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La légitimité d'une éventuelle application de la thérapie germinale humaine : les aspects juridiques et éthiquesSénécal, Karine 08 1900 (has links)
La thérapie germinale est une avenue médicale qui est loin de pouvoir être appliquée de
manière sécuritaire et responsable car les connaissances médicales actuelles sont
insuffisantes. De surcroît, l'encadrement normatif qui l'entoure est unanime et clame la
non-acceptabilité de son application humaine. Certains instruments adoptent une approche
rigide en la prohibant formellement, d'autres adoptent une approche flexible en demeurant
ouverts à une éventuelle application. Il y a donc divergence quant à la légitimité de cette
technique.
La médecine moderne doit reposer sur des principes directeurs issus de diverses sources,
empruntées au droit et à l'éthique. Les principes retenus pour examiner la légitimité de la
thérapie germinale sont tirés, d'une part, des droits et libertés fondamentales: ce sont les
principes fondamentaux de dignité, de liberté, d'égalité. D'autre part, ils sont issus des
règles d'éthique de la recherche: plus particulièrement le principe de bienfaisance (nonmalfaisance)
et celui du respect de la personne.
La perspective d'une éventuelle application humaine de la thérapie germinale ne porte pas
nécessairement atteinte aux principes fondamentaux, dépendamment du genre d'application
qui est envisagé. Une application restreinte, appliquée dans des circonstances particulières
et en vue de soulager ou d'éliminer certaines formes de détresses et de souffrances, pourrait
être conforme aux principes qui soutiennent les droits et libertés fondamentales. La thérapie
germinale soulève des questions éthiques difficiles et parfois inédites, notamment
l'extension des risques aux générations futures et l'obligation d'un suivi à long terme pour
des descendants qui n'auront pas eux-mêmes donné leur consentement à cette «thérapie».
La thérapie germinale est présentement non acceptable mais ne devrait pas faire l'objet
d'une prohibition totale. / Germ-line therapy is far from being applied in a secure and responsible way because of
insufficient medical knowledge. The unanimity against its human application is manifest in
the normative frameworks which universally reject it as unacceptable. Certain instruments
adopt a rigid approach and formally prohibit it, while others adopt a flexible approach by
remaining open to possible applications. There is significant divergence on the legitimacy
of this technique.
Modem medicine must rest on guiding principles stemming from various sources borrowed
from law and from ethics. Framing principles are derived, on one hand, from fundamental
rights and freedoms such as the principles of dignity, liberty, and equality, and on the other
hand, from the rules of research ethics based on principles such as beneficence and the
respect for persons.
The prospect of human applications of germ-line therapy does not inevitably infringe on
fundamental principles. It depends the application envisaged. A restricted application, used
in specific circumstances to relieve or eliminate certain forms of suffering, could respect
the principles endorse fundamental rights and freedoms. Germ-line therapy raises difficult
and sometimes new ethical questions: notable examples include the extension of the risks
to persons other than the treated subject and the obligation of long-term follow-up for the
descendants who did not consent to the research.
Germ-line therapy is presently unacceptable given the current state ofknowledge; however,
it should not be the object of a total prohibition.
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The development of working relationships between indigenous and expatriate teachers : a case studyBrown, Byron Alditon 01 January 2002 (has links)
The education reform efforts in Botswana have focused predominantly on teacher
preparation, recruitment and compensation. Recruitment efforts have resulted in a
significant number of expatriates working with indigenous teachers in many schools.
However, as the schools are currently upgraded and restructured, the quality of the
working relationships forged between indigenous and expatriate teachers represents one
vital aspect in the reform effort that has gone almost unattended. Many teachers have
become dissatisfied and concerned about these relationships, despite compensation and
preparation. A decisive first step in attending to these relationships lies in understanding
how they develop. The aim of this exploratory study was to identify and describe factors
related to the development of working relationships between indigenous and expatriate
teachers and illustrate how those factors contribute to the development of these
relationships. The study employed a micropolitical perspective and through
phenomenological interviews, observation and document analysis, indicated that cultural
differences in language and communication, regard for time, handling of student
discipline, work ethics and professionalism along with ambiguity and uncertainty,
professional and interpersonal obligations, indigenous to expatriate teacher ratio and the
interplay of micropolitics are related to the development of these relationships. Results,
however, are specific to one school context and should not be generalized. The study
recommends management strategies such as provision of programmes for cultural
exchange, communication mode standardization, a dean of discipline system, faculty
building and further research to redress the situation. / Further Teacher Education / M.Ed.
