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Biobanks and informed consent : An anthropological contribution to medical ethicsHoeyer, Klaus January 2004 (has links)
Background: 1985 saw the beginnings of a population-based biobank in Västerbotten County, Sweden. In 1999, a start-up genomics company, UmanGenomics, obtained ‘all commercial rights’ to the biobank. The company introduced an ethics policy, which was well received in prestigious journals, focusing on public oversight and informed consent. Aims: To explore how social anthropology can aid understanding of the challenges posed by the new role of the biobank in Västerbotten, and thus complement more established traditions in the field of medical ethics. An anthropological study of the ethics policy was executed. Theoretical perspective: Inspired by the anthropology of policy and social science perspectives on ethics and morality, the policy was studied at three analytical levels: policymakers (who formulate the policy), policy workers (who implement the policy, primarily nurses who obtain informed consent) and target group (for whom and on whom the policy is supposed to work: the potential donors to the biobank). Methods: Policymakers, nurses, and potential donors were interviewed, donations observed, and official documents analysed to mirror the moral problematizations made at the three levels in each other and to study the practical implications of the policy. To extend the reliability of the findings two surveys were executed: one among the general population, one among donors. Results: The qualitative studies show that policymakers distinguish between blood and data differently to potential donors. Informed consent seems more important to policymakers than potential donors, who are more concerned about political implications at a societal level. Among the respondents from the survey in the general public, a majority (66.8%) accepted surrogate decisions by Research Ethics Committees; a minority (4 %) stated informed consent as a principal concern; and genetic research based on biobank material was generally accepted (71%). Among the respondents to the survey in donors, 65% knew they had consented to donate a blood sample, and 32% knew they could withdraw their consent; 6% were dissatisfied with the information they had received; and 85% accepted surrogate decisions by Research Ethics Committees. Discussion: The ethics policy constitutes a particular naming and framing of moral problems in biobank-based research which overemphasises the need for informed consent, and underemphasises other concerns of potential donors. This embodies a political transformation where access to stored blood and medical information is negotiated in ethical terms, while it also has unacknowledged political implications. In particular, the relations between authorities and citizens in the Swedish welfare state are apparently transforming: from mutual obligation to individual contracts. Conclusion: Anthropology contributes to medical ethics with increased awareness of the practical implications of particular research ethical initiatives. This awareness promotes appreciation of the political implications of ethics policies and raises new issues for further consideration.
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Ethical Adaptation to Sea Level Rise: The Planner’s PerspectiveWedin, Anna January 2021 (has links)
This thesis addresses local adaptation to climate change-induced sea level rise, taking an ethical perspective and focusing at the role of planning and the planner. The research, which has been conducted within a transdisciplinary research project, takes a bottom-up approach to applied ethics, and relies to a great extent on empirical data. In doing this, it contributes to the growing field of ethics of climate change adaptation, with results that can be of interest to both ethicists and planners. The thesis consists of an introductory chapter and three articles. Article 1: Departing from an interview study with planners working with adaptation to sea level rise in Sweden, a typology of ethical issues is presented. It is shown that planners have to deal with input-oriented, process-oriented, and outcome-oriented ethical issues, and that knowledge of these can contribute to ethical adaptation policy. Article 2: A method building on Value Sensitive Design (VSD) and scenario planning is developed and applied to address the challenge of integrating ethics when planning for uncertainty over long time- horizons, in the context of adaptation to sea level rise. The method consists of three steps for scenario development and three steps for value investigations. The application resulted in insights on aspects important for an ethical long-term adaptation to sea-level