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La communication des résultats de recherche en génétique : réflexion sur le point de vue de parents d'enfants souffrant d'autismeBaret, Laurence 08 1900 (has links)
La recherche en génétique est en pleine effervescence, créant ainsi plus d’information sur la susceptibilité génétique à certaines maladies et sur la préventions et les traitements potentiels. Nombre de ces informations sont considérées exploratoires et donc sans utilité clinique. Les directives officielles, qui prônent une divulgation des résultats globaux, tendent également de plus en plus vers la communication des résultats individuels quand ils sont disponibles et applicables. On parle même « d’impératif éthique » de la part du chercheur à retourner les résultats de recherche aux participants. La tâche, cependant, ne s’avère pas si simple et ce devoir moral émergent suscite de nombreuses questions, dont la responsabilité de retourner l'information, le moment, le contenu de l’information, le respect du droit du participant de ne pas savoir.
Par cette étude, l’opinion et les attentes des participants à la recherche sont investiguées. Il s’agit plus précisément de documenter de façon empirique les attentes des parents d’enfants autistes qui ont fait participer leur enfant à une étude génétique sur l’autisme. Il est essentiel et important d’explorer leurs besoins et leurs attentes concernant la façon dont ils aimeraient qu’on les informe sur les résultats de l'étude et plus spécifiquement sur les résultats qui les concernent.
Le but de cette étude est de proposer une réflexion éthique sur le retour d’information aux participants à la recherche. Est-ce une responsabilité éthique? Un droit?
La divulgation des résultats généraux ou individuels de recherche aux participants constitue un véritable défi résultant des grandes attentes entourant la recherche en génétique et de la situation de vulnérabilité dans laquelle se retrouvent les participants à la recherche. / Genetics studies are becoming increasingly prevalent leading to a growing body of
information on disease susceptibility with the potential to improve health care. Many of
these results are considered exploratory with no clinical utility. Official guidelines in ethics, advocating a disclosure of global results, also tend increasingly towards the communication
of individual results when available and applicable if the research participant choose so. An "ethical imperative" to return research results is increasingly acknowledged in research ethics guidelines. This emerging moral duty raises many questions including the issue of whether and how research participants might receive their individual results.
In this study, we explore the perspectives of parents of an autistic child participating
in genetic research. It is essential and important to explore their needs and expectations about how they would like to be delivered research results.
The purpose of this study is to propose an ethical reflexion on providing individual
genetic research results to participants: is there a duty ? a right ?
Providing individual genetic research results to participants is a key challenge. We expect to find major challenges in matters of return of result given both the high expectations surrounding genetic research and the vulnerable state of some
patients/research participants.
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Seleção de pacientes e recrutamento dos sujeitos da pesquisa: implicações éticas e jurídicas no âmbito das Instituições de Ensino Superior públicas - uma visão sob a ótica do Código de Defesa do Consumidor / Patient selection and recruitment of research subjects: ethical and legal implications in the context of the public higher education institutions - a view from the perspective of the Consumer Protection CodeEnio Trujillo 03 June 2016 (has links)
Os sujeitos da pesquisa, em razão de seu estado de vulnerabilidade, reclamam por cuidados éticos e jurídicos. Esta tutela deve anteceder ao status em que o sujeito da pesquisa ainda não está caracterizado como tal, ou seja, quando, como paciente, participa de seleções para integrar experimentos, no caso, promovidos por Instituições de Ensino Superior públicas (IES). No aspecto jurídico, pacientes, sujeitos da pesquisa e comunidade científica foram colocados sob a égide do Código de Defesa do Consumidor a fim de se apurar a tutela desse diploma legal sobre referidas figuras. Em face dessa abordagem ética e jurídica, este estudo teve como objetivo, por meio de uma revista da literatura, desenvolver uma análise crítica sobre a formatação atual utilizada pelas IES pública para recrutamento de sujeitos da pesquisa, através de seus pacientes pré-concebidos; mensurar a importância da formalização de edital pela IES pública