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Phénomène de biohype dans des articles scientifiques rapportant des résultats issus de recherches cliniques en nutrigénétique/nutrigénomique : caractérisation et perception des chercheursStenne, Raphaëlle 06 1900 (has links)
Le développement de la nutrigénétique/nutrigénomique (NGx) a suscité de nombreuses attentes puisque les retombées qui lui sont associées s’avèrent potentiellement bénéfiques autant pour les individus en santé que pour les individus malades. De grandes attentes avaient également été associées au Projet de décryptage du Génome Humain (PGH). Aujourd’hui, seules quelques attentes de celles envisagées se sont concrétisées. Le PGH a donc évolué dans un contexte marqué par du biohype, soit la promotion d’attentes exagérées, voir irréalistes. Étant donné l’importance des attentes associées avec le développement de la NGx et des limites méthodologiques auxquelles fait encore face la recherche clinique conduite dans ce domaine, l’objectif principal de cette thèse est de déterminer si les publications scientifiques rapportant des résultats de recherches cliniques effectuées en NGx contribuent à l’émergence d’un phénomène de biohype. Plus spécifiquement, il s’agira également de documenter la perception des chercheurs oeuvrant dans le domaine de la NGx du phénomène de biohype, d’identifier certains facteurs qui pourraient expliquer son émergence dans la littérature scientifique propre à ce domaine et de proposer des pistes d’actions pour limiter les risques associés à ce phénomène.
Nous avons tout d’abord procédé à une analyse documentaire d’articles scientifiques rapportant des résultats issus de recherches cliniques en NGx. Celle-ci nous a révélé que plusieurs bénéfices étaient promus dans cette littérature alors même que les limites méthodologiques n’étaient pas d’emblée présentées et discutées. Cette observation nous portait à croire que ces bénéfices étant potentiellement prématurés.
Nous avons ensuite voulu valider notre constat auprès des chercheurs œuvrant principalement dans le domaine de la NGx. Cette enquête nous a permis de constater que les chercheurs étaient généralement en accord avec les bénéfices que nous avons recensés dans les articles scientifiques. Toutefois, ils n’envisageaient pas leur concrétisation à moyen terme. Par ailleurs, cette enquête nous a également révélé que les limitations méthodologiques actuellement rencontrées dans la conduite de recherches cliniques soulevaient des doutes quant à la faisabilité des bénéfices promut dans les articles scientifiques. Ces données viennent confirmer notre observation à savoir qu’un phénomène de biohype serait réellement en émergence dans les articles scientifiques rapportant des résultats de recherches cliniques en NGx.
Outre des informations concernant les publics ciblés par les chercheurs et les éléments que doivent contenir un article scientifique, cette enquête nous a également aidés à mieux comprendre les avantages associés à la promotion de bénéfices. Selon la majorité des chercheurs interrogés, la promotion de bénéfices dans un article scientifique augmenterait les chances d’un manuscrit d’être publié et favoriserait la continuité du financement du domaine de recherche. Cette activité étant caractérisée par un environnement compétitif, la promotion de bénéfices semble être une avenue à envisager pour se démarquer.
Quoique la promotion de bénéfices prématurés ou exagérés ne soit pas considérée comme de l’inconduite scientifique, elle peut causer entre autres un affaiblissement du sentiment de confiance entre le public et les chercheurs et ultimement, contrevenir à la continuité d’une saine activité de recherche.
À la lumière de ces données, nous croyons qu’une des stratégies qui permettrait de prévenir l’apparition des risques associés au phénomène de biohype serait de sensibiliser les chercheurs et les éditeurs de journaux scientifiques à ces derniers. Plus particulièrement, nous encourageons l’intégration de lignes directrices portant sur la gestion du biohype dans les codes de conduites qui ont été mis en place pour favoriser les bonnes pratiques en recherche. / The development of the nutrigenetics/nutrigenomics (NGx) has generated many expectations since the associated benefits are potentially beneficial for everyone, that is to say, both for healthy and sick individuals. High expectations were also associated with the Human Genome Project (HGP), but as of today only a few have been realized. The HGP thus evolved in a context marked by biohype, i.e., the promotion of exaggerated or unrealistic benefits. Given the importance of expectations associated with the development of NGx and the methodological limitations faced by clinical research conducted in this area, the main objective of this thesis is to determine whether scientific publications reporting results from clinical research conducted in Ngx contribute to the emergence of a biohype phenomenon. More specifically, it will also document the perception of researchers working in this area concerning this phenomenon, try to identify factors that could explain its emergence in scientific literature specific to NGx and suggest ways of actions to mitigate the risks associated with this phenomenon.
