Dissertations / Theses on the topic 'Neuroethics'

La problématique de mes recherches porte sur le langage – plus particulièrement, la communication humaine dans la perspective interdisciplinaire. Ainsi mes recherches puisent dans la philosophie (la philosophie du langage, l’éthique), la sociologie (Goffman, Mead), la psychologie (Piaget, Kohlberg, Watzlawick), la sociolinguistique, la linguistique (Jakobson, Buhler), la communication (Craig, McQuail) la neuroéthique (Patricia Churchland, Martha J. Farah). Cette « mosaïque » disciplinaire a pour objectif d’étudier la complexité de la communication interpersonnelle sous plusieurs points de vue afin de bien déterminer ses éléments « techniquement » constitutifs. Ceci permettra d’établir un groupe des facteurs qui jouent un rôle important dans la constitution de l’éthique de la communication<br>The problematic of my research concerns language - in particular, human communication in the interdisciplinary perspective. My research is based on philosophy (philosophy of language, ethics), sociology (Goffman, Mead), psychology (Piaget, Kohlberg, Watzlawick), sociolinguistics, linguistics (Jakobson, Buhler) Craig, McQuail) neuroethics (Patricia Churchland, Martha J. Farah). This disciplinary "mosaic" aims to study the complexity of interpersonal communication from several points of view in order to determine its "technically" constitutive elements. This will help establish a group of factors that play an important role in shaping the ethics of communication

Dans son analyse de la démarche de socialisation des enfants, Émile Durkheim met en garde contre « toute action positive destinée à imprimer une orientation déterminée à l’esprit de la jeunesse ». Notre thèse explore les déclinaisons contemporaines de ces « actions positives » qui émanent de l’État et de différents éléments de la société, et qui, en modifiant le fonctionnement cérébral, entendent orienter le comportement d’enfants non malades vers davantage d’attention et moins d’impulsivité. Cette orientation recouvre un enjeu politique : la réduction des inégalités dans les capacités cérébrales, qui tendent à devenir des inégalités majeures dans la société de performance contemporaine. Notre objet de recherche est constitué par les nouveaux pouvoirs exercés par les adultes sur les enfants, au moyen de techniques biomédicales nouvelles, en particulier par des substances chimiques : les médicaments psychostimulants. Les moyens biomédicaux s’exercent directement sur le fonctionnement cérébral, de manière intrusive, sans la médiation du langage et de la communication, et posent de ce fait des nouvelles questions liées à leur puissance d’action. Ce travail se donne pour objectif de contribuer à une théorie de la justice cognitive pour les enfants. Les nouvelles significations des inégalités d’attention dans les apprentissages, les enjeux sociaux de ces inégalités dans une société de performance et les nouvelles possibilités d’intervention biomédicales sur le fonctionnement cérébral des enfants convergent vers de nouvelles formes dans l’économie psychique des enfants. Il semble possible d’interpréter ces nouvelles forces à l’œuvre comme s’inspirant d’un principe de justice. Le débat autour d’une justice cognitive reflète alors le caractère ressenti comme insupportable socialement des inégalités d’attention et le caractère ressenti comme inévitable de la réponse pharmacologique qui lui est associée. Le recours à la théorie d’une justice cognitive implique, pour l’analyse des pratiques de prescription massives de Ritaline, de se situer au-delà du paradigme habituel de contrôle social et de contrôle des comportements par la médicalisation de la société<br>The analysis of children’s socialization process made by Emile Durkheim warns us against any actions intended to have an impact on the orientation of the young spirits. Our thesis explores the contemporary range of these positive actions issued from the state as well as from different parts of society. Those ones, by modifying the proper cerebral functioning, are guiding the behaviour of non-ill toward more attention and less impulsivness. This subject has a significant political concern: the reduction of cerebral inequal capacities which tend to become more and more important in our contemporary performance oriented society. Our research investigates new powers exerciced by adults on children, through the use of modern biomedical techniques, and particuly through psychostimulant pharmaceuticals. Biomedical tools directly reach the functioning brain, in an intrusive way, without the intermediate of either language or communication, which therefore arises new questions about their power of action. The aim of this study is to contribute to a theory of a cognitive justice for children. The new meanings of the inequalities of focus in learning, the social issues of these inequalities in a performance society and the new possibilities of biomedical intervention on the functioning brain converge towards new forms in psychic economy of children. It seems possible to interpret those new forces in action through a principle of justice. The debate around a cognitive justice reflects the unbearable social aspect of the disparities in attention capacity and the hypothetically unavoidable pharmacological answers associated to it. The solution of the theory of cognitive justice involves, for the pratical analysis of the massive instruction of Ritaline, to be situated beyond the usual paradigm of social control and behavioural control through society’s medicalization

