Thesis (Ph.D.)--Boston University / PLEASE NOTE: Boston University Libraries did not receive an Authorization To Manage form for this thesis or dissertation. It is therefore not openly accessible, though it may be available by request. If you are the author or principal advisor of this work and would like to request open access for it, please contact us at open-help@bu.edu. Thank you. / Ethical theory has attempted to be both moral and factual but has had difficulty in being both. I believe an analysis of attempts to strike a balance between the two will show where progress has been made and where we might expect more progress in the future. After establishing a meaaure by which to analyze the balancing of the moral and the factual, that measure will be used on traditional ethical theory. It will be found that difficulties with the factual are most bothersome, so we will turn to the fields which are concerned with the facts of human action, the social sciences. Having learned more about the factual, we will turn to Max Scheler's ethical theory because his phenomenological approach to ethics renders some unique and fruitful solutions not offered by other extant ethical theories to difficulties with the factual. Even Scheler's solutions to those difficulties do not enable a balance to be struck between the moral and the factual, however, so I conclude that finding a balance may well be too difficult even though progress is made in the attempt. [TRUNCATED] / 2031-01-01

In this research report, I question the moral justification of bureaucracy. After pointing out some arguments in favour of bureaucracy and some teleological, or result-based, arguments against bureaucracy, I pay particular attention to deontological, or process-based, moral arguments against bureaucracy. The two main arguments against bureaucracy that I address are (1) that bureaucracies constitute unfair decision making procedures in democratic societies, and (2) that bureaucracies treat their participants (both clients and workers) disrespectfully. I then give some suggestions of what a promising alternative to bureaucracy might look like, based on the two main arguments against bureaucracy that I consider. Ultimately, I conclude that it is still an open question whether bureaucracy is morally justified, but that my research brings to the fore some serious moral problems with bureaucracy that are worth taking note of. Even if it turns out that the results of bureaucratic organisation are so beneficial that bureaucracy is, all things considered, justified, the moral problems that I point out in this research are worth serious consideration.

Thesis (M.Sc.(Med.) (Bioethics and Health Law))--University of the Witwatersrand, Faculty of Health Sciences, 2014. / With the completion of the Human Genome project, advances in bioinformatics, computational biology and scientific techniques, human genetic research has established itself as a leading focus of study for many involved in the biological research world. However with all forms of research comes the relevant ethical procedure to guide these studies. Human genetic studies are especially intricate in their ethics evaluations as not only do they require biological material to be obtained from an individual or group of individuals but it in turns gives a researcher access to one’s own personal genetic code, i.e. DNA sequence. Such information has become extremely useful in identifying predispositions and causative factors for certain diseases, identifying possible phenotypic traits, clues into one’s ancestry as well as the overall potential for commercial gain by pharmaceutical companies in drug and gene therapy research and development through acts of gene patenting. Thus with the biological world completely open to exploitation, the need for various control regulations and guidelines to be further developed to address these issues persists. The main questions addressed in studies such as these are those of ownership - who does the sample belong to - access and benefit sharing should any product be developed from information gathered from these samples, consent for use of these samples outside its intended purpose as well as protection of vulnerable groups for unique genetics studies. There are four main sections in this report. First the concepts of Genomic Sovereignty and Common heritage are discussed. Following this, some philosophical theories of ownership are investigated to provide justification toward the concept of ownership with regard to the human body and international bioethical guidelines are then discussed with regard to research involving samples of human genetic material from population groups. The third section is an analysis of the law with regard to ownership, patenting and benefit sharing from research using human genetic material. The fourth section synthesizes the information of the previous 3 sections to produce an alternate approach in dealing with research involving human genetic material from population groups.