nesse contexto de recrutamento. Analisar, ainda, a dicotomia jurídica desenvolvida em torno do Código de Defesa do Consumidor pertinente ao paciente atendido pela IES Pública, por intermédio do SUS e o paciente atendido pela IES privada não submetido ao SUS. Por fim, conferir sob a ótica do Código de Defesa do Consumidor a responsabilidade civil da comunidade científica em decorrência de danos causados ao sujeito da pesquisa. Trata-se de um estudo exploratório e descritivo, com abordagem qualitativa desenvolvida a partir de pesquisas em material existente na literatura nacional e internacional, pertinente à pesquisa envolvendo seres humanos, a sua forma de recrutamento e a responsabilidade civil suscitada em face dos sistemas de saúde público e privado e, não menos, sobre a relação jurídica desenvolvida entre sujeito da pesquisa e comunidade científica. Especificamente, a fundamentação teórica se deu sobre a doutrina da bioética, do biodireito e da ordem jurisdicional, com fomento da legislação brasileira. Foram utilizadas as bases de dados Pubmed, Scielo, Lilacs, Google Acadêmico, Google e Tribunais de Justiça, com a combinação dos seguintes descritores: seleção de pacientes, sujeitos da pesquisa, defesa do consumidor, ética em pesquisa e academia e institutos. Considera-se, ao final, que na IES pública o recrutamento de sujeitos da pesquisa não deve configurar coerção tácita, sendo superlativa a valoração de conceitos éticos intrínsecos à dignidade humana, restando-lhe, ainda a observância de princípios constitucionais referente à administração pública. Nesse âmbito público, a necessidade de edital é requisito formalístico, imperioso para recrutamento de sujeito da pesquisa. Tanto o sistema público de saúde, promovido pela IES pública, como o sistema privado de saúde, promovido pela IES privada, estão sob a tutela do Código de Defesa do Consumidor; ainda devendo ficar sob o pálio deste diploma legal a relação jurídica desenvolvida entre sujeito da pesquisa e comunidade científica. / Human research subjects, due to their vulnerability status, claim to ethical and legal care. This protection must precede the status in which the research subject is not characterized as such, that is when, as a patient, attends selections to integrate experiments in the case, promoted by Public Higher Education Institutions (HEI). In the legal aspect, patients, research subjects and scientific community were placed under the aegis of the Consumer Protection Code in order to establish the tutelage of this statute on those figures. Faced with this ethical and legal approach, this study aimed, through a literature review, develop a critical analysis of the current format used by public HEIs to the recruitment of research subjects, through their predesigned patients; measure the importance of the announcement of the formal public HEIs in this recruitment context. Also, analyze the legal dichotomy developed around the Consumer Protection Code relevant to patients attended by public HEIs, through the Brazilian Public System of Health (BSH) and the patient treated by the private institution not subjected to the BSH. Finally, check, from the perspective of the Consumer Protection Code, the liability of the scientific community due to damages caused to the research subject. This is an exploratory and descriptive study with qualitative approach, developed from research into existing material in national and international literature, relevant to researches involving human beings, their form of recruitment and liability raised in the face of public and private system of health and, not least, on the legal relationship developed between the research subject and the scientific community. Specifically, the theoretical foundation took over the doctrine of bioethics, the bio law and court order, fostering by the Brazilian law. Databases used were Pubmed, Scielo, Lilacs, Google Scholar, Google and Courts of Justice, with the combination of the following descriptors: Patient Selection, Research Subjects, Consumer Advocacy, Ethics, Research and Academies and Institutes. In the end, is considered that in the public HEI, the research subject recruitment should not configure tacit coercion, being superlative the valuation of intrinsic ethical concepts of human dignity, leaving him, yet compliance with constitutional principles relating to public administration. In this public sphere, the need for notice is formalistic requirement imperative for the recruitment of research subjects. Both systems of health, as public promoted by public HEIs, as the private promoted by the private HEIs are under the authority of the Consumer Protection Code; should still be under the canopy of this instrument the legal status developed between the research subject and the scientific community.