O presente trabalho analisou como os estudantes universitários avaliam o uso de psicofármacos por pessoas que pretendem melhorar o rendimento cognitivo sem apresentar prejuízo nessa habilidade mental. Esse tipo de remédio só pode ser comercializado através de receita médica especial. Dessa forma, o uso não-médico desse tipo de droga, chamado também de aprimoramento neurocognitivo farmacológico, é ilegal. Com o crescimento no número de estudantes universitários americanos e canadenses que utilizam estimulantes para melhorar a performance acadêmica, o tema tornou-se uma preocupação para a Saúde Pública nos respectivos países. O aprimoramento neurocognitivo farmacológico vem sendo muito discutido no campo da Neuroética. Nos debates dessa a prática são avaliados os riscos e benefícios que essa prática pode trazer para o indivíduo e à sociedade. No Brasil, esse assunto é pouco discutido. Assim, a investigação sobre a compreensão e avaliação que estudantes universitários fazem sobre esse tema trouxe informações que podem ampliar o conhecimento sobre tema no Brasil. A investigação foi realizada através de três grupos focais com estudantes universitários. Os resultados indicaram que questões como pressão social (exigência de bons resultados), segurança do medicamento, risco de coerção social, possibilidade de essa prática aumentar a injustiça social foram as principais preocupações da população entrevistada. Alguns aspectos foram compreendidos de maneira bastantes polarizada. Não está claro para os participantes dos grupos focais, por exemplo, se esta é ou não uma prática desonesta e se a melhora no rendimento cognitivo pode ser entendida como sendo legítima da pessoa. Esses e outros dados mostram que a compreensão do tema aprimoramento neurocognitivo farmacológico é muito influenciada por dois aspectos. O primeiro aspecto se refere ao entendimento prévio que a pessoa tem sobre a relação entre cérebro e comportamento e sobre a relação entre indivíduo e grupo social. O segundo aspecto é a influência que os textos que informam sobre ciência exercem sobre os leitores. Nesse sentido, a aplicação dos grupos focais mostrou-se um importante meio para conhecer o entendimento dos estudantes universitários sobre o aprimoramento neurocognitivo farmacológico e, dessa forma, contribuir para a discussão desse tema no Brasil.

Née dans les années 2000 pour répondre à une inquiétude éthique grandissante provoquée par les avancées neuroscientifiques, la neuroéthique s’entend comme une réflexion éthique spécifique aux neurosciences. Saisie par le droit depuis la loi de bioéthique du 7 juillet 2011, elle a intégré la sphère juridique sous la forme d 'un régime spécial : le droit des neurotechnologies. Parce que celui-ci relève indéniablement du droit de la bioéthique, la prise en compte du risque sanitaire générée par ces technologies a été une évidence. A l’examen pourtant, la justification de la création de règles spécifiques pour les techniques neuroscientifiques réside d’abord et avant tout dans la présence d’un risque d’une autre nature : le risque comportemental. Curieusement, celui-ci n’a été que peu pris en considération dans ses différents aspects par le législateur. Partant de ce constat, l'objet de cette thèse est d’apporter une contribution à l’élaboration de ce régime spécial, en tentant d’intégrer davantage les enjeux du risque comportemental dans le corps des règles juridiques, sans que l’attention portée au risque sanitaire en souffre par la même occasion. En ce sens, les mesures sont proposées pour chaque famille de neurotechnologies. Concernant les techniques d’imagerie cérébrale, il s’agit de restreindre les finalités autorisées et de corriger les modalités du consentement. Concernant les techniques de neuromodulation, il s’agir de limiter les finalités d’utilisation et de réaménager les règles de la responsabilité<br>Born in the 2000s with the aim of addressing a growing ethical concern over the neuroscientist advances, neuroethics shall be understood as an ethical reflection related to neurosciences. Seized by law since the law on bioethics dated July, 7th 2011, it was embedded in the legal sphere by means of a special regime, namely neurotechnology law. Since the latter undeniably fails within bioethics law, the health risk arising from these technologies was self-evidently considered. After scrutiny though, the rationale behind creating rules peculiar to neuroscientist technologies mainly lies in the presence of a different risk : the behavioural risk. Surprisingly, such risk was given cursory consideration only in its various aspects by the legislature. Based on this observation, the purpose of this thesis is to make a contribution to the development of the aforementioned special regime, by seeking to integrate further the behavioural risk issues without detriment to the consideration already given to the health risk. Towards that end, measures are proposed for each family of neurotechnologics. As regards cerebral imaging technologies, this includes restricting their permissible purposes as well as correcting the conditions for prior consent. With respect, to neuromodulation technologies, it is a question, of limiting their purpose for use and to overhaul the liability rules