rise. Article 3: Responsibility of adaptation to sea level rise is often assigned to local planners. But what does it mean to be responsible? Departing from the idea of professional virtues, three codes of ethics for planners are analysed to extract aspirational characteristics for planners. The identified virtues are put in relation to central challenges of adaptation, where five virtues stand out as central to the understanding of what it means to be responsible in adaptation to sea level rise. / Den har avhandlingen behandlar etiska aspekter i anpassning till stigande havsnivåer. Som en följd av klimatforändringarna stiger havsnivåerna, vilket utsätter kustnära samhällen for stora risker. För att minimera dessa risker kan vi antingen minska våra utslapp och begransa klimatförändringarna (detta kallas på engelska for mitigation), eller så kan vi anpassa oss till förandringarna vi star inför. Anpassning till stigande havsnivåer kan bland annat ta form av hårda skydd som murar mot havet, ekosystembaserade skydd som mangroveskogar, eller genom att flytta samhällen och människor från riskzoner, en sa kallad planerad reträtt. Det som är karakteristiskt för anpassning till stigande havsnivåer är att det i stor utsträckning handlar om ingrepp i den byggda miljön, vilket gör att anpassning till stigande havsnivåer på många sätt kan betraktas som en sorts fysisk planering. I de flesta samhällen kommer anpassning innebära en kombination av insatser, och när anpassningsstrategier formuleras kommer det behövas tas hänsyn till mål- och värdekonflikter. I och med detta kan anpassning till klimatförandringarna och till stigande havsnivåer uppfattas som etisk till sin natur. En etisk analys kan bidra med att systematisera rätt och fel och bistå med verktyg for att fatta välmotiverade beslut. Trots detta har förhallandevis lite forskning inriktat sig på just etisk anpassning till stigande havsnivåer. Denna avhandling bidrar med etiska analyser av anpassning till stigande havsnivåer, med särskild inriktning på lokal anpassning och planerarens roll i anpassningsprocessen. Forskningen som presenteras har genomförts inom det tvärvetenskapliga forskningsprojektet Sea-rims (Sustainable and ethical adaptation to rising mean sea levels) som drivs av filosofiska avdelningen på KTH tillsammans med Statens Geotekniska Institut (SGI). Projektgruppen har tillsammans med ett antal projektpartners från sydsvenska kommuner och länsstyrelser, samt en referensgrupp med representanter från myndigheter som arbetar med anpassning till stigande havsnivåer, utforskat etiska dimensioner av de problem som projektmedlemmarna står infor. Avhandlingen kan därmed ses som ett exempel på tillampad etik, med ett tydligt nedifrån-perspektiv på de etiska frågeställningarna. / <p>QC 210519</p>
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Human Dignity : A Study in Medical EthicsMorberg Jämterud, Sofia January 2016 (has links)
Human dignity is an enunciated ethical principle in many societies, and it has elicited a great deal of interest, not least because it is central in health care. However, it has also been the subject of criticism. Some have argued that it is sufficient to rely on a principle of autonomy, and that dignity is a redundant principle or concept in health care. Other discussions have focused on the precise meaning of dignity, and how a principle of dignity should be interpreted and applied. This dissertation discusses questions on the principle of dignity and the meaning of the concept. In addition to a theoretical analysis of these questions, a qualitative research study has been carried out, based on interviews with physicians in palliative and neonatal care, and hospital chaplains, looking at dignity at the beginning and end of life. This dissertation can be categorised as empirical ethics because of its methodological approach. Based on a narrative analysis of the interviews, the results from the study shed light on the theoretical discussion on dignity. Through the history of ideas, dignity has often been linked to human abilities such as autonomy and rationality. However, autonomy is only one of the aspects which emerged from the qualitative research in this dissertation. Other aspects introduced into the discussion on dignity include human vulnerability, interdependence and the responsibility to face vulnerability in others. Some theoretical perspectives on dignity are criticised in the light of the empirical results. Furthermore, the dissertation includes a theological perspective where a Christological view – connected to Bakhtin’s ethics of responsibility – forms a critique to both the Kantian deontological perspective and dignity acquired by virtue. The dissertation also considers how the results can be applied to medical practice.
