This thesis develops the proper role of quality of life assessments in situations of newborn euthanasia. Initially spurred by the Groningen Protocol of the Netherlands, which was a protocol outlining the criteria for non-voluntary newborn euthanasia of seriously ill or impaired newborns, this paper considers the practice of newborn euthanasia within the context of the current decision making frameworks already in place in this country. Specifically, this paper relies on informed consent and the best interest model as well as the generally accepted respect for parental authority in medical decision making. In light of these current standards of practice, this paper argues that in order for newborn euthanasia to be ethically permissible, it must be split into two primary decision making processes. The first is the decision to provide euthanasia as a medical option, which rests solely with physicians. The second is the decision to actually euthanize the child, which rests with the parents or guardian of the child. Both of these decisions are dependent upon assessments of the newborns current and future quality of life. The decision to provide newborn euthanasia must be based on a set of components of quality of life that are sufficiently universal so as to allow them to be applied to any newborn and to maintain a reasonable degree of uniformity of assessments between physicians in the same case and in like cases. This thesis identifies five components of a minimally decent quality of life that physicians should use to determine whether to offer newborn euthanasia as a medical option. Once this decision has been made, parents take on the responsibility of considering whether the childs current and future quality of life justify newborn euthanasia. This decision is understood in the context of the broad deference that the medical community gives to parents in their treatment decisions made for their children. The physicians decision to provide euthanasia as an option is meant to inform the parents decision but is in no way meant to obligate compliance.

It is estimated that over 400,000 embryos are currently cryopreserved in the United States, and many of these will never be used by their creators. Although many options exist for the disposition of unwanted embryos, such as donation to research or destruction, one option, embryo donation to another individual for implantation, has met with resistance from some religious institutions such as the Catholic Church, and remains largely unregulated in American law. This practice, which offers the possibility of life for the embryo and the possibility of parenthood for the recipient, should be morally acceptable in the Catholic tradition and properly regulated by legislatures. This paper argues that the current contract law approach to embryo donation is not sufficient to ensure permanence of the agreement, and the practice is not intrinsically unethical based on principles of Catholic bioethics. This thesis proposes that reconceptualizing the practice of embryo donation as embryo adoption can resolve both the legal insufficiencies and the Catholic ethical concerns. Approaching embryo donation within an adoption framework definitively establishes the allocation of parental rights and provides them with judicial support. Viewing the practice as a form of adoption instead of a reproductive technology also avoids a violation of Catholic moral principles and establishes embryo donation as an ethical option for those wishing to adopt abandoned embryos.

This project analyzes the concept of vulnerability and the way that it is applied as a label in the context of human subject research. Vulnerability as a concept represents concern for an individual's or group's acute inability to protect her or their own interests. In the research context, this concept is applied as a label across large populations in an attempt to signify a need for added protections when these populations are enrolled in research because of the heightened susceptibility of these groups to harms, wrongs, or exploitation. Although there are legitimate reasons for extending heightened protections to particular individuals, the way the concept is currently applied in the research context fails to protect all those who are in need of protections, and furthermore, causes harm or wrongs individuals and those populations so-termed 'vulnerable'. The label is too broad, and tends to extend protections to those who are not in need of them to their potential detriment. Furthermore, the label fails to draw attention to the manner in which these groups are vulnerable and thus appropriate and adequate protections may not be offered. The label of 'vulnerability' can also carry with it a stigma, which may be internalized by members of these vulnerable populations. Instead of conceptualizing vulnerability as an individual's or group's inability to protect her or their own interests due to some feature of those so labeled, vulnerability should be conceptualized in a way that does not obscure the relational features of the concept — i.e., that the type of vulnerability of interest in research frequently is the result of relationships of power, and research protections should adopt a framework based on such a conceptualization. The focus ought to be on those features or situational characteristics that are likely to override an individual's assertion of her own interests. This approach would avoid the situating of the inability to protect one's own interests within the individual, and would allow for a practical enactment of protections which serve everyone equally when they are in situations of experiencing vulnerability in relation to a particular other or institution.

Thesis (M.T.)--Regent College, 2007. / Includes bibliographical references.

The Problem I will be addressing is, quite simply, "What role, if any, can philosophers legitimately play in biomedical ethics?" When one considers the recent backlash against ethical theory; philosophers' own dissatisfaction with their relationship with biomedicine; and the depth and urgency of the pertinent moral issues, it is nearly impossible to be unmoved by the enormity of the challenge. But will philosophy meet the challenge? Many of those who are familiar with the current state of biomedical ethics are inclined to be doubtful. The thesis I shall advance and defend is that this doubt is well-founded if we suppose that philosophers continue to apply their theoretical resources in biomedicine in the same manner as has usually been done. Unless philosophers dramatically change the nature of their approach in biomedical ethics, they will continue to face frustration and to be regarded as ineffectual. The role they must adopt requires them to work with many others (nurses, patients, doctors, lawyers, etc.) as equals, bringing their skills and talents to bear along with the skills and talents of non-philosophers. Without a strong inter-dependence between philosophers and non-philosophers, biomedical ethics will not prosper, nor evolve into the kind of tool that is direly needed in the health sciences. In order to defend the thesis I am advancing, I will survey some of the literature that has dealt with the problems facing philosophers in the clinic in recent years. The case against biomedical ethics (and, in particular, normative ethical theory) will be explored to reveal the content of the criticisms and their force. Following some discussion of these criticisms, pursued in order to discover elements of a new approach to the role philosophers can legitimately play in biomedical ethics, I will attempt to build a constructive alternative from these positive fragments. My conclusion, very generally, is that philosophers' skills and resources permit them to function best in close cooperation with others. I will rely on an account of a public forum (comprised of doctors, patients, theologians, nurses, etc.) to illustrate the kind of role philosophers could most effectively and legitimately pursue. Because of the nature of their activities, philosophers would, for example, often play an important role in isolating and defending significant value questions. A strong sense of inter-dependence would develop as physicians and the forum interacted. Physicians, who must be active in their roles as moral agents, would primarily be concerned with developing rules, guidelines, etc. for practical cases. Physicans would be assisted by a small group of non-physicians to ensure that important social goals are taken into account. The forum would act as an external critic of these rules, both prospectively and retro-actively. The success of the forum would provide biomedical ethics with important practical input that should be used for its growth and development. / Arts, Faculty of / Philosophy, Department of / Graduate

Includes bibliographical references.

