Thesis (LLD (Public Law))--University of Stellenbosch, 2010. / ENGLISH ABSTRACT: The unique and intimate relationship that exists between a medical practitioner and his/her client is possibly one of the most important relationships that can come into being between any two people. This relationship is characterised and influenced by the qualities and attributes specific to the nature and historical development of medical care, as well as medical science in general. The doctor-patient relationship is also influenced by the social dynamics of a particular community, environmental factors, technological advances and the general social and commercial evolution of the human race. With regard to medical care and health service delivery, the doctor-patient relationship is furthermore vital to the quality of the care provided, as well as to the outcomes and relative success of the specific medical intervention or treatment. One of the distinct characteristics of the doctor-patient relationship is the power imbalance inherent in this relationship. The medical practitioner has expert knowledge and skill, while the patient finds himself or herself in an unusually dependent and vulnerable position. It is because of this important role that the doctor-patient relationship still plays in health service delivery today; the susceptibility of the relationship to a variety of influences, and the characteristic power imbalances inherent in this relationship, that a study of the doctor-patient relationship in South African medical- and health law is necessary. The characteristic power imbalances will be considered from a legal perspective in this dissertation. This study provides a comprehensive source of the doctor-patient relationship from a legal perspective. Where relevant, references are made to theories and principles from other disciplines, including sociology, economy and medical ethnomethodology. The prevalence and consequences of power imbalances in the doctor-patient relationship are identified and discussed with the aim of bringing these to the attention of both the legal fraternity, and medical practitioners. Specific problem areas are identified and solutions are offered, including the following: • The adverse consequences of power imbalances inherent in the doctor-patient relationship on the medical decision-making process are considered from various perspectives. With regard to these adverse consequences, the doctrine of informed consent is analysed and evaluated in great detail. • The influence of paternalistic notions in health service delivery; the business model of health service delivery and the effects of managed care and consumer-directed health care on the doctor-patient relationship and health service delivery in general are also analysed from a legal perspective, and specifically with regard to the power imbalances inherent in this relationship. • The role of autonomy, self-determination and dignity, as well as the principles of beneficence in medical practice, are reconsidered in an attempt to provide a solution for redressing the power imbalances inherent in the doctor-patient relationship. • The fiduciary nature of the doctor-patient relationship and the special role of trust in the relationship are emphasised throughout the dissertation as the focal point of departure in the doctor-patient relationship and the main constituent in any legal endeavor to redress the power imbalances inherent in it. / AFRIKAANS OPSOMMING: Die unieke en intieme verhouding wat bestaan tussen ‘n mediese praktisyn en ‘n pasiënt is wêreldwyd waarskynlik een van die belangrikste verhoudings wat tussen twee persone tot stand kan kom. Hierdie verhouding word gekenmerk en beïnvloed deur kwaliteite en eienskappe eie aan die besonderse aard en historiese ontwikkeling van gesondheidsorg, sowel as die mediese wetenskap in die algemeen. Die dokter-pasiënt verhouding word verder beïnvloed deur die sosiale dinamika van ‘n bepaalde gemeenskap, omgewingsfaktore, tegnologiese vooruitgang en die algemene sosiale en kommersiële ontwikkeling van die mensdom. Op die terrein van gesondheidsorg en mediese dienslewering is die dokter-pasiënt verhouding voorts ook sentraal tot die kwaliteit van die mediese sorg wat verskaf word, sowel as die uitkomste en relatiewe sukses van die spesifieke mediese behandeling. Een van die kenmerkende eienskappe van die dokter-pasiënt verhouding is die magswanbalans wat daar tussen dokter en pasiënt bestaan. Die mediese praktisyn beskik oor deskundige kennis en vaardighede, terwyl die pasiënt hom- of haarself in ‘n ongewone, afhanklike en kwesbare posisie bevind. Dit is dan veral weens die besondere rol wat hierdie verhouding steeds in hedendaagse gesondheidsorg speel, die beïnvloedbaarheid van hierdie verhouding deur ‘n verskeidenheid faktore, sowel as die kenmerkende magswanbalans inherent in die verhouding, dat ‘n ondersoek na die dokter-pasiënt verhouding in die Suid-Afrikaanse mediese reg noodsaaklik is. Hierdie kenmerkende magswanbalans sal vanuit ‘n regsperspektief verder in hierdie proefskrif ondersoek word. Hierdie studie bied ‘n omvattende bron van die dokter-pasiënt verhouding benader vanuit ‘n regsperspektief, terwyl verwysings na teorieë en beginsels van ander dissiplines soos die sosiologie, ekonomie en mediese etnometodologie ook waar nodig ingesluit word. Die voorkoms en gevolge van ‘n magswanbalans in die dokter-pasiënt verhouding word verder geïdentifiseer en bespreek ten einde dit onder die aandag te bring van beide regslui en medici. Spesifieke probleemareas wat geïdentifiseer is en die oplossings wat daarvoor aan die hand gedoen is sluit die volgende in: • Die nadelige gevolge van die bestaan van ‘n magswanbalans in die dokter-pasiënt verhouding op die mediese-besluitnemingsproses word bespreek vanuit verskillende persepktiewe. Met betrekking tot hierdie nadelige gevolge, word die leerstuk van ingeligte toestemming in besonder geanaliseer en geëvalueer. • Die invloed van ‘n paternalistiese benadering tot gesondheidsorg, die