A research report submitted to the Faculty of Health Sciences, Steve Biko Centre for Bioethics, University of the Witwatersrand, in partial fulfillment of the requirements for the degree of Master of Science in Medicine In the field of Bioethics and Health Law Johannesburg, 2011 / Although Human Biological Materials (HBMs) are invaluable resources in biomedical research, they have not been without controversy in collaborative research between developed and developing countries. The normative arm of the study compared the key ethical issues in the laws, regulations and guideline documents of developed and developing countries with regard to the use, collection, storage, export and benefit-sharing of HBMs in collaborative research with developed countries. The empirical arm of the study examined how investigators and a Research Ethics Committee (REC) at a South African institution addressed these ethical issues, implemented national and international frameworks with regard to the use of HBMs. The majority of sponsors (59.6%, 90/151) in the study were from the USA compared to other developed countries (p=0.0001) with the bulk (65.84%) of the funds (R517.19 million) allocated for HIV research. HBMs for storage was obtained largely from adults (80.8%, 122/151) compared to children (12.6%, 19/151) [p <0.0001]. Whilst the principle investigators (PIs) of all 151 protocols informed the REC of their intent to store HBMs, only 87.4% (132/151) of PIs informed research participants (P <0.0001). In 47.7% (72/151) and 71.5 % (57/151) of protocols research participants were informed of the location and duration of storage, respectively, compared to 86% (130/151) and 19.25% (29/151) informing the REC (p < 0.0001), respectively. In 98% (149/151) of protocols informed consent (IC) was obtained from research participants with 76.8% (116/151) of protocols soliciting broad consent compared to specific consent (21.2%, 32/151) [p < 0.0001]. In the remaining 2% (3/151) of protocols IC for storage was not obtained. In 69.5% (105/151) of protocols confidentiality was maintained by a code and in 9.35% (14/151) of protocols HBMs was anonymised [p < 0.0001]. Significantly more protocols informed the REC (90/151, 59.6%) than the research participants (67/151, 44.4%) that HBMs will be exported (p= 0.011). Separate consent forms were not available for 60.9% (92/151) of protocols as per the requirement REC’s standard operating procedures (SOP). In 74% (51/69) of protocols the rationale for export was to access specialised laboratories (74%, 51/69) that were not available locally. Export permits were not available for 73.2% (109/151) of protocols. Where export permits were available, there were more exports to the USA (31/42, 73.8%) than to Europe (26.2%, 11/42) [p < 0.0001]. In the majority of protocols research participants were not informed of benefit sharing from any discoveries (129/151, 85.4%) or commercialisation (123/151, 81.5%) of products derived from their HBMs. Material Transfer Agreements (MTAs) were not available for 94.7% (143/151) protocols. Whilst 122/151(80.8%) protocols disclosed the amount of funds available from the sponsors for the research to the REC, not a single PI made such disclosures to the research participants (p < 0.0001). The varied definitions of what constitutes HBMs, the different terminologies used to describe identifiability, confidentiality, the different models of informed consent and different standards of ownership in the various national and international frameworks are characterised by a maze of definitions, laws, regulations and guidelines that are confusing, conflicting and defy generalisation. International and national laws, regulations and guidelines are fragmented and lack harmonisation. Most developing countries are in favour of severe restrictions on the use of their HBMs in collaborative research with developed countries. The protocols in the empirical study did not adequately address the inter-related ethical issues of export, storage, IC, commercialisation and benefit sharing derived from HBMs that are currently the subject of intense debate and controversy and central to the access to HBMs in collaborative research with developed countries. Because the empirical study is limited by the use of a convenient sample, the results cannot be generalised to other RECs in South Africa. Nevertheless, the data gives some credibility to the anecdotal evidence that HBMs are leaving the country unaccounted for without export permits and MTAs in place. Given the long delays in harmonizing and publishing new regulations and changes, outdated regulations and regulatory frameworks create opportunities for the proliferation of undesirable and unethical practices. Omissions in the RSA regulatory and ethical frameworks with regard to HBMs and Tissue Biobanking are concerning and require urgent action.

Using patients in the training of healthcare students is required by the World Federation of Medical Educators. South African legal instruments such as the Constitution and the National Health Act recognise patients’ right to autonomy. This descriptive, analytical study investigated whether patients should be informed that the person involved in their care is a student. International studies and the ethical guidelines of regulating bodies support informing patients of the academic status of persons participating in their care. While patients are willing to participate in the training of healthcare students, they do not waive their right to informed consent. South African health care practitioners are increasingly required to disclose non-medical information to patients, such as treatment costs. Patients should be informed about the academic status of persons involved in their care and have the right to refuse to participate in medical education. The HPCSA should draw up guidelines to support this.