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Seleção de pacientes e recrutamento dos sujeitos da pesquisa: implicações éticas e jurídicas no âmbito das Instituições de Ensino Superior públicas - uma visão sob a ótica do Código de Defesa do Consumidor / Patient selection and recruitment of research subjects: ethical and legal implications in the context of the public higher education institutions - a view from the perspective of the Consumer Protection CodeTrujillo, Enio 03 June 2016 (has links)
Os sujeitos da pesquisa, em razão de seu estado de vulnerabilidade, reclamam por cuidados éticos e jurídicos. Esta tutela deve anteceder ao status em que o sujeito da pesquisa ainda não está caracterizado como tal, ou seja, quando, como paciente, participa de seleções para integrar experimentos, no caso, promovidos por Instituições de Ensino Superior públicas (IES). No aspecto jurídico, pacientes, sujeitos da pesquisa e comunidade científica foram colocados sob a égide do Código de Defesa do Consumidor a fim de se apurar a tutela desse diploma legal sobre referidas figuras. Em face dessa abordagem ética e jurídica, este estudo teve como objetivo, por meio de uma revista da literatura, desenvolver uma análise crítica sobre a formatação atual utilizada pelas IES pública para recrutamento de sujeitos da pesquisa, através de seus pacientes pré-concebidos; mensurar a importância da formalização de edital pela IES pública nesse contexto de recrutamento. Analisar, ainda, a dicotomia jurídica desenvolvida em torno do Código de Defesa do Consumidor pertinente ao paciente atendido pela IES Pública, por intermédio do SUS e o paciente atendido pela IES privada não submetido ao SUS. Por fim, conferir sob a ótica do Código de Defesa do Consumidor a responsabilidade civil da comunidade científica em decorrência de danos causados ao sujeito da pesquisa. Trata-se de um estudo exploratório e descritivo, com abordagem qualitativa desenvolvida a partir de pesquisas em material existente na literatura nacional e internacional, pertinente à pesquisa envolvendo seres humanos, a sua forma de recrutamento e a responsabilidade civil suscitada em face dos sistemas de saúde público e privado e, não menos, sobre a relação jurídica desenvolvida entre sujeito da pesquisa e comunidade científica. Especificamente, a fundamentação teórica se deu sobre a doutrina da bioética, do biodireito e da ordem jurisdicional, com fomento da legislação brasileira. Foram utilizadas as bases de dados Pubmed, Scielo, Lilacs, Google Acadêmico, Google e Tribunais de Justiça, com a combinação dos seguintes descritores: seleção de pacientes, sujeitos da pesquisa, defesa do consumidor, ética em pesquisa e academia e institutos. Considera-se, ao final, que na IES pública o recrutamento de sujeitos da pesquisa não deve configurar coerção tácita, sendo superlativa a valoração de conceitos éticos intrínsecos à dignidade humana, restando-lhe, ainda a observância de princípios constitucionais referente à administração pública. Nesse âmbito público, a necessidade de edital é requisito formalístico, imperioso para recrutamento de sujeito da pesquisa. Tanto o sistema público de saúde, promovido pela IES pública, como o sistema privado de saúde, promovido pela IES privada, estão sob a tutela do Código de Defesa do Consumidor; ainda devendo ficar sob o pálio deste diploma legal a relação jurídica desenvolvida entre sujeito da pesquisa e comunidade científica. / Human research subjects, due to their vulnerability status, claim to ethical and legal care. This protection must precede the status in which the research subject is not characterized as such, that is when, as a patient, attends selections to integrate experiments in the case, promoted by Public Higher Education Institutions (HEI). In the legal aspect, patients, research subjects and scientific community were placed under the aegis of the Consumer Protection Code in order to establish the tutelage of this statute on those figures. Faced with this ethical and legal approach, this study aimed, through a literature review, develop a critical analysis of the current format used by public HEIs to the recruitment of research subjects, through their predesigned patients; measure the importance of the announcement of the formal public HEIs in this recruitment context. Also, analyze the legal dichotomy developed around the Consumer Protection Code relevant to patients attended by public HEIs, through the Brazilian Public System of Health (BSH) and the patient treated by the private institution not subjected to the BSH. Finally, check, from the perspective of the Consumer Protection Code, the liability of the scientific community due to damages caused to the research subject. This is an exploratory and descriptive study with qualitative approach, developed from research into existing material in national and international literature, relevant to researches involving human beings, their form of recruitment and liability raised in the face of public and private system of health and, not least, on the legal relationship developed between the research subject and the scientific community. Specifically, the theoretical foundation took over the doctrine of bioethics, the bio law and court order, fostering by the Brazilian law. Databases used were Pubmed, Scielo, Lilacs, Google Scholar, Google and Courts of Justice, with the combination of the following descriptors: Patient Selection, Research Subjects, Consumer Advocacy, Ethics, Research and Academies and Institutes. In the end, is considered that in the public HEI, the research subject recruitment should not configure tacit coercion, being superlative the valuation of intrinsic ethical concepts of human dignity, leaving him, yet compliance with constitutional principles relating to public administration. In this public sphere, the need for notice is formalistic requirement imperative for the recruitment of research subjects. Both systems of health, as public promoted by public HEIs, as the private promoted by the private HEIs are under the authority of the Consumer Protection Code; should still be under the canopy of this instrument the legal status developed between the research subject and the scientific community.