The development of predictive biomarkers in neuroscience is increasingly enabling bioprediction of adverse behavioural events, from psychosis to impulsive violent reaction. Because many brain-based disorders can be thought of as end-states of a long development, bioprediction carries immense therapeutic potential. In this thesis, I analyse issues raised by the development of bioprediction of brain-based disorder. I argue that ethical analysis of probabilities and risk information bioprediction provides is confounded by philosophical and social structures that have, until recently, functioned nominally well by assuming categorical (binary) concepts of disorder, especially regarding brain-disorder. Through an analysis of the philosophical concept of disorder, I argue that we can and ought to reorient disorder around probability of future harm and stratify disorder based on the magnitude of risk. Rejection of binary concepts in favour of this non-binary (probability-based) one enables synergy with bioprediction and circumnavigation of ethical concerns raised about proposed disorders of risk in psychiatry and neurology; I specifically consider psychosis and dementia risk. I then show how probabilistic thinking enables consideration of the implications of bioprediction for two areas salient in mental health: moral responsibility and justice. Using the example of epilepsy and driving as a model of obligations to protect others against risk of harm, I discuss how the development of bioprediction is poised to enhance moral responsibility. I then engage with legal cases and science surrounding a predictive biomarker of impulsive violent reaction to propose that bioprediction can sometimes rightly diminish responsibility. Finally, I show the relevance of bioprediction to theories of distributive justice that assign priority to the worse off. Because bioprediction enables the identification of those who are worse off in a way of which we have previously been ignorant, a commitment to assign priority to the worse off requires development of and equal access to biopredictive technologies.

Infants with hypoxic-ischaemic encephalopathy (birth asphyxia) have a high risk of death or disability. Those with poor prognosis are sometimes allowed to die after withdrawal of intensive care. In recent years, doctors have used new types of brain scan, magnetic resonance imaging (MRI), to predict the type and severity of impairment if the infant survives and to help with such decisions. In this thesis, I analyse the issues arising from the use of MRI for prognostication and decision-making in newborn infants. I argue that previous prognostic research has been hampered by a failure to identify and focus on the most important practical question and that this contributes to uncertainty in practice. I outline recommendations for improving research. I then look at existing guidelines about withdrawal of life-sustaining treatment. I identify several problems with these guidelines; they are vague and fail to provide practical guidance, they provide little or no genuine scope for parental involvement in decisions, and they give no weight to the interests of others. I argue that parental interests should be given some weight in decisions for newborn infants. I develop a new model of decision-making that, using the concept of a Restricted Life, attempts to set out clearly the boundaries of parental discretion in decision-making. I argue that where infants are predicted to have severe cognitive or very severe physical impairment parents should be permitted to request either withdrawal or continuation of treatment. I justify this model on the basis of overlapping interests, (prognostic, experiential and moral) uncertainty, asymmetrical harms, and the burden of care. In the conclusion, I set out a guideline for the use of MRI in newborn infants with hypoxic-ischaemic encephalopathy. I suggest that this guideline would provide a more robust, coherent and practical basis for decision-making in newborn intensive care.

Darbo tikslas - išanalizuoti, kaip Lietuvos studentai vertina smegenų veiklą stimuliuojančių medžiagų vartojimą. Susipažinta su neuroetinėmis smegenų veiklą stimuliuojančių medžiagų/preparatų (SVSP) vartojimo problemomis pasaulyje ir Lietuvoje, palygintos SVSP vartojimo bei vertinimo tendencijos Lietuvoje ir užsienio šalyse. Atlikta sociologinė apklausa, kurioje dalyvavo 531 studentas. Respondentams pateikta 44 klausimų anketa. Apklausti 7 universitetinių ir 3 neuniversitetinių aukštųjų mokyklų studentai. Rezultatai apdoroti SPSS programa. Nustatyta, jog SVSP yra aktuali tema Lietuvos studentams. 40,9 proc. respondentų vartoja arba yra vartoję SVSP. SVSP vartojimo problematika Lietuvoje ir pasaulyje skiriasi. Vakarų šalyse opiausios problemos: piktnaudžiavimas smegenų veiklą stimuliuojančiais vaistais, nekorektiška reklama, socialinė nelygybė tarp vartojančiųjų ir nevartojančiųjų SVSP. Lietuvoje nesilaikoma ženklinimo ir reklamos reikalavimų. Dauguma apklausos respondentų SVSP vartojime neįžvelgia socialinių, teisinių ar etinių problemų, tačiau tai gali sąlygoti išsamios ir teisingos informacijos trūkumas, nes 80,4 proc. respondentų apie juos sužinojo iš reklamos. Tikėtina, kad greitėjant gyvenimo tempui, smegenų veiklą stimuliuojančių preparatų vartojimas Lietuvoje didės, o vartotojams trūkstant išsamios ir korektiškos informacijos apie šiuos preparatus, teisinės, etinės ir socialinės problemos gali paaštrėti.<br>The aim of this research was to perfom an analysis on Lithuanian students evaluation of brain activity enhancing substances usage. Neuroethical problems araising while using brain activity enhancers were reviewed as well as tendencies of usage and evaluation were compared in Lithuania and other countries. Sociological survey has been performed in 7 universities and 3 non-university higher education institutions. 531 student filled-in a questionaire which contained 44 questions. Data has been analyzed using SPSS program. The usage of brain activity enhancing substances is a relevant topic for Lithuanian students. Brain enhancers are or have been used by 40,9 percent respondents. Although problems regarding brain activity enhancers usage are different in Lithuania and Western countries. Relevant problems in economical developed countries are misuse of brain enhancers, incorrect advertisement, social inequality. In Lithuania labelling and advertising requirement often are not followed. Majority of respondents do not think that using brain activity enhancers can cause any social, ethical or legal problems. Although such oppinion can be influenced by lack of comprehensive information. Information about brain activity enhancers was recieved through commercial means by 80,4 percent respondents. It can be predicted that usage of brain activity enhancers will grow together with rapid life-style. And since there is lack of comprehensive information regarding brain activity enhancers... [to full text]