A Research Report submitted to the Faculty of Health Sciences, University of the Witwatersrand in partial fulfillment for the degree of Master of Science in Medicine: Bioethics and Health Law Faculty of Health Sciences University of the Witwatersrand, Johannesburg, South Africa. January 2017 / Doctors serving in public health services in Kenya under the employment of the Government went on strike in December 2011 and September 2012. The strikes were national and doctors withdrew all their services including attending to emergencies in hospitals. The reasons for the strikes were poor salaries, poor working conditions and poor state of public health services. The aim of this research was to analyse legal and ethical aspects of the strikes by doctors in Kenya and to explore ways to minimize harm to patients and society. The research examined the circumstances and contexts of the strike to enable an understanding of the status of health services and the nature of the demands by doctors. Kenyan laws relating to strikes were analysed to ascertain legal compliance or violations during the strikes. Obligations of the medical profession and ethical codes and rules of conduct for doctors were discussed in relation to the strike. Ethical theories of deontology, consequentialism and virtue ethics were applied to establish moral justification or lack thereof. Analysis of the legal provisions of the Labour Relations Act No.14 of 2007 revealed that it did not provide adequate processes for resolving trade disputes involving workers and employers in essential services. Suggestions were made on some ways to improve the conciliation process to foster appropriate resolution of disputes before strike action becomes necessary. Examination of the reasons for the strikes and status of public health services revealed that there were compelling reasons and circumstances for the strike action by doctors. It was acknowledged that harm and benefits resulted from the strikes. Some grounds for moral justification of the strikes were discussed and found valid. However, comprehensive justification of the strikes was difficult, considering the professional and ethical obligations of doctors to society and to patients. In particular the withdrawal of emergency services made it difficult to find moral justification for the doctors‟ strikes. Failure to provide emergency services expunged any moral justification for strike action. / MT2017

In partial fulfilment of the degree of MSc Med (Bioethics & Health Law) Steve Biko Centre for Bioethics, Faculty of Health Sciences, University of the Witwatersrand. Johannesburg, December 2011 / ‘Whistle blowing’ means to blow a whistle calling attention to practices which an individual considers as immoral or illegal and harmful to the public. Some people think whistle blowing is a good or right act; others consider it wrong. There are numerous reports concerning blowing the whistle in scientific research. I place whistle blowing in the context of institutions, focusing on good clinical practice and Research Ethics Committees. Many research activities take place resulting in monetary and personal gain which may influence research conduct. I explore some issues in the development and organization of Research Ethics Committees, discuss the nature of whistle blowing and whistle blowers, and examine some whistle blowing incidents in scientific research. I conclude that although the function of Research Ethics Committees does not necessarily include mechanisms for whistle blowing, that this idea has merit and should be considered.

No description available.

In this thesis, I examine the extent to which moral enhancement, the biomedical alteration of an individual’s disposition to act according to good or bad motives, will in uence his capacity for selfgovernance. Following a discussion of the salient features of moral enhancement, a plausible list of conditions against which to measure the compatibility of moral enhancement with personal autonomy is expounded. e core elements of moral enhancement are weighed against these conditions in order to establish the ways in which these core elements are compatible with the conditions of personal autonomy. I argue that moral enhancement need not lead to a diminishment of personal autonomy, provided it serves merely as a mechanism to help an agent overcome the deterministic limitations that prevent him from bringing his lower-order desires into conformity with the higher-order desires that he has arrived at through independent, thoughtful deliberation.

Thesis (Ed.M.)--Boston University / PLEASE NOTE: Boston University Libraries did not receive an Authorization To Manage form for this thesis or dissertation. It is therefore not openly accessible, though it may be available by request. If you are the author or principal advisor of this work and would like to request open access for it, please contact us at open-help@bu.edu. Thank you. / 2031-01-01