Thesis (M.Phil.)--Stellenbosch University, 2000. / ENGLISH ABSTRACT: The aim of this research is to identify the various levels of health care units, their relationships and the problems hindering an effective referral system. To achieve this goal, use is made of a case study of the West Rand area in Gauteng. The standpoint is that, to achieve Primary Health for all South Africans referral systems within health care units and levels must be reciprocal. It is argued that for Primary Health Care to be successful, it must satisfy the goal of affordability appropriateness and accessibility. Results from the research revealed that four health care levels, namely traditional healers, health NGOs, Clinics, and Hospitals. Though there is some degree of referral in the study area, it was observed that referrals in the study area were not reciprocal. Amongst the major problems identified as hindering an effective referral system in the study area, include lack of cooperation between health institutions, poor health infrastructure and communication network as well as lack of other health paraphernalia. The research also found that government policy towards some of the health institutions (Traditional healers) contributes to the inefficiency of proper referrals in the study area. / AFRIKAANSE OPSOMMING: Die oogmerk van hierdie ondersoek is om die verskillende vlakke van gesondheidsorgeenhede, hulonderlinge verbande en die probleme wat doeltreffende verwysings in die wiele ry, te identifiseer. Dit word gedoen aan die hand van 'n gevallestudie van die Wes-Randarea in Gauteng. Die uitgangspunt is dat doeltreffende Primêre Gesondheid vir alle Suid- Afrikaners afhang van resiprokale verwysingsisteme tussen gesondheidsorgeenhede en -vlakke. Suksesvolle Primêre Gesondheidsorg vereis bekostigbaarheid, toepaslikheid en toeganklikheid. Die ondersoek het vier gesondheidsorgvlakke aan die lig gebring: tradisionele genesers, gesondheids-nie-regerings-organisasies, klinieke en hospitale. Hoewel daar 'n mate van onderfinge verwysing in die studie-area bestaan, was dit nie wederkerig nie. Onder die vernaamste struikelblokke vir 'n doeltreffende verwysingsisteem tel swak samewerking tussen gesondheidsinstellings, gebrekkige gesondheidsinfrastruktuur en kommunikasienetwerk, en 'n skaarste aan ander gesondheidsmiddelle. Die ondersoek het ook bevind dat regeringsbeleid aangaande sommige van die gesondheidsinstellings (tradisionele genesers) bydra tot die ondoeltreffendheid van verwysings in die studie-area.

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Le contexte particulier du dopage suscite de nombreuses questions à l'égard des obligations et de la responsabilité des médecins. Suivant le Code médical du Mouvement olympique (2005), les médecins doivent respecter les principes de l'éthique médicale et ceux de l'éthique sportive, comme le fairplay. Il arrive parfois que l'éthique sportive entre en conflit avec l'éthique médicale. Les médecins sont alors confrontés à d'importants dilemmes qui peuvent engager leur responsabilité professionnelle et civile. Ces dilemmes se situent notamment au niveau de l'obligation de soins et du secret professionnel. Par exemple, les médecins peuvent-ils prescrire des médicaments pour contrer les effets néfastes du dopage afin de préserver la santé des athlètes ? La question de la recherche sur l'amélioration de la performance est également préoccupante. En raison du caractère clandestin de cette recherche, il y a lieu de se demander si les médecins qui y participent respectent leurs obligations professionnelles. L'analyse des principaux instruments normatifs applicables en l'espèce démontre que les médecins ne doivent pas être placés dans une situation telle qu'ils doivent refuser de suivre des athlètes de crainte d'être accusés de dopage. De plus, le secret professionnel devrait être maintenu lorsqu'un médecin suit un athlète dopé afin de préserver la relation de confiance. Finalement, l'analyse du contexte de la recherche portant sur l'amélioration de la performance révèle que les médecins ne respectent pas toujours leurs obligations. Les médecins fautifs risquent donc d'engager leur responsabilité professionnelle et civile et de faire face à des sanctions sévères. / The particular context of doping raises many questions regarding the obligations and the liability of physicians. According to the Medical Code of the Olympic Movement (2005), physicians must respect the principles of medical ethics as well as those of sport ethics, such as fair play. Sometimes, sport ethics conflicts with medical ethics. Therefore, physicians are confronted with important dilemmas, which could engage their professional and civil liability. These dilemmas concern, in particular, the duty of care and professional secrecy. For example, could physicians prescribe drugs to counter the side effects of doping in order to preserve the health of the athletes? Issues surrounding research on the improvement of performance is also of interest. Because of the often clandestine nature of this research, it should be asked whether physicians who participate respect their professional obligations. An analysis of the principal normative documents applicable demonstrates that physicians should not be placed in a situation where they would refuse to treat athletes because of fear of accusations of doping. Moreover, professional secrecy should be maintained when a physician follows an athlete in order to preserve the relation of trust. Finally, the analysis of the context of the research on the improvement of performance reveals that physicians don't always respect their obligations. These physicians might engage their professional and civil liability and face severe sanctions.