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A comprehensive picture of ethical values in caring encounters, based on experiences of those involved : Analysis of concepts developed from empirical studiesJonasson, Lise-Lotte January 2011 (has links)
Older people should have a life with a sense of value and should feel confident. These ethical values, which are expressed in normative ethics, are expected to prevail in empirical ethics. Central components of nursing are the ethical issues of autonomy, beneficence, non-maleficence and the principles of justice. The general aim of this thesis is to identify and describe the ethical values that are apparent in the caring encounter and their influence on the people involved. This is done from the perspective of the older person in study (I), next of kin in study (II) and nurses in study (III). In study (IV) the aim was to synthesize the concepts from empirical studies (I- III) and analyze, compare and interrelate them with normative ethics. Studies (I, III) were empirical observational studies including follow-up interviews. Twenty-two older people participated voluntarily in study (I), and in study (III) 20 nurses participated voluntarily. In study (II) fourteen next of kin were interviewed. In studies (I- III) constant comparative analysis, the core foundation of grounded theory, was used. Five concepts were used in the analysis in study (IV); three from the grounded theory studies (I- III) and two from the theoretical framework on normative ethics i.e. the ICN code and SFS law. Five categories; being addressed, receiving respect, desiring to participate, increasing self-determination and gaining self-confidence formed the basis for the core category ‚Approaching‛ in study (I). ‘Approaching’ indicates the ethical values that guide nurses in their caring encounters with older people. These ethical values are noted by the older people and are greatly appreciated by them, and also lead to improved quality of care. Four categories were identified in study (II): Receiving, showing respect, facilitating participation and showing professionalism. These categories formed the basis of the core category ‚Being amenable‛, a concept identified in the next of kin’s description of the ethical values that they and the older patients perceive in the caring encounter. In study (III), three categories were identified: showing consideration, connecting, and caring for. These categories formed the basis of the core category ‚Corroborating‛. Corroborating deals with support and interaction. Empirical ethics and normative ethics are intertwined, according to the findings of this study (IV). Normative ethics influence the nurse’s practical performance and could have a greater influence in supporting nurses as professionals. Criteria of good ethical care according to this thesis are: showing respect, invitation to participation, allowing self-determination, and providing safe and secure care. These criteria are elements of the concept of being professional. Professionalism of nurses is shown by: the approach nurses adapt to the performance of their duties, and their competence and knowledge, but also how they apply laws and professional codes
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Exploration medizinethischer Implikationen individualisierter Medizin beim lokal fortgeschrittenen Rektumkarzinom aus Sicht von Ärzten und Forschern - eine empirisch-ethische Untersuchung / Exploration of physicians’ and researchers’ understanding of the implications of individualized prognostics and diagnostics of the locally advanced colorectal cancer on medical ethics. An ethical-empirical studyHeßling, Arndt Christian 07 July 2014 (has links)
No description available.
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Les vases communicants : une ethnographie des services reproductifs transfrontaliers au Canada / Communicating vessels : an ethnography of cross-border reproductive care in CanadaCouture, Vincent January 2018 (has links)
Les services reproductifs transfrontaliers (SRT) réfèrent au déplacement d'une juridiction à une autre, de personnes ou de matériel reproductif dans le cadre d'un projet de procréation assistée (PA). Ce phénomène a été observé dans de nombreux pays, mais le système de PA mondialisé canadien, ou reproscape, demeure sous-étudié. Ce manque de connaissances nuit au développement normatif en matière de PA. En adoptant un cadre conceptuel issu de l'anthropologie médicale, l'objectif général de cette thèse était de décrire et comprendre le reproscape canadien. Pour alimenter la réflexion éthique et juridique et la prestation des services de PA, nous avons réalisé une enquête ethnographique clinique multisite combinant : (1) une revue de la littérature, (2) l'observation participante et non participante de deux cliniques de fertilité (Québec et Ontario), d'une agence d'importation de gamètes et d'une dizaine de congrès scientifiques, ainsi que (3) des entrevues semi-dirigées avec 45 actrices et acteurs des SRT : personnes utilisatrices, personnel médical et intermédiaires. Les données ont fait l'objet d'une analyse qualitative inductive, assistée du logiciel NVivo 11.