Introduction: Genomics research raises a number of ethical, legal and social issues (ELSI), one of which is the concept of benefit sharing. While benefits and benefit sharing are difficult to discuss because of questions on what needs to be shared, with whom and by whom, it cannot be pushed to the side-lines especially as it is a way of promoting justice in health research and of ensuring that research is of social value to study communities. In this study, we explored the perceptions and expectations of African genomics scientists on the benefits of genomics research to Africa. Method: This was a qualitative study and we adopted a grounded theory approach. I conducted 17 in-depth interviews with genomics researchers in Africa to explore their perceptions of benefits and benefit sharing in genomics research in Africa. Transcripts of interviews were imported into QSR-NVivo 10 for thematic analysis. A thematic analysis of informed consent documents used in 13 genomics studies in Africa was also done to explore how research benefits are documented. Results: Research collaboration, research capacity building and access to genomics medicine were perceived to be the main benefits of African genomics science (AGS). In terms of research collaboration, there were perceived fears of exploitation of African researchers and research participants, and the non-sustainability of AGS. To address the problem of exploitation, African researchers expressed the need for fairness in AGS through transparency and equity in research collaborations, enhancing research oversight, African ownership and leadership of AGS, community engagement and research capacity building. In terms of genomics medicine, African genomics researchers perceived that AGS would have an impact on healthcare in Africa in the area of diagnosis, pharmacogenomics and public health. However, there were concerns around access to genomics medicine by African populations, lack of capacity for genomics medicine in Africa and the need for AGS to focus on Africa's healthcare priorities. There was however limited awareness of the concept of benefit sharing among African genomics researchers though they perceived it is as an important concept for AGS. Interviewees suggested that benefit sharing could be in the form of research capacity building, feedback of study findings, science education, community projects and the sharing of profits.

Includes bibliographical references (leaves 93-97). / This paper stems from discussion of real life problems experienced at a local state hospital, and that have been presented to the University of Cape Town Bioethics Centre. These problems will be outlined from their social, medical and ethical perspectives. The dilemmas relating to confidentiality and disclosure of HIV status will be illustrated by empirical research data conducted in an HIV treatment unit, and with reference to the broad literature on this subject. It will be argued that confidentiality issues are poorly understood by healthcare professionals and their patients. In addition, and related to this lack of understanding, is a failure to construct and implement policies to protect specific confidentiality needs in the healthcare environment The practical problem of patient disclosure of HIV status will be explored using data generated from the author’s own practice. A review of the debate regarding confidentiality in the healthcare context will be provided, with reference to the literature on the subject. Guidelines for drafting a facility specific confidentiality policy will be provided, along with a draft policy for use as a template in this situation.

The HIV / AIDS epidemic is devastating Africa. The continent lacks the material resources to treat infected persons or to support those affected by the epidemic. One great resource in Africa is the cohesive strength of families. Because of a fear of stigma, HIV infected persons tend not to disclose their diagnosis to their families. This non-disclosure perpetuates stigma, because ordinary people do not discover that their own family may be affected by the epidemic. Non-disclosure also results in the loss of specific family support to infected individuals and the loss of general family support as a national resource. The standard method of taking informed consent prior to HIV testing of pregnant mothers has the effect of enhancing non-disclosure, because of its inherent focus on the patient as an isolated, autonomous decision maker. This dissertation advances the thesis that an alteration in the process of informed consent, to involve the family in deliberation prior to consent, will facilitate disclosure of an HIV-positive diagnosis to the family. Disclosure will have the positive effects firstly of giving the mother access to the emotional support of her family and secondly of serving to educate the family, and through the family society as a whole, that ordinary, virtuous women can be infected with HIV.

INTRODUCTION: Advances in genetic and genomic research have introduced new challenges in obtaining informed consent for research in low and middle-income settings. However, there are only few studies that have explored challenges in obtaining informed consent in genetic and genomic research in Africa and none in South Africa. To start filling this gap, we conducted an empirical study to investigate the efficacy of informed consent procedures for a genomic study on Rheumatic Heart Disease (RHDGen) at the University of Cape Town in South Africa. The main aim of the study was to understand the ethical challenges in obtaining informed consent in the RHDGen study. METHODS: We used a qualitative study methodology involving in-depth interviews and participant observations. Our research participants were RHDGen cases and controls as well as research staff involved in the recruitment of RHDGen research participants. In total, we conducted 32 in-depth interviews with RHDGen research participants, 2 in-depth interviews with research staff and 57 direct observations of the consent procedures of RHDGen research participants. The in-depth interviews were conducted in English, audio-recorded and transcribed verbatim. All the data were analysed using thematic content analysis. The study was conducted in 3 sites within Cape Town, South Africa, and these sites were the Groote Schuur Hospital in Observatory, the Vanguard Community Health Centre in Bonteheuwel and the Heideveld Community in the Cape Flats.