besigheids-model van gesondheidsorg, en die effek van bestuurde- en verbruikersgedrewe gesondheidsorg inisiatiewe op die dokter-pasiënt verhouding en die verskaffing van gesondheidsdienste in die algemeen word ook vanuit ‘n regsperspektief ge-analiseer. Spesifieke aandag word in dié verband gegee aan die invloede van hierdie benaderings en perspektiewe op die magswanbalans inherent aan die dokter-pasiënt verhouding. • Die besondere rol van autonomie, selfbeskikking en menswaardigheid, asook die beginsels van weldadigheid in gesondheidsorg, word heroorweeg in ‘n poging om ‘n meer gelyke distribusie van mag in die dokter-pasiënt verhouding te verseker. • Die fidusiêre aard van die dokter-pasiënt verhouding en die besondere rol wat vertroue in hierdie verhouding speel, word in hierdie proefskrif beklemtoon en word voorts as die basis van die dokter-pasiënt verhouding beskou. Vertroue, as ‘n kenmerk van die dokter-pasiënt verhouding, behoort ook die fokuspunt te wees van enige poging om die magswanbalans in die dokter-pasiënt verhouding aan te spreek.

Thesis (MPhil)--University of Stellenbosch, 2002. / ENGLISH ABSTRACT: The implementation of eugenic policies reached its peak during the zo" century when thousands of people with intellectual disabilities and other "undesirable qualities" were involuntary sterilized. Although most of the eugenic policies have been removed, countries such as South Africa, still make legally provision for the involuntary sterilization of people with intellectual disabilities. Torbjërn Tannsjë (1998) used the "argument from autonomy" to argue that involuntary sterilization practices are wrong because it involves compulsion. According to him, society should never interfere with people's reproductive choices and people should never be required to qualify for the right to have children. The aim of this assignment was to systematically assess the "argument from autonomy" as far as the policy of involuntary sterilization of people with intellectual disabilities is concerned. To this end, the concept of autonomy and the principle of respect for autonomy are discussed and applied to the intellectually disabled. It is argued that autonomy and respect for autonomy are useful concepts to apply to some people with intellectual disabilities. These individuals should not be automatically assumed to be incompetent, but their competence needs to be determined on an individual level, with reference to the complexity of the decision to be made. Special effort is needed from health care professionals to obtain (where possible) informed consent from people with intellectual disabilities. The application of the principle of respect for autonomy to matters of reproduction leads to the conclusion that people with severe to profound levels of disability, are unable to provide informed consent for sexual intercourse. Therefore some form of paternalistic protection is needed for these individuals. People with mild to moderate intellectual disabilities who are however competent to consent to sexual intercourse should never be prohibited from procreation by means of involuntary sterilization. State interference in matters of reproduction should be limited to interventions where (i) children are seriously harmed by parents and (ii) to protect those who are incompetent to consent to sexual interactions with others. Apart from these exceptions, the intellectually disabled is entitled to the same procreative rights as all other citizens. / AFRIKAANSE OPSOMMING: Die implementering van eugenetiese beleid het gedurende die 20 ste eeu 'n hoogtepunt bereik met die onwillekeurige sterilisering van duisende persone met intellektuele gestremdhede en ander "ongewensde kwaliteite". Alhoewel meeste van die eugenetiese wetgewing verwyder is, maak lande soos Suid-Afrika steeds wetlik voorsiening vir die onwillekeurige sterilisasie van persone met intellektuele gestremdhede. Torbjërn Tannsjo (1998) maak gebruik van die "outonomie argument" om te argumenteer dat onwillekeurige sterilisasie praktyke onaanvaarbaar is omdat dit dwang bevat. Hy voer aan dat die samelewing nooit in die reproduktiewe keuses van mense behoort in te meng nie en dat dit nooit vir mense nodig moet wees om vir ouerskap te kwalifiseer nie. Die doel van hierdie werkstuk was om sistematies die "outonomie argument" te analiseer ten opsigte van die beleid van die onwillekeurige sterilisasie van persone met intellektuele gestremdhede. Met hierdie doel voor oë word die konsep outonomie en die beginsel van respek vir outonomie bespreek en toegepas op die intellektueel gestremde persoon. Daar word aangevoer dat outonomie en respek vir outonomie nuttige beginsels is om in ag te neem in kwessies rakende intellektueel gestremdes. Hierdie individue moet nie outomaties as onbevoeg beskou word nie, maar hul bevoegdheid moet eerder op 'n individuele basis beoordeel word, inaggeneem die kompleksiteit van die besluit wat geneem moet word. Voorts word daar van gesondheidsorgpersoneel verwag om moeite te doen met die verkryging van oorwoê toestemming (waar moontlik) by persone met intellektuele gestremdhede. Die toepassing van die beginsel van respek vir outonomie op aspekte rakende reproduksie, lei tot die gevolgtrekking dat persone met ernstige intellektuele gestremdhede nie in staat is om toestemming tot seksuele omgang te verleen nie. Dus, is 'n vorm van paternalistiese beskerming in hierdie gevalle aangedui. Persone met intellektuele gestremdhede wat egter wel bevoeg is om toestemming tot seksuele omgang te verleen, moet nooit weerhou word van voortplanting deur middel van onwillekeurige sterilisering nie. Inmenging deur die staat in kwessies rakende reproduksie moet beperk word tot intervensies waar (i) kinders ernstige skade berokken word en (ii) die beskerming van persone wat onbevoeg is om toestemming tot seksuele interaksies met ander te verleen, benodig word. Afgesien hiervan, is die intellektuele gestremde persoon geregtig op dieselfde reproduktiewe regte as alle ander landsburgers.