Trois dimensions émergent de nos résultats. (1) Le Canada se caractérise par une mosaïque de lois et de règlements locaux, fédéraux et provinciaux qui influencent de façon paradoxale les SRT. L'obligation de don altruiste, établie par la Loi sur la procréation assistée (LPA), joue un rôle prédominant sur le reproscape canadien. (2) Au niveau de l'expérience des SRT, la simplicité de certains SRT intégrés à la pratique clinique, comme l'importation de sperme ou d'ovocytes, contraste avec la complexité des voyages vers l'étranger auxquels les personnes utilisatrices se sentent souvent contraintes. (3) Interrogées sur leurs perspectives éthiques, quatre positions principales ressortent des entrevues: (a) le respect de leur autonomie reproductive, (b) les risques individuels et (c) sociaux des SRT, dont celui d'exploitation des gestatrices et des donneuses d'ovules, ainsi que (d) les incohérences de la LPA quant à sa capacité d'atténuer ces risques. En conclusion, le reproscape canadien se caractérise, entre autres, par une situation de " sous-traitance reproductive " : une reconnaissance institutionnelle des SRT, combinée à une délocalisation des risques moraux et médicaux hors des frontières nationales. Les conclusions de notre étude mettent en évidence le caractère inextricable du local et du global en PA et comment le reproscape mondial fonctionne par vases communicants. / Abstract : Cross-border reproductive care (CBRC) refers to the movement from one jurisdiction to another of persons or reproductive material as part of assisted reproductive technology (ART) treatment. This phenomenon has been observed in many countries, but the Canadian globalized ART system (or "reproscape") remains understudied empirically. This lack of data undermines the normative development in terms of ART. The aim of this dissertation is to describe and understand the Canadian reproscape in order to support ethical and legal reflection. To achieve this goal, we conducted a multi-site clinical ethnography combining (1) literature reviews, (2) participant and non-participant observation in two fertility clinics (Quebec and Ontario), a gamete importation and distribution agency and a dozen scientific congresses, (3) as well as semi-directed interviews with 45 actors of CBRC: users, medical professionals and intermediaries. The data were analyzed by inductive qualitative analysis assisted by NVivo 11 software.
Three dimensions emerge from our results. (1) Regarding the legal and clinical contexts of ART, Canada is characterized by a local mosaic of laws and regulations that paradoxically influence CBRC. The altruistic obligation established by the Assisted Human Reproduction Act (AHRA) plays a predominant role on the reproscape. (2) In terms of the experience of the main actors, the simplicity of CBRC integrated to the clinic, such as the import of semen or oocytes, contrasts with the complexity of journeys abroad for which users often feel constrained. (3) When asked about their ethical perspectives, the actors mentioned four main positions: (a) the respect for their reproductive autonomy, (b) the individual and (c) social risks of CBRC, including the exploitation of egg donors as well as gestational surrogates, and (d) AHRA inconsistencies in its ability to mitigate these risks.
Our conclusion is that the Canadian reproscape is characterized, inter alia, by a situation of "reproductive outsourcing." This concept is characterized by an institutional recognition of CBRC combined with a relocation of moral and medical risks outside national borders. The results of our study underline the inextricable local and global nature of ART and how CBRC works as communicating vessels.