Die vorliegende Arbeit untersucht die Einstellung und den Umgang von medizinischem Fachpersonal und Laien gegenüber Sterbehilfein Deutschland und Israel sowie die ethische Diskussion zu Fragen bezüglich des Lebensendes in beiden Ländern. Datengrundlage bilden die empirischen Untersuchungen aus beiden Ländern aus den Jahren 1990-2011, welche mittels eines qualitativen Literaturvergleichs (narrative synthesis) ausgewertet werden. Im zweiten Schritt wird analysiert, inwieweit ein Einfluss des soziokulturellen Hintergrundes auf die erarbeiteten Einstellungen zu Sterbehilfe feststellbar ist.

The purpose of this study was to investigate the process used by Haitians and Haitian Americans who must make healthcare decisions for a terminally ill family member. There is a large population of Haitians and Haitian Americans in South Florida and there has been no research regarding their decision-making process about end-of-life healthcare. The study design was descriptive, applying constructivist grounded theory methodology. Data were collected using semi-structured, face-to-face qualitative interviews. Data analysis and collection occurred simultaneously. Participants (n=12) were purposefully recruited, with 11 from a single, faith-based community. The findings resulted in six concepts: (1) imminent or actual death, (2) disrupted unity, (3) managing disrupted unity, (4) consequences, (5) restoring unity, and (6) creating memories you can live with. These six concepts, elaborated by an additional 17 dimensions, were incorporated into a process model relating to the cultural value of communal unity to the end-of-life decision-making process. The implications of this study include a need to improve the congruence between the nursing care provided at this vulnerable time and the cultural values of this population. Successful access to this population through the structure of the faith-based community points the way to increasing access to appropriate end-of-life healthcare. Practice implications informed by caring science include the importance of nurses’ coming to know the family and listening to the unique care needs. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2015. / FAU Electronic Theses and Dissertations Collection

This dissertation is the compilation of three separate works of research revolving around the theme of regulation of biomedical technologies that are either emerging or that have undergone significant developments over the past decade or so. Each of these three research works examines a legal response to a technological development in the areas of biotechnology and/or medicine and addresses one or more challenges - ethical, constitutional, legal or one that is related to public policy - created by that response. The first work of research, which was published in the Administrative Law Review in March 2008, examines the legality of the restrictions imposed by the administration of President George W. Bush on the funding of research involving human embryonic stem cells. Reaching the conclusion that the Bush Administration's actions were outright illegal in more than one way, the research highlights existing tensions in the division of decision-making power between the President and executive agencies and between Congress and the President. The second work of research, which was published in the Columbia Science and Technology Law Review in August 2010, reviews the regulation of genetic screening and testing of donated reproductive tissue in the United States. Analyzing the regulation in the federal, state and industry level, the research highlights significant shortcomings of the regulation of this area and, drawing on the experience of other countries, advocates the regulation of this area by the FDA. The third and last work of research of which this dissertation consists is dedicated to the examination of the newly created regime of statutory exclusivities afforded to biological pharmaceuticals under the Biologics Price Competition and Innovation Act (BPCIA) as it compares to the protection afforded to such products under patent law. The research concludes that allowing biological pharmaceuticals to benefits from parallel protection under both patent law and the statutory exclusivities regime established under BPCIA does not contribute to incentivizing innovation and might have undesirable ramifications from a public policy perspective. Hence, the research proposes limiting the protection afforded to biological pharmaceutical products, namely to the protection under either patent law or BPCIA, by suspending the ability to enforce patents covering biological pharmaceuticals against generic applicants under BPCIA. In addition, the research examines the proposition that under some circumstances it would be possible to substitute patent protection for statutory exclusivities.

