Submitted to the Faculty of Health Sciences, University of Witwatersrand, Johannesburg, in partial fulfillment of the requirements for the degree Master of Science in Medicine (Bioethics and Health Law). Johannesburg, 2017 / Given the enormous gap between supply and demand for donor organs in South Africa, this research report seeks to answer the question ‘which system of organ donation is the most ethically and practically suitable for South Africa?’ I begin with an analysis of the varying aspects of the country that influence organ donation rates. Following this, opt-in, opt-out and mandated choice are all critically evaluated in terms of their suitability as organ procurement systems in the country. The four principles of autonomy, non-maleficence, beneficence and justice (theory of Principlism) are used to assess each system. In conclusion, a hybrid system of opt-in and mandated choice is argued to be the most ethically and practically appropriate system for South Africa to improve organ donation rates. As would be required for any improvement of the system, effort needs to be made to increase awareness on the topic of organ donation throughout South Africa. / MT2017

<p>There is a shortage of organs available for donation worldwide. There have been several campaigns to try to increase the numbers of registrered donors. The topic has been brought to the forefront but more work is still needed to distribute information to the public.</p><p>The aim of this literature review was to examine what influences people in their decision to donate their organs or not, and what role nurses play in providing the most current information available. The study found that there was several different reasons given for not donating their organs. A great number of people were convinced that their religion was against organ donation. The level of knowledge about organ donation and ethnoculural background were major factors when making the decision to register as an organ donar. Only through making more information available in different languages, educating healthcare workers about culural and religions differences can the numbers of registrated donors increase.</p>

There is a shortage of organs available for donation worldwide. There have been several campaigns to try to increase the numbers of registrered donors. The topic has been brought to the forefront but more work is still needed to distribute information to the public. The aim of this literature review was to examine what influences people in their decision to donate their organs or not, and what role nurses play in providing the most current information available. The study found that there was several different reasons given for not donating their organs. A great number of people were convinced that their religion was against organ donation. The level of knowledge about organ donation and ethnoculural background were major factors when making the decision to register as an organ donar. Only through making more information available in different languages, educating healthcare workers about culural and religions differences can the numbers of registrated donors increase.

Objective. To evaluate organ donation (OD) policy, appropriate comparisons between different OD programs are required. The objective of this research was to investigate alternative methods of measuring national rates of OD using publicly available data and examine the implications of using each method as a measure of performance. / Method. We used 7 measures to calculate deceased OD rates, based on 7 different denominators. Data were collected from OD organizations and the World Health Organization. OD rates for each measure were calculated for 10 countries for the years 2001--2004. Relative rates were calculated using Spain as the standard. / Results. We found variations in relative rates across the proposed measures. Regardless of the measure used Spain excelled. / Conclusion. If the purpose of the OD rate is to identify the top performer internationally, it may not matter which measure is used providing this is done with an understanding of its limitations.

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Consent from the family of a possible donor directly influences organ donation rates. The process of obtaining consent, however, is often addressed during a time in which the family’s ability to make decisions is affected by the psychological trauma related to the sudden and unexpected reality of death. This research study implemented a qualitative interpretive descriptive design to gain insight into the way family members of brain-dead patients try make sense of the conflict they experience while faced with a compelling decision about organ donation. Data was collected during in-depth, unstructured, individual interviews with family members (n=8), representing the diverse population of the Western Cape Province in South Africa. Digitally voice-recorded interviews were transcribed, followed by thematic data analysis. Seven common themes emanated from the data, which clarified the family’s decisional conflict regarding organ donating to a certain degree. Although the findings of the study resonate with several similar international studies, it also brings new insight to the role played by the so-called key decision maker(s) in the family. The key decision maker carries the greatest weight in the family’s final decision, and must acquire an informed understanding of both brain death and organ donation. Understanding the role of the key decision maker may well be crucial to the supporting transplant coordinator during the time of decision-making. Recommendations were formulated for education, policy, practice and further research. / MCur, North-West University, Potchefstroom Campus, 2015

Consent from the family of a possible donor directly influences organ donation rates. The process of obtaining consent, however, is often addressed during a time in which the family’s ability to make decisions is affected by the psychological trauma related to the sudden and unexpected reality of death. This research study implemented a qualitative interpretive descriptive design to gain insight into the way family members of brain-dead patients try make sense of the conflict they experience while faced with a compelling decision about organ donation. Data was collected during in-depth, unstructured, individual interviews with family members (n=8), representing the diverse population of the Western Cape Province in South Africa. Digitally voice-recorded interviews were transcribed, followed by thematic data analysis. Seven common themes emanated from the data, which clarified the family’s decisional conflict regarding organ donating to a certain degree. Although the findings of the study resonate with several similar international studies, it also brings new insight to the role played by the so-called key decision maker(s) in the family. The key decision maker carries the greatest weight in the family’s final decision, and must acquire an informed understanding of both brain death and organ donation. Understanding the role of the key decision maker may well be crucial to the supporting transplant coordinator during the time of decision-making. Recommendations were formulated for education, policy, practice and further research. / MCur, North-West University, Potchefstroom Campus, 2015

Thesis (M.S.N.)--Marshall University, 2003. / Title from document title page. Document formatted into pages; contains iv, 56 p. Includes bibliographical references (p. 43-45).