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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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Chosen Children? : An empirical study and a philosophical analysis of moral aspects of pre-implantation genetic diagnosis and germ-line gene therapyZeiler, Kristin January 2005 (has links)
With pre-implantation genetic diagnosis (PGD), genetic testing and selective transfer of embryos is possible. In the future, germ-line gene therapy (GLGT) applied to embryos before implantation, in order to introduce missing genes or replace mutant ones, may be possible. The objective of this dissertation is to analyse moral aspects of these technologies, as described by eighteen British, Italian and Swedish gynaecologists and geneticists. The objective is systematised into three parts: research interviews and qualitative analysis, philosophical analysis, and elaboration of a framework that supports the combination of analytic methods. PGD was described as positive since it enabled some couples at risk for a genetic disease to have a child without the disease. PGD was described as in different senses ‘better’ than methods for prenatal diagnosis and selective termination of pregnancy. It was also described as positive since it provided couples at risk with one more option, even if it did not result in the birth of a healthy child. However, interviewees were concerned about the difficulty of defining and evaluating genetic disease. They were also concerned about patients’ choices, and about exaggerated use or misuse. Whereas PGD gave rise to ambivalence in terms of how to understand, describe and evaluate it, GLGT was often described as unrealistic or undesirable. The results of the qualitative analysis are used in a philosophical analysis of the concepts of choice, autonomous choice, ambivalence, trust and ambivalence in trust relations. A set of distinct characteristics of each concept are elaborated. The results of the philosophical analysis are used in the discussion of the results of the qualitative analysis. The study shows that the technologies imply both ‘new’ ways to perform ‘old’ medical practices and ‘new’ practices. Old moral questions are reformulated. New moral questions are added. Against the background of this, the concept of genetic identity is discussed. Key words: empirical ethics, pre-implantation genetic diagnosis, germ-line gene therapy, qualitative research, philosophical analysis, medical progress, genetic disease, choice, autonomous choice, ambivalence, trust, genetic identity.
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Perceptions de néphrologues transplanteurs et référents face à la quantification du risque immunologique global en transplantation rénaleDion-Labrie, Marianne 01 1900 (has links)
Problématique : La pénurie d’organes qui sévit actuellement en transplantation rénale incite les chercheurs et les équipes de transplantation à trouver de nouveaux moyens afin d’en améliorer l’efficacité. Le Groupe de recherche transdisciplinaire sur les prédicteurs du risque immunologique du FRSQ travaille actuellement à mettre en place de nouveaux outils facilitant la quantification du risque immunologique global (RIG) de rejet de chaque receveur en attente d’une transplantation rénale. Le calcul du RIG s’effectuerait en fonction de facteurs scientifiques et quantifiables, soit le biologique, l’immunologique, le clinique et le psychosocial. La détermination précise du RIG pourrait faciliter la personnalisation du traitement immunosuppresseur, mais risquerait aussi d’entraîner des changements à l’actuelle méthode de sélection des patients en vue d’une transplantation. Cette sélection se baserait alors sur des critères quantifiables et scientifiques. L’utilisation de cette méthode de sélection possède plusieurs avantages, dont celui d’améliorer l’efficacité de la transplantation et de personnaliser la thérapie immunosuppressive. Malgré tout, cette approche soulève plusieurs questionnements éthiques à explorer chez les différents intervenants œuvrant en transplantation rénale quant à sa bonne utilisation.
Buts de l’étude : Cette recherche vise à étudier les perceptions de néphrologues transplanteurs et référents de la province de Québec face à l’utilisation d’une méthode de sélection des patients basée sur des critères scientifiques et quantifiables issus de la médecine personnalisée. Les résultats pourront contribuer à déterminer la bonne utilisation de cette méthode et à étudier le lien de plus en plus fort entre science et médecine.
Méthodes : Des entretiens semi-dirigés combinant l’emploi de courtes vignettes cliniques ont été effectués auprès de 22 néphrologues québécois (transplanteurs et référents) entre juin 2007 à juillet 2008. Le contenu des entretiens fut analysé qualitativement selon la méthode d’analyse de Miles et Huberman.