The rarity of a disease can give rise to challenges that differ from conventional diseases. For example, rarity hampers research and development of new drugs, and patients with severe, rare diseases have limited access to qualified treatments. When drugs are available, clinical evidence has higher uncertainty and the drugs can be very expensive. When setting priorities in the healthcare sector, treatments aimed at patients with rare diseases, so called orphan drugs, have become a source of concern. Orphan drugs seldom show solid evidence of effectiveness or cost-effectiveness. Still, treatments for rare disease patients, available on the European market, has increased rapidly since the adoption of a regulation offering incentives for research and development of orphan drugs. The question arises as to whether the publicly funded health care system should provide such expensive treatments, and if so, to what extent. This doctoral thesis aims to investigate healthcare priority setting and rare diseases in the context of orphan drug reimbursement. Priority setting for orphan drugs is located at the intersection of economic, ethical and psychological perspectives. This intersection is explored by studying the public’s view on the relevance of rarity when setting priorities for orphan drugs, and by examining how orphan drugs are managed when making reimbursement decisions in practice. Papers I and II in this thesis employ quantitative, experimental methods in order to investigate preferences for prioritising rare diseases, and the extent to which psychological factors influence such preferences. Papers III and IV employ qualitative methods to further explore what factors (apart from rarity) influence priority-setting decisions for orphan drugs, as well as how decisions regarding orphan drugs are made in practice in England, France, the Netherlands, Norway and Sweden. Combining quantitative and qualitative methods has provided a more comprehensive understanding of the topic explored in the thesis, and the methods have complemented each other. Paper I shows that there is no general preference for giving higher priority to rare disease patients when allocating resources between rare and common disease patients. However, results show that preferences for treating the rare patients are malleable to a set of psychological factors, in particular “proportion dominance”. Paper II shows that the identifiability of an individual has no, or a negative, influence on the share of respondents choosing to allocate resources to him/her (compared to a nonidentified individual). Paper III confirms that rarity per se is not seen as a factor that should influence priority-setting decisions (i.e. accept a greater willingness to pay for orphan drugs), however, other factors such as disease severity, treatment effect and whether there are treatment alternatives were seen as relevant for consideration. Paper IV explores the challenges with and solutions for orphan drug reimbursement, as perceived by different actors in five European countries. Perceived challenges are related to the components involved when making reimbursement decisions, to the reimbursement system, and to the acceptance of the final decision. Solutions are either specific for orphan drugs, or general measures that can be used for orphan drugs as well as for other drugs. In conclusion, priority setting for orphan drugs is complex and requires particular attention from decision makers. There are many factors to consider when making reimbursement decisions for orphan drugs. The consequences of a decision are potentially severe (both for rare disease patients and for common disease patients, depending on the decision) and psychological factors can potentially influence decisions.