碩士<br>國立陽明大學<br>心智哲學研究所<br>103<br>There are various kinds of psychotherapy used to improve human’s well-being. However, they seem not sufficient when considering that the population of mentally disordered patients is approximately 450 million worldwide. What is the needed step which psychiatry should take? Psychodrama, one of the most popular methods of psychotherapy, appears to be effective to enable patients to face their issues and overcome their problems. But, are mentally disordered patients treated as persons during the psychodrama? Mentally disordered patients seem to be misunderstood by therapists and their personhood is oppressed during the treatment. Thus, this thesis aims to reveal the complexity of human’s mental health conditions by discussing the philosophical mind-brain problem. In addition, the thesis applies the perspective of philosophical neuroethics to challenge contemporary psychiatry, which uses methods such as psychodrama that threaten patients’ personhood. The challenges embrace the definition of mental disorder, the implement of diagnosing and the methodology of treating patients. In the concluding section of the thesis, new approaches are propsed as solutions to difficulties of the contemporary psychiatry, namely the first-person neuroscience, and person-centered psychodrama, based on the person-centered theory.

博士<br>國立中央大學<br>哲學研究所<br>102<br>As an agent has moral responsibility for his actions, personal identity is an important basis to determine the attribution of moral responsibility. Traditionally, personal identity is mainly determined based on an individual's memory or psychological connection. However, neuroscience and technology have developed to a stage that could change a person's memory, and it generates a problem that whether one has to bear the moral responsibility for actions before one’s memory was changed. Parfit criticized the two main reductionist criteria of personal identity of the Western philosophical tradition, namely the psychological and physical criterion. He regards them unable to respond to the challenge of neuroscience especially the one to many relationship made possible by recent scientific technology. Parfit thinks that what is important in attribution of moral responsibility is what he called "relation R", that is, whether there are enough psychological continuity between the earlier and the later agents The more the greater moral responsibility. Relation R does not focus on the continuity of a person. Parfit could be said to nullify the traditional concept of personal identity. However, relation R still relies on individual’s memory or psychological connection to determent whether relation R is established, it would not be able to determine the attribution of moral responsibility. Korsgaard points out that even if in the brain fission case, the unity of agency still can provide identification to whom the responsibility of the action should be attributed. However, both conceptions are limited to traditional Western philosophy which presupposes responsibility is tied purely to the individual’s internal psychological connection. This paper adapts Leibniz’ proposal of “the concurring testimony of other people" for the identification of a person and develops an ethical relation E in response to the problem of personal identity. I borrow the Confucian idea of intimate family relationship in reconstruction since for Confucian a person’s identity is closely shared with one’s family members with whom one grows up since born. The most important one is the relationship between family members and friends, and in Chinese tradition, it is called ethical relation, as it conveys something permanent in our personal identity. Hence, besides memory, ethical relation E could provide a way for the identification of a person through his or her intimate relations with others and could avoid the interference of neurotechnologies. In fact, relation E provides longitudinal and co-temporal social elements and thus a criterion with both subjective and objective aspects for the true identity of a person. Finally, I apply this criterion to solve some of the thorny questions of attribution of moral responsibilities of related neuroethical and bioethical issues to show its theoretical effectiveness.

An increasingly blurred understanding of the moral significance of accurate and authentic memory reconsolidation for an adequate apprehension of self, other, and community suggests a critical need to explore the inter-relationships shared between autobiographical memory, emotional rationality, and narrative identity in light of the contemporary possibilities of neurocognitive memory manipulation, particularly as it bears on ethical decision making. Grounding its thesis in four evidential effects – namely, (i) neurocognitive memory manipulation disintegrates autobiographical memory, (ii) the disintegration of autobiographical memory degenerates emotional rationality, (iii) the degeneration of emotional rationality decays narrative identity, and (iv) the decay of narrative identity disables one to seek, identify, and act on the good – the dissertation argues that neurocognitive memory manipulation cannot be justified as a morally licit biomedical practice insofar as it disables one to seek, identify, and act on the good.<br>McAnulty College and Graduate School of Liberal Arts;<br>Health Care Ethics<br>PhD;<br>Dissertation;