Résultats : Les résultats démontrent une acceptation généralisée de cette approche. La connaissance du RIG pour chaque patient peut améliorer le traitement et la prise en charge post-greffe. Son efficacité serait supérieure à la méthode actuelle. Par contre, la possible exclusion de patients pose un important problème éthique. Cette nouvelle approche doit toutefois être validée scientifiquement et accorder une place au jugement clinique.
Conclusions : La médecine personnalisée en transplantation devrait viser le meilleur intérêt du patient. Malgré l’utilisation de données scientifiques et quantifiables dans le calcul du RIG, le jugement clinique doit demeurer en place afin d’aider le médecin à prendre une décision fondée sur les données médicales, son expertise et sa connaissance du patient. Une réflexion éthique approfondie s’avère nécessaire quant à l’exclusion possible de patients et à la résolution de la tension entre l’équité et l’efficacité en transplantation rénale. / Background: The overwhelming scarcity of organs within renal transplantation forces researchers and transplantation teams to seek new ways to increase efficacy. The Groupe de recherche transdisciplinaire sur les prédicteurs du risque immunologique is attempting to put in place a scientifically precise method for determining the global immunological risk (GIR) of rejection for each patient waiting for a renal transplant. The quantification of the GIR is based on scientific factors, such as biological, immunological, clinical and psychosocial. The precise and global determination of the GIR could change the way patients are selected for renal transplantation. This selection will be based thus on scientific and quantifiable criteria. The advantages of the use of this method for selecting potential allograft recipients could be improvement in the efficacy of the process and the individualization of immunosuppressive therapy. In spite of these numerous advantages, this approach raises several ethical questions to explore with nephrologists working in kidney transplantation.
Aims of the study: The aims of this study is to explore the views of transplant and referring nephrologists on the use of personalized medicine tools to develop a new method for selection potential recipients of a renal allograft. The results of this research could contribute to determine the acceptable use of this method in renal transplantation and to study the link between science and medicine.
Methods: Twenty-two semi-directed interviews, using short clinical vignettes, were conducted with nephrologists in the province of Quebec between June 2007 and July 2008. The semi-directed interviews were analyzed qualitatively using the content and thematic analysis method described by Miles and Huberman.
Results: The results demonstrate a general acceptance of this approach amongst the participants. Knowledge of each patient’s immunological risk could improve treatment and the post-graft follow-up. On the other hand, the possibility that patients might be excluded from transplantation poses a significant ethical issue. It could be more effective than the method presently used. The method must be validated scientifically, and must leave a role for clinical judgment.
Conclusions: The use of personalized medicine within transplantation must be in the best interests of the patient. However, in spite of the use of such scientific data, a place must be retained for the clinical judgment that allows a physician to make decisions based on medical data, professional expertise and knowledge of the patient. An ethical reflection is necessary in order to focus on the possibility of patients being excluded, as well as on the resolution of the equity/efficacy dilemma.
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Perceptions de néphrologues transplanteurs et référents face à la quantification du risque immunologique global en transplantation rénaleDion-Labrie, Marianne 01 1900 (has links)
Problématique : La pénurie d’organes qui sévit actuellement en transplantation rénale incite les chercheurs et les équipes de transplantation à trouver de nouveaux moyens afin d’en améliorer l’efficacité. Le Groupe de recherche transdisciplinaire sur les prédicteurs du risque immunologique du FRSQ travaille actuellement à mettre en place de nouveaux outils facilitant la quantification du risque immunologique global (RIG) de rejet de chaque receveur en attente d’une transplantation rénale. Le calcul du RIG s’effectuerait en fonction de facteurs scientifiques et quantifiables, soit le biologique, l’immunologique, le clinique et le psychosocial. La détermination précise du RIG pourrait faciliter la personnalisation du traitement immunosuppresseur, mais risquerait aussi d’entraîner des changements à l’actuelle méthode de sélection des patients en vue d’une transplantation. Cette sélection se baserait alors sur des critères quantifiables et scientifiques. L’utilisation de cette méthode de sélection possède plusieurs avantages, dont celui d’améliorer l’efficacité de la transplantation et de personnaliser la thérapie immunosuppressive. Malgré tout, cette approche soulève plusieurs questionnements éthiques à explorer chez les différents intervenants œuvrant en transplantation rénale quant à sa bonne utilisation.