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Défis techniques, problèmes éthiques : repenser l'éthique de la recherche en génomique humaine à l'ère des infrastructures de recherche / Technical challenges, ethical issues : rethinking the ethics of genomics research in the age of research infrastructuresSoulier, Alexandra 13 October 2017 (has links)
Dans le champ de la recherche en génomique, comme dans d'autres domaines très informatisés, les bases de données et les biobanques sont organisées en infrastructures. Ce nouveau modèle organisationnel doit permettre de soutenir l'effort technique et collaboratif requis pour traiter des Big Data, c'est-à-dire des jeux de données trop volumineux et complexes pour être traités en utilisant les méthodes classiques. L'établissement de ces nouveaux environnements constitue un véritable défi technique et philosophique. Il requiert, pour être opérationnel, des cadres réglementaires adaptés, ouverts à la fois à l'internationalisation et à des perspectives de long terme, mais certains de ces changements ne sont pas compatibles avec les procédures éthiques courantes, notamment la procédure de consentement éclairé. L'éthique de la recherche en génomique doit donc être repensée. Faut-il puiser dans la technique les nouvelles solutions de gouvernance de la recherche ? Ou bien est-il plus juste de répondre à ces évolutions en analysant les situations de tension morale suscitées par de nouveaux développements et en décidant de les traiter en fonction de ce à quoi nous tenons collectivement ? L'enjeu de ce travail, qui relève d'une approche pragmatiste, consiste à cultiver une attitude réflexive à propos des changements en cours dans la recherche en génomique. Cette tâche suppose d'expliciter le rôle des biobanques et des bases de données dans la production, la validation et la publication de la recherche génomique. Il est également nécessaire de rendre compte des tensions auxquelles le développement de ces dispositifs donne lieu lorsqu'ils sont incompatibles avec les procédures actuelles. On peut alors examiner si les dispositifs tels qu'ils sont conçus sont désirables dans les contextes où ils sont développés, soulignant ainsi la dimension politique de l'éthique de la recherche. Cette thèse repose sur l'analyse de situations concrètes issues de projets de recherche dans lesquels nous avons été impliquée. Nous utilisons aussi plusieurs disciplines étudiant la science telle qu'elle se fait (philosophie, anthropologie, sociologie et histoire). Au cours de cet examen, l'idée régulatrice de personne-membre est proposée, pour favoriser la prise en compte des appartenances sociales et politiques du sujet de l'éthique de la recherche en génomique. / In genomic research, as in other highly computerised scientific fields, databases and biobanks are today (re-)organised into infrastructures. This new organisational model should support the technical and collaborative effort needed to deal with Big Data, that is, data sets that are too large and too complex to be treated with conventional methods. Establishing these new environments is an actual technical challenge that requires, in order to be operational, appropriate regulatory frameworks that are both open to internationalisation and long-term prospects. But some of these changes are not consistent with current ethics procedures, including the informed consent process. The ethics of genomics research must therefore be reconsidered by asking whether it is in technology that we must draw new solutions for the governance of research or whether we must respond to these evolutions by proposing a political treatment to clarify what we value collectively. This work, which is based on a pragmatist approach, intends to cultivate a reflexive attitude on the changes being made in genomic research by describing situations of moral tension. This requires elucidating the role of biobanks and databases in the production, validation and publication of genomic research; accounting for the conflicts of values to which the development of these devices can give rise when they are incompatible with the current procedures and thus to examine whether the devices as conceived are desirable in the contexts where they are developed. This thesis is based on the analysis of concrete situations, resulting from research projects in which we have been involved or from studies of science in practices (philosophy, anthropology, sociology and history). During this examination, the regulatory idea of a person-member is proposed, in order to favor the consideration of the social and political affiliations of the subject of ethics to research in genomics.
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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. / "Mémoire présenté à la Faculté des études supérieures en vue de l'obtention du grade de Maîtrise en droit (LL.M.) Option droit, biotechnologies et société". Ce mémoire a été accepté à l'unanimité et classé parmi les 10% des mémoires de la discipline. Commentaires du jury : "Mémoire de très haute tenue. Recherche exhaustive. Traitement cohérent du sujet. Approche souvent innovatrice".