Law, Wai Yan. / Thesis (M.Phil.)--Chinese University of Hong Kong, 2010. / Includes bibliographical references (leaves 83-92). / Abstracts in English and Chinese. / ABSTRACT --- p.I / 論文摘要 --- p.II / TABLE OF CONTENTS --- p.III / Chapter CHAPTER 1 --- INTRODUCTION --- p.1 / Chapter CHAPTER 2 --- LISA SOWLE CAHILL´ةS THEOLOGICAL BACKGROUND --- p.5 / Chapter 2.1 --- Introduction --- p.5 / Chapter 2.2 --- Cahill´ةs theological approach to Christian Ethics --- p.5 / Chapter 2.2.1 --- Catholicism --- p.6 / Chapter 2.2.2 --- Feminism --- p.9 / Chapter 2.2.3 --- Theological Anthropology --- p.16 / Chapter 2.3 --- Moral Methodology --- p.21 / Chapter 2.3.1 --- The Bible --- p.21 / Chapter 2.3.2 --- Tradition --- p.22 / Chapter 2.3.3 --- Normative Accounts of the Human --- p.24 / Chapter 2.3.4 --- Descriptive Accounts of the Human --- p.25 / Chapter 2.4 --- Conclusion --- p.26 / Chapter CHAPTER 3 --- LISA SOWLE CAHILL´ةS PARTICIPATORY THEOLOGICAL BIOETHICS --- p.28 / Chapter 3.1 --- Introduction --- p.28 / Chapter 3.2 --- Cahill´ةs Participatory Theological Bioethics --- p.28 / Chapter 3.2.1 --- Principle of Analysis --- p.29 / Chapter 3.2.1.1 --- Ordinary and Extraordinary means of life support --- p.30 / Chapter 3.2.1.2 --- Principle of double effect --- p.31 / Chapter 3.2.2 --- The common good and bioethics --- p.34 / Chapter 3.2.3 --- Theological bioethics and Social Transformation --- p.38 / Chapter 3.2.4 --- Summary --- p.40 / Chapter 3.3 --- Evaluation and Dialogue with Cahill´ةs Participatory Theological Bioethics --- p.41 / Chapter 3.3.1 --- Catholicism --- p.41 / Chapter 3.3.2 --- Feminism --- p.42 / Chapter 3.3.3 --- Common Good --- p.44 / Chapter 3.4 --- Conclusion --- p.46 / Chapter CHAPTER 4 --- END-OF-LIFE CARE IN HONG KONG --- p.47 / Chapter 4.1 --- Introduction --- p.47 / Chapter 4.2 --- End-of-life care in Hong Kong --- p.48 / Chapter 4.2.1 --- Decline and dying in Hong Kong --- p.48 / Chapter 4.2.2 --- Ethical judgments by the health care professions --- p.50 / Chapter 4.2.3 --- Advance directive --- p.54 / Chapter 4.2.4 --- Patients or family´ةs participation --- p.54 / Chapter 4.2.5 --- Chinese culture and Bioethics --- p.56 / Chapter 4.3 --- Christianity engagement in the end-of-life care in Hong Kong --- p.59 / Chapter 4.3.1 --- Christian communities --- p.59 / Chapter 4.3.2 --- Theology bioethics --- p.60 / Chapter 4.4 --- Conclusion --- p.61 / Chapter CHAPTER 5 --- PARTICIPATORY THEOLOGICAL BIOETHICS IN HONG KONG --- p.63 / Chapter 5.1 --- Introduction --- p.63 / Chapter 5.2 --- The significance and relevance of Participatory Theological Bioethics --- p.63 / Chapter 5.2.1 --- Both individual and social ethics --- p.64 / Chapter 5.2.1.1 --- Who is/are the poor? --- p.64 / Chapter 5.2.1.2 --- Inequalities in access to end-of-life care --- p.66 / Chapter 5.2.1.3 --- Medical paternalism --- p.71 / Chapter 5.2.2 --- Transcendent meanings of life --- p.73 / Chapter 5.3 --- INTERCULTURAL DIALOGUE OF PARTICIPATORY THEOLOGICAL BIOETHICS --- p.74 / Chapter 5.3.1 --- Familial relationship as a starting point --- p.75 / Chapter 5.3.2 --- Interpretation of ´بParticipatory´ة --- p.76 / Chapter 5.4 --- Conclusion --- p.80 / Chapter CHAPTER 6 --- CONCLUSION --- p.81 / BIBLIOGRAPHY --- p.83

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