Il presente lavoro approfondisce il pensiero di H.T. Engelhardt Jr. dal momento che la sua produzione permette di soffermarsi sul concetto di persona umana, concetto chiave per dirimere le questioni bioetiche che emergono nella società contemporanea caratterizzata da un intrinseco pluralismo. Dopo aver fornito un quadro dei caratteri della società postmoderna e della lettura che ne dà Engelhardt, sono stati analizzati i punti fondamentali del suo pensiero volto a sostenere una morale di tipo minimale e procedurale. Di contro alla sua impostazione, una corretta semantizzazione del concetto di persona umana risulta fondamentale per garantire la tutela di ogni essere umano rispetto alle questioni che sorgono intorno all’inizio e alla fine della vita e per riaffermare il potere della ragione umana di comprendere a fondo la realtà e di fornire una morale di tipo sostanziale. L’analisi infine della produzione di Engelhardt che scaturisce da un approccio fideistico alla fede cristiana è illuminante poi per avere un quadro completo del suo pensiero e per comprendere a fondo le radici della sfiducia che egli ripone nella ragione. / This dissertation explores the thought of H.T. Engelhardt Jr. since its production can dwell on the concept of human person, the key concept for resolving bioethical issues that arise in contemporary society characterized by intrinsic pluralism. After providing an overview of the characteristics of postmodern society and reading that gives Engelhardt, have been analyzed the fundamental points of his thought which supports a type of a minimal and procedural moral. In contrast to his setting, a proper semanticization of the concept of human person is essential to ensure the protection of every human being with respect to issues that arise around the beginning and the end of life and to reaffirm the power of human reason to understand in depth reality and provide a type of substancial moral. Finally the analysis of production of Engelhardt springing from a fideistic approach to the Christian faith is enlightening then to have a complete picture of his thought and to fully understand the roots of mistrust that he puts in reason.

Synthetic biology is a relatively new discipline within the field of biotechnologies. In essence it is the artificial creation of microorganisms. Though similar in principle, it differs from genetic engineering because it creates an organism from scratch, rather than cutting and pasting DNA (deoxyribonucleic acid) between existing organisms. This study investigates the ethical aspects (both rational and theological) concerned with synthetic biology through the use of a literature analysis. The study starts by investigating and describing the origins, pioneers, science and uses of synthetic biology. Secondly, it describes and ethically assesses the rational arguments for and against synthetic biology by comparing its benefits and risks. Lastly, the study describes and ethically assesses synthetic biology within the Reformed tradition, mainly by using the creational perspective of Christian ethical evaluations (including concepts such as creatio ex nihilio; creatio continua and imago Dei) and secondary the re-creational and eschatological perspectives. The final conclusion reached shows that synthetic biology is acceptable from a Reformed theological-ethical perspective, because humans as the image of God can create, just as God constantly creates new things and created a new universe from nothing. The rational arguments state that the potential benefits of synthetic biology surpass the risks it poses. Hence, it supports the idea that synthetic biology can be used to fulfil God’s commandment to love one’s neighbour, by improving his circumstances and activating hope. Nevertheless, Christians should always stay vigilant about motives and possible uses when dealing with new technologies. How and for what synthetic biology is used should in the future be constantly reviewed. In this way Christian scientists can still inquire about their work: Does it glorify God? / MA (Ethics), North-West University, Potchefstroom Campus, 2015

Synthetic biology is a relatively new discipline within the field of biotechnologies. In essence it is the artificial creation of microorganisms. Though similar in principle, it differs from genetic engineering because it creates an organism from scratch, rather than cutting and pasting DNA (deoxyribonucleic acid) between existing organisms. This study investigates the ethical aspects (both rational and theological) concerned with synthetic biology through the use of a literature analysis. The study starts by investigating and describing the origins, pioneers, science and uses of synthetic biology. Secondly, it describes and ethically assesses the rational arguments for and against synthetic biology by comparing its benefits and risks. Lastly, the study describes and ethically assesses synthetic biology within the Reformed tradition, mainly by using the creational perspective of Christian ethical evaluations (including concepts such as creatio ex nihilio; creatio continua and imago Dei) and secondary the re-creational and eschatological perspectives. The final conclusion reached shows that synthetic biology is acceptable from a Reformed theological-ethical perspective, because humans as the image of God can create, just as God constantly creates new things and created a new universe from nothing. The rational arguments state that the potential benefits of synthetic biology surpass the risks it poses. Hence, it supports the idea that synthetic biology can be used to fulfil God’s commandment to love one’s neighbour, by improving his circumstances and activating hope. Nevertheless, Christians should always stay vigilant about motives and possible uses when dealing with new technologies. How and for what synthetic biology is used should in the future be constantly reviewed. In this way Christian scientists can still inquire about their work: Does it glorify God? / MA (Ethics), North-West University, Potchefstroom Campus, 2015