We first conducted a document analysis of scientific articles reporting results from clinical research in NGx. This revealed that many benefits were promoted in the literature even though the methodological limitations were not necessarily presented or discussed. This observation led us to believe that the promoted benefits were potentially premature. We then sought to validate our findings among researchers working mainly in the field of NGx. Our survey revealed that researchers were generally in agreement with the benefits that we identified in the scientific articles. However, they did not consider that their realization was feasible in the medium term. This survey also revealed that the methodological limitations currently encountered in the conduct of clinical research raised doubts about the realistic outcome of the benefits promoted in scientific articles. These data confirm our observation that a biohype phenomenon is actually emerging in scientific articles reporting results of clinical research in NGx.
Besides information about the audiences targeted by researchers and the elements that need to be included in a scientific article, the survey also helped us better understand the advantages associated with the promotion of benefits. The majority of researchers interviewed found that the promotion of benefits in a scientific article would increase the chances of a manuscript being accepted for publication and also foster continuing funding of the research area. In a competitive environment such as biomedical research, the promotion of benefits seems to be an avenue taken to stand out from the field.
Although promoting premature or exaggerated benefits are not considered as being scientific misconduct, biohype can cause a weakening of the trust between the public and researchers. Ultimately, it can hinder the continuity of sound scientific research. Based on these findings, one of the strategies that could be use to prevent or mitigate the occurrence of the risks associated with biohype would be to increase awareness of the issue amongst researchers and scientific journal editors. Specifically, we encourage the integration of guidelines on the management of biohype within the codes of conduct that have been put in place to promote good practices in research.
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Sharing findings on sickle cell disorder in international collaborative biomedical research : an empirical ethics study in coastal KenyaMarsh, Victoria Mary Chuck January 2012 (has links)
Against the background of a dilemma experienced by researchers during a genomics study at an established biomedical research centre in Kenya, the broad aims of this thesis are to develop appropriate responses to important ethical questions on sharing information on a common and serious genetic condition, sickle cell disorder, and assess the responsibilities of researchers in this regard. Using an empirical approach to normative reflection across two phases of qualitative research, I explore the nature of important moral concerns related to sharing sickle cell disease information from researchers’ and community members’ points of view; and develop a bottom-up normative analysis around the questions generated. This analysis interweaves community experiences, processes of community reasoning and ex situ normative reflection; placing community views and values centrally while referencing these to wider ethical debates, commentaries and guidelines in the literature. Two main outputs of this thesis are to provide recommendations for information sharing on SCD findings in the genomics study in Kilifi; and to propose a set of key issues to consider for this type of information in other studies and geographic settings. I conclude that researchers have a strong responsibility to share SCD information on affected children with families as a form of ancillary service (validating tests, counselling and care); but less responsibility to actively share carrier information. Concurrent responsibilities are working collaboratively with the Ministry of Health/District General Hospital to plan and implement services for SCD; ensuring counselling services support family stability as far as reasonably possible; and to build forms of community engagement and informed consent that counter risks of diagnostic interpretations of research.
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Les rétractations et leurs conséquences sur la carrière des coauteurs : analyse bibliométrique des fraudes et des erreurs dans le domaine biomédicalMongeon, Philippe 09 1900 (has links)
Ces dernières années, la découverte de fraudes scientifiques majeures a créé des ondes de choc dans la communauté scientifique. Le nombre annuel de rétractations a considérablement augmenté, et la plupart sont dues à des cas de fraude. Bien qu’il soit généralement pris pour acquis que tous les coauteurs sont affectés par ces rétractations, l’objectif de cette étude est de vérifier cette présupposition empiriquement. Nous avons recensé toutes les rétractations du domaine biomédical (443) de 1996 à 2006 dans PubMed et mesuré, à l’aide du Web of Science (WOS), la productivité, l’impact et les pratiques de collaboration des coauteurs (1 818) sur une période de cinq ans avant et après la rétractation. Nos résultats montrent que les rétractations ont des conséquences sur la carrière des coauteurs, surtout au niveau du nombre de publications des années subséquentes. Cet impact est plus grand dans les cas de fraude, et pour les premiers auteurs. / Over the last few years, major cases of scientific fraud shocked the scientific community, and the number of retractions each year increased considerably. Scientific misconduct accounts for approximately more than half of those retractions. It is assumed that co-authors of retracted papers are affected by their colleagues’ misconduct, and the aim of this study is to provide empirical evidence of how researchers’ careers are affected by a retraction. We retrieved all (443) publications retracted from 1996 to 2006 from PubMed, signed by 1818 authors. Using the Web of Science (WOS), we measured the productivity, impact and collaboration of each of those authors for a period of five years before and after the retraction. Our results show that retractions affect the career of co-authors, mostly in terms of scientific output. This impact is felt more strongly in cases of fraud and for first authors.