Buts de l’étude : Cette recherche vise à étudier les perceptions de néphrologues transplanteurs et référents de la province de Québec face à l’utilisation d’une méthode de sélection des patients basée sur des critères scientifiques et quantifiables issus de la médecine personnalisée. Les résultats pourront contribuer à déterminer la bonne utilisation de cette méthode et à étudier le lien de plus en plus fort entre science et médecine.
Méthodes : Des entretiens semi-dirigés combinant l’emploi de courtes vignettes cliniques ont été effectués auprès de 22 néphrologues québécois (transplanteurs et référents) entre juin 2007 à juillet 2008. Le contenu des entretiens fut analysé qualitativement selon la méthode d’analyse de Miles et Huberman.
Résultats : Les résultats démontrent une acceptation généralisée de cette approche. La connaissance du RIG pour chaque patient peut améliorer le traitement et la prise en charge post-greffe. Son efficacité serait supérieure à la méthode actuelle. Par contre, la possible exclusion de patients pose un important problème éthique. Cette nouvelle approche doit toutefois être validée scientifiquement et accorder une place au jugement clinique.
Conclusions : La médecine personnalisée en transplantation devrait viser le meilleur intérêt du patient. Malgré l’utilisation de données scientifiques et quantifiables dans le calcul du RIG, le jugement clinique doit demeurer en place afin d’aider le médecin à prendre une décision fondée sur les données médicales, son expertise et sa connaissance du patient. Une réflexion éthique approfondie s’avère nécessaire quant à l’exclusion possible de patients et à la résolution de la tension entre l’équité et l’efficacité en transplantation rénale. / Background: The overwhelming scarcity of organs within renal transplantation forces researchers and transplantation teams to seek new ways to increase efficacy. The Groupe de recherche transdisciplinaire sur les prédicteurs du risque immunologique is attempting to put in place a scientifically precise method for determining the global immunological risk (GIR) of rejection for each patient waiting for a renal transplant. The quantification of the GIR is based on scientific factors, such as biological, immunological, clinical and psychosocial. The precise and global determination of the GIR could change the way patients are selected for renal transplantation. This selection will be based thus on scientific and quantifiable criteria. The advantages of the use of this method for selecting potential allograft recipients could be improvement in the efficacy of the process and the individualization of immunosuppressive therapy. In spite of these numerous advantages, this approach raises several ethical questions to explore with nephrologists working in kidney transplantation.
Aims of the study: The aims of this study is to explore the views of transplant and referring nephrologists on the use of personalized medicine tools to develop a new method for selection potential recipients of a renal allograft. The results of this research could contribute to determine the acceptable use of this method in renal transplantation and to study the link between science and medicine.
Methods: Twenty-two semi-directed interviews, using short clinical vignettes, were conducted with nephrologists in the province of Quebec between June 2007 and July 2008. The semi-directed interviews were analyzed qualitatively using the content and thematic analysis method described by Miles and Huberman.
Results: The results demonstrate a general acceptance of this approach amongst the participants. Knowledge of each patient’s immunological risk could improve treatment and the post-graft follow-up. On the other hand, the possibility that patients might be excluded from transplantation poses a significant ethical issue. It could be more effective than the method presently used. The method must be validated scientifically, and must leave a role for clinical judgment.
Conclusions: The use of personalized medicine within transplantation must be in the best interests of the patient. However, in spite of the use of such scientific data, a place must be retained for the clinical judgment that allows a physician to make decisions based on medical data, professional expertise and knowledge of the patient. An ethical reflection is necessary in order to focus on the possibility of patients being excluded, as well as on the resolution of the equity/efficacy dilemma.
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