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La communication des résultats de recherche en génétique : réflexion sur le point de vue de parents d'enfants souffrant d'autismeBaret, Laurence 08 1900 (has links)
La recherche en génétique est en pleine effervescence, créant ainsi plus d’information sur la susceptibilité génétique à certaines maladies et sur la préventions et les traitements potentiels. Nombre de ces informations sont considérées exploratoires et donc sans utilité clinique. Les directives officielles, qui prônent une divulgation des résultats globaux, tendent également de plus en plus vers la communication des résultats individuels quand ils sont disponibles et applicables. On parle même « d’impératif éthique » de la part du chercheur à retourner les résultats de recherche aux participants. La tâche, cependant, ne s’avère pas si simple et ce devoir moral émergent suscite de nombreuses questions, dont la responsabilité de retourner l'information, le moment, le contenu de l’information, le respect du droit du participant de ne pas savoir.
Par cette étude, l’opinion et les attentes des participants à la recherche sont investiguées. Il s’agit plus précisément de documenter de façon empirique les attentes des parents d’enfants autistes qui ont fait participer leur enfant à une étude génétique sur l’autisme. Il est essentiel et important d’explorer leurs besoins et leurs attentes concernant la façon dont ils aimeraient qu’on les informe sur les résultats de l'étude et plus spécifiquement sur les résultats qui les concernent.
Le but de cette étude est de proposer une réflexion éthique sur le retour d’information aux participants à la recherche. Est-ce une responsabilité éthique? Un droit?
La divulgation des résultats généraux ou individuels de recherche aux participants constitue un véritable défi résultant des grandes attentes entourant la recherche en génétique et de la situation de vulnérabilité dans laquelle se retrouvent les participants à la recherche. / Genetics studies are becoming increasingly prevalent leading to a growing body of
information on disease susceptibility with the potential to improve health care. Many of
these results are considered exploratory with no clinical utility. Official guidelines in ethics, advocating a disclosure of global results, also tend increasingly towards the communication
of individual results when available and applicable if the research participant choose so. An "ethical imperative" to return research results is increasingly acknowledged in research ethics guidelines. This emerging moral duty raises many questions including the issue of whether and how research participants might receive their individual results.
In this study, we explore the perspectives of parents of an autistic child participating
in genetic research. It is essential and important to explore their needs and expectations about how they would like to be delivered research results.
The purpose of this study is to propose an ethical reflexion on providing individual
genetic research results to participants: is there a duty ? a right ?
Providing individual genetic research results to participants is a key challenge. We expect to find major challenges in matters of return of result given both the high expectations surrounding genetic research and the vulnerable state of some
patients/research participants.
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Three-partner dancing: placing participatory action research into practice within and indigenous, racialised & academic spaceChow, Winnie 16 August 2007 (has links)
Historically, most research on Indigenous peoples has been framed by Western empirical positivism which fundamentally conflicts with Indigenous circular ways of knowing. Current research governing bodies, scholars, and Indigenous communities have generated new theories and guidelines for research structures that support respectful and meaningful practices with Indigenous peoples. Participatory action research (PAR) attempts to address the unequal power structures inherent in research relationships: participants set the agenda for the research and are co-researchers in the project. In this study, I placed PAR theory into action to problematize research practices and to generate new discourses for research within an Indigenous context.
The Lil’wat Nation and I collaborated on a PAR project in 2006-2007 that led to the formation of the Lil’wat Girls’ and Women’s Affirmation Group. Through the process of reflection-in-action we identified several opportunities for growth as we examined PAR theory in practice. Using decolonizing research methods and a metaphor of the Lil’wat s7istken (pit house), the model of practice wove between three distinct worlds with divergent protocols and pedagogies: the worlds of the Lil’wat, academia, and the researcher’s racialized lived experiences. This model of practice aimed to disrupt the essentialized dichotomies of Indigenous and non-Indigenous relationships and to problematize research practices for the academic and research communities to consider for their practice. The findings exposed several lessons at sites of praxis pertaining to the intersection of PAR theory and practice: definition of the community; ethics in the community; racialized researcher space; and PAR incongruence. The model was intended not as a “how to” manual, but as an entry point for discussions to advance respectful decolonizing research practices.