Contemporary investigators have long striven to better understand and interact with the brain and its quintessential role in the formation of an individual’s personality, self, consciousness, etc. In this quest, different approaches to examining the nervous system, whether at the level of neurotransmitters, genetics, neurons, neuropathways, behaviors, subjective experiences, or social influences, have been pursued. Some findings provided from this research have then aided in the medical amelioration of various neurologic and psychiatric disorders. Nonetheless, each treatment developed has come with a particular risk profile; the rule of thumb being those with higher risk are generally the more invasive methods, such as neurosurgical interventions. First line therapies therefore typically prioritize non-invasive modalities; however, in recent decades the use of more invasive brain stimulation therapies, involving deep brain stimulation (DBS) devices, have increased to better address severe treatment resistant neurological disorders, such as Parkinson’s Disease, Epilepsy, Essential Tremor, and Dystonia. To better tailor DBS to also treat severe psychiatric disorders, these devices have shifted away from merely stimulating neural tissue at an automated rate and instead to utilizing the patient’s own neurological states to trigger stimulation. However, these “closed-loop” stimulation devices, utilizing neuromonitoring and computational systems not seen in the original “open-loop” design, complicate an already ethically intricate treatment with possibly new and unknown risks. This is in part because of their transition from a standardized intervention to a personalized one, much like neuro-oncological therapies for brain tumors. In order to better assess and address the resulting neuroethical dilemmas with regard to closed-loop DBS (cDBS) devices, this thesis examines both the practical and ethical challenges this novel technology faces in research, regulatory, and clinical settings. Firstly, there are ethical challenges of classifying cDBS as an innovative treatment versus a research-driven intervention during its application in psychiatric surgery. Dissolving this distinction demonstrates the ethical balancing act required for such a non-validated intervention for psychiatric disorders with the risk profile of course being elevated due to the invasive nature of DBS. Secondly, the evaluative criteria for medical devices, including neurostimulatory systems both in the Australian federal jurisdiction and globally, have been identified as being biased towards requiring quantitative criteria in the assessment of a treatment’s safety and efficacy. This focus subsequently deprioritizes alternative measurement modalities, like qualitative assessments, that may provide alternative insights into the efficacy and risks of cDBS interventions. Lastly, the gradual improvements of DBS’s risk profile and concurrent growth in efficacy for neurological disorders arguably foreshadows a future in which they may be utilized earlier in a disease’s treatment timeline. Since the contemporary heuristic is to consider neurosurgical interventions as a ‘last resort’ treatment, a revision has been proposed so as to ensure DBS is accurately characterized. In particular, this adjustment of the ‘last resort’ phrasing may also break down as psychiatric surgeries with cDBS become indicated at earlier disease stages as their clinical efficacy for disorders like Obsessive-Compulsive Disorder improve. In sum, these investigations have helped to spur insights into some alternative paths of inquiry, notably in addressing the tensions between the epistemological and ethical standards needed to produce generalizable knowledge of neurostimulatory treatments in patients with rare diseases. The examination of the actual data sets obtained by DBS clinical researchers, especially those sets of data that are not submitted for formal regulatory review, presents an additional tension in holistically assessing these treatments. It is hoped that by examining these topics, this thesis will better support the next generation of patients treated with cDBS interventions, while also assisting in the ongoing challenge of the mind to better understand the technology it interacts with.

The key problem this thesis addresses is: What is the impact of neural implants, such as Deep Brain Stimulation or a Cochlear ear implant, on a person’s personal identity? Put explicitly: What role do neural implants play in changes in self-understanding, agency and autonomy and what is the significance of these changes for philosophical and practical conceptions of personal identity? I explore the problem of the impacts of neural implants on personal identity through reference to first-personal accounts wherein patients or their family and significant others, express the claim that following the implantation they are no longer themselves or no longer the same person. I apply contemporary approaches to identity, agency and autonomy in moral psychology to argue that the sense of identity at issue in these claims is practical identity, and not metaphysical identity, and that the first-personal accounts reveal aspects of selfhood, raising concerns related to narrative agency and autonomy.

Alzheimer’s disease is the leading cause of dementia worldwide, affecting more than 30 million people. FDA-approved drugs only provide temporary relief to memory problems, and no disease-modifying therapies are currently available. As such, different therapeutic modalities are being investigated to address the biological and/or cognitive manifestations of the disease. A number of these therapies are highly invasive and require stereotactic surgery, potentially posing a greater risk of harms to a vulnerable population with cognitive deficits that limit their ability to provide fully informed consent. Using an interdisciplinary and pragmatic approach to bioethical inquiry, this dissertation examines studies on deep brain stimulation in people with Alzheimer’s disease, reviewing clinical trials and relevant animal studies to highlight pressing ethical concerns that ongoing and forthcoming trials need to address. By having three major publications during the course of the PhD as the main chapters, This thesis aims to enumerate ethical issues that encompass the genetic, neurobiological, cognitive, individual, and societal dimensions of deep brain stimulation for Alzheimer’s disease. These ethical considerations can then be extended into other forms of novel neurosurgical trials such as cell implantation and gene therapy. Finally, this thesis incorporates other publications during the PhD to illustrate further conundrums on the use of deep brain stimulation and highlight directions for future bioethics research on the use of invasive neurotechnologies for dementia in terms of the importance of genetic underpinnings, clinical translation issues, communication of research objectives, media portrayal, and implications on criminal responsibility.

