affected by extractive projects. The thesis concludes that in order for Canada to be truly recognized as a leader in the global extractive industry, it must establish legal norms domestically to ensure that Canadian mining companies and residents can be held accountable when there is evidence of environmental and/or human rights violations associated with the activities of Canadian mining companies abroad. The thesis also concludes that Canada needs to address underlying structural issues such as the free entry mining system and implement FPIC, in order to curb “accumulation by dispossession” by the extractive industry, both domestically and abroad.
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A case for memory enhancement : ethical, social, legal, and policy implications for enhancing the memoryMuriithi, Paul Mutuanyingi January 2014 (has links)
The desire to enhance and make ourselves better is not a new one and it has continued to intrigue throughout the ages. Individuals have continued to seek ways to improve and enhance their well-being for example through nutrition, physical exercise, education and so on. Crucial to this improvement of their well-being is improving their ability to remember. Hence, people interested in improving their well-being, are often interested in memory as well. The rationale being that memory is crucial to our well-being. The desire to improve one’s memory then is almost certainly as old as the desire to improve one’s well-being. Traditionally, people have used different means in an attempt to enhance their memories: for example in learning through storytelling, studying, and apprenticeship. In remembering through practices like mnemonics, repetition, singing, and drumming. In retaining, storing and consolidating memories through nutrition and stimulants like coffee to help keep awake; and by external aids like notepads and computers. In forgetting through rituals and rites. Recent scientific advances in biotechnology, nanotechnology, molecular biology, neuroscience, and information technologies, present a wide variety of technologies to enhance many different aspects of human functioning. Thus, some commentators have identified human enhancement as central and one of the most fascinating subject in bioethics in the last two decades. Within, this period, most of the commentators have addressed the Ethical, Social, Legal and Policy (ESLP) issues in human enhancements as a whole as opposed to specific enhancements. However, this is problematic and recently various commentators have found this to be deficient and called for a contextualized case-by-case analysis to human enhancements for example genetic enhancement, moral enhancement, and in my case memory enhancement (ME). The rationale being that the reasons for accepting/rejecting a particular enhancement vary depending on the enhancement itself. Given this enormous variation, moral and legal generalizations about all enhancement processes and technologies are unwise and they should instead be evaluated individually. Taking this as a point of departure, this research will focus specifically on making a case for ME and in doing so assessing the ESLP implications arising from ME. My analysis will draw on the already existing literature for and against enhancement, especially in part two of this thesis; but it will be novel in providing a much more in-depth analysis of ME. From this perspective, I will contribute to the ME debate through two reviews that address the question how we enhance the memory, and through four original papers discussed in part three of this thesis, where I examine and evaluate critically specific ESLP issues that arise with the use of ME. In the conclusion, I will amalgamate all my contribution to the ME debate and suggest the future direction for the ME debate.
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