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Mapping the unmappable in indigenous digital cartographiesBecker, Amy 01 May 2018 (has links)
This thesis draws on a community-engaged digital-mapping project with the Vancouver Island Coast Salish community of the Stz’uminus First Nation. In this paper, I discuss the ways in which conventional cartographic representations of Indigenous peoples are laden with methodological and visual assumptions that position Indigenous peoples’ perspectives, stories, and experiences within test-, proof-, and boundary-driven legal and Eurocentric contexts. In contrast, I frame this project’s methodology and digital mapping tools as an effort to map a depth of place, the emotional, spiritual, experiential, and kin-based cultural context that is routinely glossed over in conventional mapping practices. I argue elders’ place-based stories, when recorded on video and embedded in a digital map, produce a space for the “unmappable,” that which cannot, or will not, be expressed within the constructs of a static two-dimensional map. This thesis also describes a refusal to steep maps too deeply in cultural context for a public audience. I detail the conversations that emerged in response to a set of deeply spiritual, cultural, and personal stories to mark how the presence of Coast Salish law, customs, power structures, varying intra-community perspectives, and refusal came to bear on the production of “blank space” (interpreted colonially and legally as terra nullius) in this project’s cartographic representation. Finally, I conclude that Coast Salish sharing customs are embedded within networks of Coast Salish customary legal traditions, which fundamentally affects tensions that arise between storytelling and digital mapping technologies, between academic and community accountabilities, and between collective and individual consent. / Graduate / 2019-10-13
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Gruppennützige Forschung an Kindern und Jugendlichen / Ihre ethische und rechtliche Zulässigkeit unter besonderer Berücksichtigung der Bewertung von Vorsitzenden deutscher Ethikkommissionen / Non-therapeutic research in minors / Its ethical and legal legitimacy with special regard to the attitude of chair-persons of German Research Ethics CommitteesRadenbach, Katrin 09 January 2007 (has links)
No description available.
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Les rétractations et leurs conséquences sur la carrière des coauteurs : analyse bibliométrique des fraudes et des erreurs dans le domaine biomédicalMongeon, Philippe 09 1900 (has links)
Ces dernières années, la découverte de fraudes scientifiques majeures a créé des ondes de choc dans la communauté scientifique. Le nombre annuel de rétractations a considérablement augmenté, et la plupart sont dues à des cas de fraude. Bien qu’il soit généralement pris pour acquis que tous les coauteurs sont affectés par ces rétractations, l’objectif de cette étude est de vérifier cette présupposition empiriquement. Nous avons recensé toutes les rétractations du domaine biomédical (443) de 1996 à 2006 dans PubMed et mesuré, à l’aide du Web of Science (WOS), la productivité, l’impact et les pratiques de collaboration des coauteurs (1 818) sur une période de cinq ans avant et après la rétractation. Nos résultats montrent que les rétractations ont des conséquences sur la carrière des coauteurs, surtout au niveau du nombre de publications des années subséquentes. Cet impact est plus grand dans les cas de fraude, et pour les premiers auteurs. / Over the last few years, major cases of scientific fraud shocked the scientific community, and the number of retractions each year increased considerably. Scientific misconduct accounts for approximately more than half of those retractions. It is assumed that co-authors of retracted papers are affected by their colleagues’ misconduct, and the aim of this study is to provide empirical evidence of how researchers’ careers are affected by a retraction. We retrieved all (443) publications retracted from 1996 to 2006 from PubMed, signed by 1818 authors. Using the Web of Science (WOS), we measured the productivity, impact and collaboration of each of those authors for a period of five years before and after the retraction. Our results show that retractions affect the career of co-authors, mostly in terms of scientific output. This impact is felt more strongly in cases of fraud and for first authors.