This cumulative dissertation consists of investigations the brain processes related to legal and moral decision-making as well as a philosophical reflection. The behavioral main finding is that lawyers perceive themselves to be less emotionally involved during legal and moral decision-making than other academics. Regarding brain processes, the major finding is that legal decisions are correlated with stronger activation in the left dorsolateral prefrontal cortex, suggesting a stronger engagement of rule application. The philosophical part reflects the normative implications of these investigations and comprises a wider discussion of neuroimaging in the context of clinical research.

La paralysie cérébrale représente la plus fréquente cause de handicap physique chez l’enfant. Plus de 50 000 canadiens en sont atteints. Rien ne peut aujourd’hui guérir la paralysie cérébrale; il n’en demeure pas moins que les comorbidités associées, de même que les différents traitements, entraînent des besoins importants pour ces patients en matière de services de santé. Alors que les décisions associées à ces soins de santé sont susceptibles de soulever d’importantes questions éthiques telles que le respect de l’autonomie et l’accès équitable aux soins de santé, peu d’études se sont penchées sur cette question. Ce mémoire de maîtrise présente d’abord un bref portrait des caractéristiques et des principaux aspects médicaux de la paralysie cérébrale. Il est suivi de la description des méthodes de recherche utilisées, notamment le questionnaire et l’entrevue semi-dirigée. Vient ensuite la recension des écrits, où sont abordés des thèmes comme la confidentialité et la transition du système de santé pédiatrique vers le système de santé pour adultes. Une étude qualitative a été réalisée auprès de jeunes adultes atteints de paralysie cérébrale et les résultats, présentés dans ce mémoire, comprennent notamment les perspectives des participants sur les attitudes des professionnels de la santé envers eux et les sentiments d’injustice et d’inégalité parfois ressentis lors de l’utilisation des soins de santé. Finalement, une discussion générale est proposée, où il est question entre autres de la justice, du respect de la personne et de l’autonomie et des conclusions à tirer.<br>Cerebral palsy is the most frequent cause of physical disability in children. More than 50,000 Canadians are currently affected by cerebral palsy, and for the moment, no cure exists. Even so, the available therapies along with the associated comorbidities of cerebral palsy create significant needs for these patients in terms of health services. Given the high demand for health services, decisions related to care are likely to raise important ethical issues such as respect for patient autonomy and equitable access to healthcare. To date very few studies have explored the scope of ethical issues experienced by this patient population. This master’s thesis presents a brief overview of the characteristics and main medical aspects of cerebral palsy. It is followed by the description of the research methods used; including a questionnaire and semi-structured interview, and by the literature review, where issues found in the literature are presented, including confidentiality and transition from pediatric to adult healthcare system. A qualitative study has been conducted with young adults with cerebral palsy and the results, presented in this thesis, include the participants’ perspectives on attitudes of healthcare professionals towards them and feelings of injustice and inequality sometimes experienced when using healthcare services. Finally a general discussion is offered, focusing on issues such as justice, respect for the person and respect for autonomy, as well as some recommendations for improvement of healthcare experience.

Le coma, l’état végétatif et l’état de conscience minimale sont classés comme « troubles de la conscience ». La caractéristique commune à ces diagnostics est un état de conscience altéré. La technologie permet désormais de maintenir en vie les individus affligés de ces diagnostics. La nature même de leur condition et les soins disponibles pour ces patients conduisent à des dilemmes médicaux et éthiques importants. Ce mémoire propose une brève introduction des troubles de la conscience suivie d’une recension des écrits sur les enjeux éthiques et sociaux en lien avec ces diagnostics. Force est de constater que certains enjeux perdurent depuis des années comme le retrait de traitement. D’autres sont apparus plus récemment, comme l’enjeu lié à l’usage de la neuroimagerie. Un deuxième volet présente les résultats d’une étude qualitative examinant les perspectives et l’expérience des professionnels de la santé face aux enjeux éthiques lors de la prise en charge des patients atteints de troubles de la conscience. Cette étude a été réalisée par le biais d’un court questionnaire et d’entrevues semi-dirigées qui furent enregistrées puis analysées à l’aide du logiciel Nvivo. Les résultats démontrent entre autres que les répondants éprouvent un niveau de certitude élevé face au diagnostic bien qu’il soit souvent signalé comme un défi important dans la littérature. Le pronostic représente un enjeu crucial, y compris sa divulgation aux proches. Enfin, la relation avec la famille est un élément clé dans la prise en charge des patients et celle-ci est teintée par de multiples facteurs.<br>Coma, the vegetative state and the minimally conscious state are classified as “disorders of consciousness”. The common characteristic of these diagnoses is an altered state of consciousness. Technological advances now allow us to keep people afflicted with these diagnoses alive. The very nature of their condition and the type of care available to them has lead to important medical and ethical dilemmas. First, this thesis proposes a literature review of the ethical and social issues related to disorders of consciousness. Certain issues have persisted for years and others have emerged more recently as that relating to the use of neuroimaging. The second part proposes a qualitative study examining the perspectives and experiences of healthcare professionals dealing with ethical issues in the management of these patients; these aspects are so far poorly documented. We conducted this study using a short questionnaire and semi-directed interviews. The interviews were taped and analyzed using qualitative analysis software Nvivo. Our study showed that our participants experienced a high degree of certainty about the diagnosis, although the latter is often reported as a major challenge in the literature. The prognosis is a critical challenge, including its disclosure to relatives. Finally, the relationship with the family is a key element in the care of patients and it is influenced by multiple factors.