This thesis is set in the context of social science’s interest in the generation of expectations, the news media, and neurotechnologies. It is a qualitative case study that examines the nature and impact of news media reporting of some pioneering research, which used functional magnetic resonance imaging in an attempt to diagnose and communicate with severely brain-injured individuals. Previous news media studies exploring neurotechnologies have been quantitative, or have tended to focus on how or why the news media represents neurotechnologies and/or the impact of the reporting, but rarely all three together. My thesis looks at all three aspects of the news media reporting of my case study. I draw on three sets of empirical data. First, those related to the production of the media - the press releases which reported the research; ten semi-structured interviews with science press officers; and the relevant expert comments posted on the Science Media Centre’s website. Second, 51 newspaper articles reporting the research. Third, five semi-structured interviews with relatives of severely brain-injured patients. I show that the mood of excitement and ‘breakthrough’ present in the press release reporting of this research was closely echoed in the news coverage. This excitement influenced the views and beliefs of only some of the relatives I interviewed. I then examine the nature of hype and by drawing on Haraway’s concept of ‘situated knowledges’ (1988) I argue that individuals view hype differently depending on their profession, industry and/or socio-cultural background. Finally, I show how whilst both the news media and the scholarly literature portrayed this research as ethically contentious, the issues most prominently discussed by scholars and/or journalists do not necessarily equate with relatives’ concerns. My findings aim to contribute to the sociology of expectations, media theory, the sociology of bioethics and the public understanding of science.