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Autonomie et consentement éclairé à la participation aux biobanques : entre fondements philosophiques de l’éthique de la recherche et de l'éthique de la santé publiqueLeBlanc, Camille 08 1900 (has links)
Ce mémoire de maîtrise tente de répondre à la question suivante : quelle est la valeur de
l’autonomie dans le domaine de la recherche biomédicale, et plus particulièrement dans le
contexte des biobanques? Pour éclairer cette question, nous étudierons le concept d’autonomie
dans deux domaines d’éthique appliquée : l’éthique de la recherche et l’éthique de la santé
publique. Depuis la deuxième moitié du XXe siècle, le respect de l’autonomie individuelle est un
principe programmatique de l’éthique de la recherche. Or, sa conceptualisation a été accusée
d’être trop individualiste pour répondre aux enjeux qui caractérisent la recherche en santé
d’aujourd’hui. En éthique de la santé publique, au contraire, l’autonomie individuelle prend une
place moins prépondérante et fait droit à des dimensions sociopolitiques de l’autonomie qui ont
été négligées par le domaine de l’éthique de la recherche. Ces dimensions mettent en lumière le
rôle des institutions dans la promotion de l’autonomie tout comme l’importance pour les
individus d’avoir la possibilité de participer à l’élaboration des politiques de santé qui les
concernent pour réaliser leur autonomie. Le cas de la recherche en contexte de biobanques sera
l’occasion d’appliquer ces différentes conceptualisations de l’autonomie à un domaine de
recherche en pleine expansion qui se situe au carrefour de l’éthique de la recherche et de
l’éthique de la santé publique. / This master's thesis attempts to answer the following question: what is the value of autonomy in
biomedical research, and more particularly in the context of biobanks? To answer this question,
we will study the concept of autonomy in two areas of applied ethics: research ethics and public
health ethics. Since the second half of the 20th century, respect for individual autonomy has been
a programmatic principle of research ethics. However, many authors consider this
conceptualization to be too individualistic to respond to the challenges that characterize health
research today. In public health ethics, on the contrary, individual autonomy takes a less
preponderant role and acknowledges some socio-political dimensions of autonomy that have been
neglected by the field of research ethics. These dimensions highlight the role of institutions in
promoting autonomy as well as the need for individuals to have the opportunity to participate in
the development of health policies in order to achieve their autonomy. Finally, the case study of
biobanks will provide an opportunity to apply these different conceptualizations of autonomy to a
rapidly expanding field of research located at the crossroads between research ethics and public
health.
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Analysing Best High-Performance Sports Management Practices to Develop Guidelines for Historically Disadvantaged InstitutionsCloete, Elmien January 2021 (has links)
Magister Artium (Sport, Recreation and Exercise Science) - MA(SRES) / High-performance sport is characterised by the effective amalgamation and synergy of elements, including financial and managerial support, coaching, sport sciences and sports medicine support, talent identification and athlete pathways, training facilities and equipment, and competitions. Universities have increasingly become hubs for high-performance sports services, used by students and non-students alike. According to Dr Ralph Richards, a senior research consultant for Sport Australia, most university students are in their late teens to early 20s, which is also a critical demographic for elite sports performance. Universities can and do have a substantial impact on the sports sector, particularly in supporting and developing elite student-athletes through quality facilities and infrastructure, supportive programming, competitive opportunities, and sports bursaries or scholarships. In recent years, the high-performance sport has firmly established itself as a modern industry at some top- performing South African Universities. Since the Varsity Cup and Varsity Sport’s inception, South African Institutions have invested more in developing the sport to win competitions. However, many institutions, especially Historically Disadvantaged Institutions, do not establish athletic performance pathways. The study aimed to create guidelines for the best high-performance sport management practices and analysed successful international and local systems. The Spliss Model (a theoretical model of 9 pillars of sport policy factors influencing international success) provided the theoretical framework for this study. This study used a purely qualitative approach informed by an extensive literature review. This was followed by face-to-face semi-structured interviews with the high-performance sports directors and directors of sport at Universities and sports organisations in South Africa who currently have high-performance sports units. The data were transcribed verbatim and analysed through the lens of the SPLSS model. A thematic analysis was conducted to identify the best practices for high-performance sport at Historically Disadvantaged Institutions. The key findings showed that the best practices for high-performance sports systems included proper governance, appropriate funding, training facilities, quality coaching, sport science support services, academic support services and opportunities to compete. Ethics considerations were observed where the anonymity of the participants was upheld by way of using pseudonyms after permission from them were obtained. Permission to conduct the study was obtained from the University of the Western Cape Humanities and Social Sciences Research Ethics Committee.
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Fair Food: Justice and Sustainability in Community NutritionFlamm, Laura Jayne 24 April 2010 (has links)
No description available.
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