Bien que largement accepté dans la communauté médicale, le concept de mort cérébrale est encore mal compris par certains professionnels de la santé et par le public en général. Il est au centre de débats et demeure une source de controverses. Malgré la confusion et les variations de pratiques documentées, les sources d’incertitudes et de confusion entourant le concept n’ont pas encore été étudiées en profondeur. Pourtant, cette confusion est à même d’influencer les débats et les décisions de fin de vie et de don d’organes, et soulève ainsi de sérieuses considérations tant éthiques que médicales. Ce mémoire de maîtrise propose d’abord une revue de la littérature discutant des origines, de l’évolution et des débats en lien avec le concept de mort cérébrale et les enjeux éthiques associés. Les approches méthodologiques utilisées pour la réalisation de cette recherche sont ensuite décrites. Les résultats découlant de l’analyse de contenu qualitative de médias canadiens et américains des différentes représentations de la mort cérébrales qu’on y retrouve suivent. Ces résultats décrivent l’utilisation du terme de « mort cérébrale » dans des contextes de don d’organes, de définitions de la mort cérébrale, de détermination de la mort, d’enjeux de fin de vie, d’enjeux légaux ainsi que des usages familiers du terme. Finalement, une discussion générale quant au rôle de la terminologie utilisée pour parler du concept de mort cérébrale puis celui des professionnels de la santé impliqués dans sa détermination et les pratiques de don d’organes, ainsi que des recommandations pour le futur concluront ce mémoire.<br>Despite being widely accepted by the medical community, the concept of brain death is still misunderstood by healthcare providers and the general public. It is central to several debates and remains a source of controversy. In spite of documented practice variations and conceptual confusion surrounding brain death, the upstream sources of variability and uncertainty have not been extensively investigated. This confusion is likely to influence debates and decisions about end-of-life and organ donation, and thus raises serious medical and ethical considerations. This thesis first proposes a review of the literature discussing the origins, the evolution and the debates related to the concept of brain death, as well as the ethical issues associated with brain death. The methodological approaches used for the realization of this research are then described. The results obtained from the qualitative content analysis of Canadian and American media about the different depictions of brain death follow. These results describe the use of the term “brain death” in contexts of organ donation, definitions of brain death, determination of death, end-of-life issues, legal issues and also colloquial uses of the term. Finally, a general discussion about the role of the terminology used to discuss the concept and that of healthcare professionals involved in its determination and organ donation practices, as well as recommendations for the future will conclude this thesis.<br>Domaine de recherche: Bioéthique