Thesis (PhD)--Stellenbosch University, 2012. / ENGLISH ABSTRACT: Autonomy and informed consent are two interrelated concepts given much prominence in contemporary biomedical discourse. The word autonomy, from the Greek autos (self) and nomos (rule), originally referred to the self-governance of independent Hellenic states, but was extended to individuals during the time of the Enlightenment, most notably through the work of Immanuel Kant and John Stuart Mill. In healthcare, the autonomy model is grounded in the idea of the dignity of persons and the claim people have on each other to privacy, self-direction, the establishment of their own values and life plans based on information and reasoning, and the freedom to act on the results of their contemplation. Autonomy thus finds expression in the ethical and legal requirement of informed consent. Feminists and multiculturalists have however argued that since autonomy rests on the Enlightenment ideals of rationality, objectivity and independence, unconstrained by emotional and spiritual qualities, it serves to isolate the individual and thus fails to rectify the dehumanisation and depersonalisation of modern scientific medical practice. It only serves to exacerbate the problematic power-differential between doctor and patient. Medicine is a unique profession since it operates in a space where religion, morality, metaphysics, science and culture come together. It is a privileged space because health care providers assume responsibility for the care of their patients outside the usual moral space defined by equality and autonomy. Patients necessarily relinquish some of their autonomy and power to experts and autonomy thus cannot account for the moral calling that epitomizes and defines medicine. Recognition of the dependence of patients need not be viewed negatively as a lack of autonomy or incompetence, but could rather reinforce the understanding of our shared human vulnerability and that we are all ultimately patients. There is however no need to abandon the concept of autonomy altogether. A world without autonomy is unconceivable. When we recognise how the concept functions in the modern world as a social construct, we can harness its positive properties to create a new form of identity. We can utilise the possibility of self-stylization embedded in autonomy to fashion ourselves into responsible moral agents that are responsive not only to ourselves, but also to others, whether in our own species or in that of another. Responsible agency depends on mature deliberators that are mindful of the necessary diversity of the moral life and the complex nature of the moral subject. I thus argue that the development of modern individualism should not be rejected altogether, since we cannot return to some pre-modern sense of community, or transcend it altogether in some postmodern deconstruction of the self. We also do not need to search for a different word to supplant the concept of autonomy in moral life. What we rather need is a different attitude of being in the world; an attitude that strives for holism, not only of the self, but also of the moral community. We can only be whole if we acknowledge and embrace our interdependence as social and moral beings, as Homo moralis. / AFRIKAANSE OPSOMMING: Outonomie en ingeligte toestemming is twee nou verwante konsepte wat beide prominensie in moderne bioetiese diskoers verwerf het. Die woord outonomie, van die Grieks autos (self) en nomos (reël), het oorspronklik verwys na die selfbestuur van onafhanklike Griekse state, maar is in die tyd van die Verligting uitgebrei om ook na individue te verwys, grotendeels deur die werk van Immanuel Kant en John Stuart Mill. In medisyne is die outonomie model gegrond op die idee van die waardigheid van die persoon en die beroep wat mense op mekaar het tot privaatheid, selfbepaling, die daarstelling van hulle eie waardesisteem en lewensplan, gebasseer op inligting en redenasie, en die vryheid om op die uitkoms van sulke redenasie te reageer. Outonomie word dus vergestalt in die etiese en wetlike bepaling van ingeligte toestemming. Feministe en multikulturele denkers beweer egter dat, siende outonomie gebasseer is op die Verligting ideale van rasionaliteit, objektiwiteit en onafhanklikheid, sonder die nodige begrensing deur emosionele en spirituele kwaliteite, dit die individu noodsaaklik isoleer en dus nie die dehumanisering en depersonalisering van moderne wetenskaplike mediese praktyk teenwerk nie. As sulks, vererger dit dus die problematiese magsverskil tussen die dokter en pasiënt. Die beroep van medisyne is ‘n unieke professie aangesien dit werksaam is in die sfeer waar geloof, moraliteit, metafisika, wetenskap en kultuur bymekaar kom. Dit is ‘n bevoorregde spasie aangesien gesondheidswerkers verantwoordelikheid vir die sorg van hulle pasiënte aanvaar buite die gewone morele spasie wat deur gelykheid en outonomie gedefinieer word. Pasiënte moet noodgedwonge van hulle outonomie en mag aan deskundiges afstaan en outonomie kan dus nie genoegsaam die morele roeping wat medisyne saamvat en definieer, vasvang nie. Bewustheid van die afhanklikheid van pasiënte hoef egter nie in ‘n negatiewe lig, as gebrek aan outonomie of onbevoegtheid, beskou te word nie, maar moet eerder die begrip van ons gedeelde menslike kwesbaarheid en die wete dat ons almal uiteindelik pasiënte is, versterk. Dit is verder nie nodig om die konsep van outonomie heeltemal te verwerp nie. ‘n Wêreld sonder outonomie is ondenkbaar. Wanneer ons bewus word van hoe die konsep in die moderne wêreld as ‘n sosiale konstruk funksioneer, kan ons die positiewe aspekte daarvan inspan om ‘n nuwe identiteit te bewerkstellig. Ons kan die moontlikheid van self-stilering, ingesluit in outonomie, gebruik om onsself in verantwoordelike morele agente te omskep sodat ons nie slegs teenoor onsself verantwoordelik is nie, maar ook teenoor ander, hetsy in ons eie spesie of in ‘n ander. Verantwoordelike agentskap is afhanklik van volwasse denkers wat gedagtig is aan die noodsaaklike diversiteit van die morele lewe en die komplekse aard van die morele subjek. Ek voer dus aan dat die ontwikkeling van moderne individualisme nie volstrek verwerp moet word nie, siende dat ons nie na ‘n tipe premoderne vorm van gemeenskap kan terugkeer, of dit oortref deur ‘n postmoderne dekonstruksie van die self nie. Ons het verder ook nie ‘n nuwe woord nodig om die konsep van outonomie in die morele lewe mee te vervang nie. Ons het eerder ‘n ander instelling van ons menswees in die wêreld nodig; ‘n instelling wat streef na volkomendheid, nie net van onsself nie, maar ook van die morele gemeenskap. Ons kan slegs volkome wees wanneer ons ons interafhanklikheid as sosiale en morele entiteite, as Homo moralis, erken en aangryp.