Most South Africans die without their organs being harvested for transplantation. In a country where motor vehicle accidents or violent crime are often the cause of death, presumably leaving most of the organs fit for transplantation, it is astounding that the offer of organs doesn’t meet the demand. The aim of this dissertation is to find a practical solution for the current shortage of transplantable human organs in South Africa. This is achieved by critically discussing current South African legislation regulating organ transplantation, considering alternative organ procurement methods, as well as the impact that bioethics and the Constitution might have on the success of an organ procurement system. This dissertation is concluded with the realisation that although the current organ procurement method needs to be changed to required request, relieving the organ shortage will only be achieved by combining several proposed legislative changes, including, but not limited to, creating a national donor as well as a national waiting list; launching an educational campaign; limiting the role of relatives; and expanding the definition of death for the purpose of organ harvesting. KEY TERMS: organ procurement methods; National Health Act; Constitution; organ shortage; bioethics; autonomy; dignity; required request. / Dissertation (LLM)--University of Pretoria, 2013. / gm2014 / Public Law / unrestricted

INTRODUÇÃO: A obtenção de órgãos para pesquisa é essencial para o estudo da neurobiologia da doença mental. Na comunidade científica internacional há uma demanda crescente para a disponibilização de tecido cerebral humano para estudos sobre a neurobiologia das doenças neuropsiquiátricas, com grande interesse no uso desses tecidos para a investigação dos processos biológicos básicos associados às doenças mentais. No cenário atual, entretanto, biobancos de tecido cerebral dedicados às doenças psiquiátricas são extremamente escassos. OBJETIVO: Descrever a frequência de doação de tecido cerebral para pesquisa por familiares de pessoas que cometeram suicídio MÉTODO: Foram incluídas solicitações para doação de encéfalo a familiares de indivíduos que cometeram suicídio com idade entre 18 a 60 anos cuja necropsia foi realizada entre março de 2014 e fevereiro de 2016. Foram excluídos casos com lesões no tecido cerebral devido a trauma na hora da morte. RESULTADOS: Tivemos acesso a 56 casos de suicídio. Destes, 24 estavam dentre os critérios de exclusão do projeto. Foram excluídos do estudo 11 casos por falta de responsáveis para assinar o Termo de Consentimento Livre e Esclarecido (TCLE). Finalmente, dos 21 remanescentes, 9 responsáveis autorizaram a doação de tecido cerebral, em sete casos de fragmento de córtex e dois do encéfalo. CONCLUSÕES: As doações de tecido cerebral para pesquisa são indispensáveis para a elucidação de causas biológicas, e há uma escassez de material biológico disponível para a investigação do sistema nervoso central em doenças neuropsiquiátricas. Neste estudo demostra-se que a doação para pesquisa em nosso meio é possível, com uma proporção de consentimento similar àquela relatada em doenças neurodegenerativas. / INTRODUCTION: Obtaining organs for research is essential to study the neurobiology of mental illness. The international scientific community there is a growing demand for the availability of human brain tissue for studies of the neurobiology of neuropsychiatric diseases, with great interest in the use of these tissues for investigation of basic biological processes associated with mental illness. In the current scenario, however, brain tissue biobanks dedicated to psychiatric disorders are extremely scarce. OBJECTIVES: To describe the frequency of brain tissue donation for research purposes by families of individuals that committed suicide. METHODS: All the requests for brain tissue donation for a brain biorepository made to the families of individuals aged 18-60 years that committed suicide between March 2014 and February 2016 were included. Cases presenting with brain damage due to acute trauma were excluded. RESULTS: Fifty-six suicide cases were reported. 24 fulfilled the exclusion criteria; 11 were excluded because no next of kin was found to sign the informed consent. Finally, of the 21 remaining cases, brain tissue donation was authorized in 9 - – 7 fragments of brain tissue and 2 the entire organ. CONCLUSIONS: The donation of brain tissue for research is essential for the elucidation of the neurobiology of neuropsychiatric illness. In the present study, we report the feasibility of brain tissue donation for research purposes. Moreover, that the rates of this sort of donation is similar to the rates reported for neurodegenerative diseases.