L’émergence de l’utilisation du méthylphénidate (MPH; Ritalin) par des étudiants universitaires afin d’améliorer leur concentration et leurs performances universitaires suscite l’intérêt du public et soulève d’importants débats éthiques auprès des spécialistes. Les différentes perspectives sur l’amélioration des performances cognitives représentent une dimension importante des défis sociaux et éthiques autour d’un tel phénomène et méritent d’être élucidées. Ce mémoire vise à examiner les discours présents dans les reportages internationaux de presse populaire, les discours en bioéthique et en en santé publique sur le thème de l’utilisation non médicale du méthylphénidate. Cette recherche a permis d’identifier et d’analyser des « lacunes » dans les perspectives éthiques, sociales et scientifiques de l’utilisation non médicale du méthylphénidate pour accroître la performance cognitive d’individus en santé. Une analyse systématique du contenu des discours sur l’utilisation non médicale du méthylphénidate pour accroître la performance cognitive a identifié des paradigmes divergents employés pour décrire l’utilisation non médicale du méthylphénidate et discuter ses conséquences éthiques. Les paradigmes « choix de mode de vie », « abus de médicament » et « amélioration de la cognition » sont présents dans les discours de la presse populaire, de la bioéthique et de la santé publique respectivement. Parmi les principales différences entre ces paradigmes, on retrouve : la description de l’utilisation non médicale d’agents neuropharmacologiques pour l’amélioration des performances, les risques et bénéfices qui y sont associés, la discussion d’enjeux éthiques et sociaux et des stratégies de prévention et les défis associés à l’augmentation de la prévalence de ce phénomène. La divergence de ces paradigmes reflète le pluralisme des perceptions de l’utilisation non médicale d’agents neuropharmacologiques Nos résultats suggèrent la nécessité de débats autour de l’amélioration neuropharmacologique afin de poursuivre l’identification des enjeux et de développer des approches de santé publique cohérentes.<br>The non-medical use of neuropharmaceuticals has sparked ethical debates. For example, there is mounting evidence that methylphenidate (MPH; Ritalin) is being used by healthy university students to improve concentration, alertness, and academic performance, a phenomenon known as cognitive enhancement. The different perspectives on the ethics of cognitive enhancement represent an important dimension of the social and ethical challenges related to such practices but have yet to be examined thoroughly. This thesis aimed to assess existing positive and negative reports in international print media, bioethics literature, and public health literature on the use of MPH to identify and analyze gaps in the ethical, social, and scientific perspectives about the non-medical use of MPH for cognitive enhancement in healthy individuals. A systematic content analysis of discourses on the non-medical use of methylphenidate for cognitive enhancement identified divergent frameworks employed to describe the non-medical use of methylphenidate and discuss its ethical implications: The frameworks of “lifestyle choice”, “prescription drug abuse” and “cognitive enhancement” are present in print media, bioethics, and public health discourses respectively. Important differences between frameworks include the description of the non-medical use of neuropharmaceuticals for cognitive enhancement, associated risks and benefits, discussion of ethical and social issues surrounding the phenomenon and the prevention strategies and challenges to the widespread use of neuropharmaceuticals for cognitive enhancement. Diverging frameworks reflect pluralism in perceptions if the non-medical use of neuropharmaceuticals for cognitive enhancement. At this time, unacknowledged pluralism and implicit assumptions about cognitive enhancement may impede public health interventions and ethics discussions.

Les récents progrès en neuroimagerie ont permis, au cours des dernières années, de faire avancer les connaissances sur les maladies neurologiques et psychiatriques en offrant la possibilité de mieux comprendre l’évolution des maladies neurodégénératives et la nature du comportement, des émotions, de la personnalité, et de la cognition. Plusieurs défis éthiques ont émergés suite à l’utilisation de ces nouvelles technologies d’imagerie cérébrale. La perspective des chercheurs concernant les pratiques d’évaluation des protocoles de recherche en neuroimagerie ainsi que les défis éthiques, sociaux et légaux auxquels font face les chercheurs n'ont pas encore été étudiés, même s’ils constituent des acteurs clés. Nous avons entrepris une étude empirique sur les perspectives des chercheurs quant au processus d'évaluation par les comités d’éthique de la recherche (CÉR) afin d’examiner les enjeux éthiques, légaux et sociaux liés à la pratique de la neuroimagerie au Canada. Pour ce faire, nous avons expédié un questionnaire en ligne et réalisé des entrevues semi-structurées avec des chercheurs en neuroimagerie et des présidents des CÉR. Les entrevues ont été transcrites et analysées à l'aide du logiciel d'analyse qualitative Nvivo. Nos résultats ont mis en lumière plusieurs aspects éthiques légaux et sociaux suscitant une attention particulière afin de remédier aux défis actuels dans la recherche en neuroimagerie ainsi qu’au processus d’évaluation de la recherche par les CÉR. Nos données comportent également des recommandations provenant des chercheurs eux-mêmes afin d'améliorer le processus d'évaluation. Finalement, notre propre expérience avec cette étude multicentrique nous a permis de constater plusieurs des défis mentionnés par les chercheurs.<br>Over the past years, advances in neuroimaging have allowed for a better understanding of neurologic and psychiatric disorders and yielded insights into behavior, emotion, personality, and cognition as well as allowed for a deeper understanding of neurodegenerative diseases. In light of the uses of these new imaging technologies, several ethical issues have emerged. The perspectives of researchers on current ethics review of neuroimaging protocols and ethical, legal and social issues present in neuroimaging have not been investigated, even though they are key stakeholders. We undertook an empirical study of researcher perspectives regarding the REB review process to examine ethical, legal and social issues associated with the practice of neuroimaging in Canada. We conveyed an online questionnaire survey and conducted semi-structured interviews with neuroimaging researchers and REB chairs. Interviews were transcribed and analyzed using the NVivo qualitative analysis software. Our results put into perspective emerging ethical, social and legal issues which are important challenges to address in the field of neuroimaging as well as practical challenges in the REB process. Our data also contain recommendations, coming from the neuroimagers themselves, in order to improve the evaluation process. Finally, our experience conducting this research has allowed us to confirm the challenges and stakeholders faced by neuroimagers.