Medical Academia Conflict of Interest Policy and Potential Impact on Research Funding by Michael K. Maahs MPA, Troy University, 1993 BA, Ripon College, 1990 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy Public Policy and Administration Walden University July 2015 The partnership between medical academia and the pharmaceutical industry has been scrutinized for issues associated with research bias. As a result of this scrutiny, the Institute of Medicine (IOM) issued policy recommendations in 2009 directing academia to adopt comprehensive conflict of interest (COI) policies. During the same time, a slowdown of funded research into academia occurred, and it is not clear whether the IOM recommendations contributed to this problem. The purpose of this case study was to determine the extent to which compliance with the IOM policy resulted in a reduction in funded research. The Advocacy Coalition Framework (ACF) was the theoretical lens used for study. COI policy statements (n = 15) were analyzed from American Association of Medical Colleges member schools that engage in medical research. In addition, in-depth interviews were conducted with 4 medical academic researchers. Data were inductively coded and organized around key themes. Key findings indicated that medical academia is compliant with IOM recommendations and COI policies did not appear to have a direct effect on research placement by industry. Interestingly, a possible explanation for reductions in industry funding relate to inefficient institutional review board processes. Additionally, the ACF construct was validated via an observed complex and slowly evolving COI policy process. The positive social change implications of this study include recommendations to academia to continue to monitor and report on COI and explore efficiency improvements related to IRB oversight in order to support important pharmaceutical research that ultimately improves the health and wellbeing of people.

The question this dissertation seeks to address is if the process of disease mongering can be ethically assessed. Chapter one provides a broad scope of the ethical challenge of disease mongering, UNESCO model framework, ADHD and PMDD. Chapter two examines disease mongering and its driving forces in detail. Chapter three provides an overview of the UNESCO model framework. Chapter four ethically examines disease mongering in conjunction with Attention Deficit Hyperactivity Disorder (ADHD). Chapter five examines disease mongering in association with Premenstrual Dysphoric Disorder (PMDD). Chapter six concludes that examined through the UNESCO model ethical framework disease mongering is occurring for both ADHD and PMDD, and provides remarks for the addressing this in the future. / McAnulty College and Graduate School of Liberal Arts; / Health Care Ethics / PhD; / Dissertation;

L'ambivalence entourant actuellement l'appréhension de l'humain confine parfois à l'ambiguïté. Telle est le constat auquel le chercheur se doit de faire face dès lors qu'il s'attache à étudier ce vaste sujet. Tiraillé entre deux mouvements opposés, l'humain semble osciller entre sacralité et disponibilité, entre protection et libéralisation. Il est soumis à un mouvement permanent d'appréciations contradictoires, rendant délicate, et peut être même illusoire, toute fixation d'une appréhension pérenne. Pourtant, paradoxalement, la nécessité de dégager un axiome durable destiné à guider les réflexions n'a jamais été aussi grande. Car, les développements scientifiques, la montée du libéralisme, mais également l'apparition d'un individualisme social projettent l'humain dans un mouvement utilitariste suscitant parfois l'inquiétude. L'outil juridique dans sa "rigidité" a en effet du mal à percevoir cette réalité particulière. Il n'a pas été originellement créé dans ce but. Il sait s'occuper des rapports pouvant exister entre les catégories qu'il a établies, mais rencontre quelques difficultés lorsqu'il s'agit d'appréhender une entité "hors-cadre". Dès lors, pour véritablement comprendre nous nous devons de nous installer dans une "schizophrénie" analytique. Nous devons accepter que l'humain ne représente pas en droit, une personne ou une chose, mais bien les deux à la fois. Qu'il ne peut être "sacralisé" ni rendu "disponible" complètement. Qu'il est un "tout" complexe et un "complexe" de tout, qu'il est une unicité "janusienne", une unicité à double visage. / The ambivalence surrounding at present the apprehension of the human sometimes borders on the ambiguity. Such is the report which the researcher owes face since he attempts to study this vast subject. Pulled between two opposite movements, human seems to oscillate between sacrality and availability, between protection and liberalization. It is subjected to a permanent movement of contradictory appreciations, making delicate, and can be even imaginary, any binding of a long-lasting apprehension. Nevertheless, paradoxically, the necessity of loosening a sustainable axiom intended to guide the reflections was never so big. Because, the scientific developments, the ascent of the liberalism, but also the appearance of a social individualism plan human in a movement utilitarian sometimes arousing the anxiety. The legal tool in its "rigidity" indeed has difficulty in perceiving this particular reality. It was not create originally in this purpose. He knows how to take care of connections which can exist between the categories that he established, but meets some difficulties when it is a question of dreading an entity "except frame". From then on, to understand really we owesettle down in an analytical "schizophrenia". We have to accept that human does not represent in law, a person or a thing, but both at once. That he cannot be "made sacred" nor made "available" completely. That it is a "quite" complex and a "complex" of everything, that it is a uniqueness "janusienne", a uniqueness with double face.