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Taranaki waiata tangi and feelings for placeSmith, Ailsa Lorraine January 2001 (has links)
The occupation of Moutoa Gardens in 1995 highlighted efforts by Whanganui iwi to draw attention to the non-settlement of long-standing land grievances arising out of land confiscations by the Crown in New Zealand in the 1860s. Maori attitudes to land have not been well understood by successive New Zealand governments since that time, nor by many Pakeha New Zealanders. In an effort to overcome that lack of understanding, this thesis studies a particular genre of Maori composition; namely, waiata tangi or songs of lament, which contain a strong indigenous sense of place component. The waiata used in this study derive from my tribal area of Taranaki, which is linked historically and through whakapapa with Whanganui iwi. These waiata were recorded in manuscript form in the 1890s by my great-grandfather Te Kahui Kararehe, and are a good source from which to draw conclusions about the traditional nature of Maori feelings for place. Two strands run throughout this thesis. The first examines the nature of Maori feelings for place and land, which have endured through primary socialisation to the present day. By focusing upon a form of expression that reveals the attachment of Maori towards their ancestral homelands, it is hoped that the largely monocultural Pakeha majority in New Zealand will be made aware of that attachment. It is also hoped that Pakeha may be suitably informed of the consequences of colonialist intervention in the affairs of the Maori people since 1840, which have resulted in cultural deprivation and material disadvantage at the present day. In the current climate of government moves to address the problems bequeathed them by their predecessors, it is important that the settlement of land claims and waterways under the Treaty of Waitangi should proceed unhindered by misapprehension and misinformation on the part of the public at large. The second strand of my thesis concerns the waiata texts themselves, which I wish to bring to the attention of the descendants of the composers of those waiata, who may or may not know of their existence. Since so much of value has been lost to the Maori world it is important that the culturally precious items that remain should be restored as soon as possible to those to whom they rightfully belong. Key themes examined in this thesis are the nature of Maori "feelings" for place and a "sense" of place; Maori research methodologies and considerations, including Maori cosmology and genealogical lines of descent; ethical concerns and intellectual property rights; ethnographic writings from the nineteenth century which tried to make sense of Maori imagery and habits of thought; the Kahui Papers from which the waiata were drawn; and the content and imagery of the waiata themselves. I also discuss the use of hermeneutics as a methodological device for unlocking the meanings of words and references in the waiata, and present the results both from a western sense of place perspective and a Maori viewpoint based on cultural concepts and understandings.
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Taranaki waiata tangi and feelings for placeSmith, Ailsa Lorraine January 2001 (has links)
The occupation of Moutoa Gardens in 1995 highlighted efforts by Whanganui iwi to draw attention to the non-settlement of long-standing land grievances arising out of land confiscations by the Crown in New Zealand in the 1860s. Maori attitudes to land have not been well understood by successive New Zealand governments since that time, nor by many Pakeha New Zealanders. In an effort to overcome that lack of understanding, this thesis studies a particular genre of Maori composition; namely, waiata tangi or songs of lament, which contain a strong indigenous sense of place component. The waiata used in this study derive from my tribal area of Taranaki, which is linked historically and through whakapapa with Whanganui iwi. These waiata were recorded in manuscript form in the 1890s by my great-grandfather Te Kahui Kararehe, and are a good source from which to draw conclusions about the traditional nature of Maori feelings for place. Two strands run throughout this thesis. The first examines the nature of Maori feelings for place and land, which have endured through primary socialisation to the present day. By focusing upon a form of expression that reveals the attachment of Maori towards their ancestral homelands, it is hoped that the largely monocultural Pakeha majority in New Zealand will be made aware of that attachment. It is also hoped that Pakeha may be suitably informed of the consequences of colonialist intervention in the affairs of the Maori people since 1840, which have resulted in cultural deprivation and material disadvantage at the present day. In the current climate of government moves to address the problems bequeathed them by their predecessors, it is important that the settlement of land claims and waterways under the Treaty of Waitangi should proceed unhindered by misapprehension and misinformation on the part of the public at large. The second strand of my thesis concerns the waiata texts themselves, which I wish to bring to the attention of the descendants of the composers of those waiata, who may or may not know of their existence. Since so much of value has been lost to the Maori world it is important that the culturally precious items that remain should be restored as soon as possible to those to whom they rightfully belong. Key themes examined in this thesis are the nature of Maori "feelings" for place and a "sense" of place; Maori research methodologies and considerations, including Maori cosmology and genealogical lines of descent; ethical concerns and intellectual property rights; ethnographic writings from the nineteenth century which tried to make sense of Maori imagery and habits of thought; the Kahui Papers from which the waiata were drawn; and the content and imagery of the waiata themselves. I also discuss the use of hermeneutics as a methodological device for unlocking the meanings of words and references in the waiata, and present the results both from a western sense of place perspective and a Maori viewpoint based on cultural concepts and understandings.
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