Personal autonomy is often lauded as a key value in contemporary bioethics. In this thesis, I aim to provide a rationalist account of personal autonomy that avoids the philosophical flaws present in theories of autonomy that are often invoked in bioethics, and that can be usefully applied to contemporary bioethical issues. I claim that we can understand the concept of autonomy to incorporate two dimensions, which I term the 'reflective' and 'practical' dimensions of autonomy. I suggest that the reflective dimension pertains to the critical reflection that agents must carry out on their motivating desires, in order to be autonomous with respect to them. I begin by rejecting prominent desire-based and historical accounts of this dimension of autonomy, before going on to defend an account based upon a Parfitian analysis of rational desires. Following this analysis of the reflective dimension of autonomy, I argue that autonomy can also be understood to incorporate a practical dimension, pertaining to the agent's ability to act effectively in pursuit of their ends. I claim that recognising this dimension of autonomy more comprehensively reflects the way in which we use the concept of autonomy in bioethics, and makes salient the fact that agents carry out their rational deliberations in the light of their beliefs about what they are able to do. I go on to argue that this latter point means that my account of autonomy can offer a deeper explanation of why coercion undermines autonomy than other prominent accounts. Having considered the prudential value of autonomy in the light of this theoretical analysis, in the latter half of the thesis I apply my rationalist account of autonomy to a number of contemporary bioethical issues, including the use of human enhancement technologies, the nature of informed consent, and the doctor-patient relationship.

<b>Background</b>: The world is at risk of epidemics of novel and reemerging infectious diseases. These may be national, regional or international as in the case of Nipah, African Viral Haemorrhagic Fevers, SARS and H1N1 respectively. It is crucial that public health and clinical research is conducted in such epidemics. Yet the conduct of heath research during rapidly evolving epidemics or disasters represents an enormous challenge. In addition to the large number of practical challenges to undertaking such research there are also major ethical issues to consider. However, there is very little understanding of these ethical issues and very little empirical evidence of the views of patients, their families, society and key stakeholders. <b>Objective</b>: To collect and analyse data on ethical considerations arising in the setting of research on rapidly evolving epidemics posed by the urgent and unpredictable nature of epidemics. <b>Design</b>: The study was conducted in Oxford University Clinical Research Unit (OUCRU), Viet Nam and 3 other hospitals in Viet Nam with experience of epidemics. Data were collected by semi-structured interviews with key stakeholders representing research staff, IRB members, patients/family members and study sponsors/funders who have participated in or reviewed research projects on infectious diseases including SARS, H5N1, H1N1, dengue and Hand, Foot, Mouth disease. <b>Result</b>: A total of 64 interviews with all key stakeholders were conducted. Analysis of the ethical problems/challenges discussed in the interviews led to the identification of three themes 1) International research collaboration, 2) IRB review and 3) Consent. These tended to arise at three levels of relationship: macro (between institutions internationally), meso (within and between institutions nationally) and micro (within institutions and between health professionals and patients). <b>Conclusion</b>: The issues and types of considerations and their relative importance were raised and/or valued differently by the members of different key stakeholder groups due to their role and experience in research participation. Some of the issues raised also related to health research in other settings. However, many were unique to the setting of rapidly evolving epidemics. Addressing these issues is crucial for successful and appropriate research in the context of epidemics. It is inevitable that epidemics of emerging and reemerging infectious diseases will occur in the future and there is a clear need to undertake crucial scientific research in such settings. It is therefore imperative that we understand the challenges and ethical issues surrounding such research. It is desirable that further research into the ethical challenges identified in this thesis takes place in the inter-epidemic period in order to better prepare for the next epidemic.