Thesis (MPhil)--University of Stellenbosch, 2005. / ENGLISH ABSTRACT: Paarl, in the Western Cape, has been identified as one of the 15 national sites where antiretroviral treatment (ARVs) would be made available to people living with HIV/AIDS. Paarl Hospice initiated a support group for people to deal with this disease in 2003. Since February 2004 Paarl Hospice has been recruiting people from the surrounding informal settlements for ARVs. By means of participant observation I explored how HIV/AIDS-related disclosure experiences unfolded in places, spaces and events associated with the support group in the context of factors enabling and preventing people from accessing Hospice House. I did this by considering the insights drawn from an anthropological approach. I found the meanings of disclosure in the majority of studies to be limited and restricted. Available studies approached disclosure in a top-down fashion by regarding the definition of disclosure as the announcement of HIV-positivity at the time of diagnosis only. These studies have not considered social differences relating to disclosure neither did they focus on the actual process of disclosure. By means of a constructivist approach to grounded theory I seek to broaden the definition of disclosure to account for the range of ways in which disclosure practices take place. I found that disclosure could not be separated from the situational context in which it occurs and that it can only be understood in relation to the circumstances and relationships in which it takes place. In this study, disclosure was an ongoing process, situated somewhere between active, public announcement of an HIV-status and complete secrecy and somewhere between voluntary and involuntary revealing of the disease. / AFRIKAANSE OPSOMMING: Paarl in die Wes-Kaap is geïdentifiseer as een van die 15 nasionale areas waar antiretrovirale medikasie beskikbaar gestel sou word aan mense wat leef met MIV/VIGS. Paarl Hospice het gedurende 2003 ʼn ondersteuningsgroep geїnisieer om aan MIV/VIGS aandag te gee. Sedert Februarie 2004 is Paarl Hospice in die proses om mense te werf uit die omliggende informele behuisingsgebiede vir antiretrovirale behandeling. Met behulp van antropologiese insigte en deelnemende waarneming kon ek nagaan hoe verskillende maniere van MIV/VIGS-verwante bekendmaking ontvou in plekke, ruimtes en gebeurtenisse wat verband hou met die ondersteuningsgroep. MIV/VIGSverwante bekendmaking is ondersoek te midde van inhiberende en fasiliterende faktore wat mense verhoed of aanhelp om Paarl Hospice te besoek. Ek het bevind dat die definisie van bekendmaking in die meeste navorsing gebrekkig is. Beskikbare navorsing het bekendmaking volgens ‘n bo-na-onder-wyse benader as die openbare bekendmaking van ‘n MIV-status na afloop van diagnose alleenlik. Met behulp van ‘n konstruktiewe benadering van die begronde teorie het ek gepoog om die definisie van bekendmaking uit te bou om sodoende die verskeidenheid maniere waarop bekendmaking plaasvind te akkommodeer. Ek het vasgestel dat bekendmaking onlosmaakbaar deel is van die situasionele konteks waarin dit plaasvind en dat dit slegs begryp kan word in verband tot die verhoudings en omstandighede waarin dit plaasvind. In hierdie studie was bekendmaking ʼn voortdurende proses, gesitueer tussen aktiewe openbare bekendmaking en volledige geheimhouding van ʼn MIVstatus, asook tussen volkome vrywillige en onvrywillige bekendmaking van ʼn MIVstatus.

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

AIDS has had a negative impact on developing countries. Because most developing countries cannot afford the new antiretroviral drug therapies, it has been suggested that preventive vaccines might reduce the spread of the HIV/AIDS epidemic (Bloom, 1998). The clinical trials of AIDS vaccines do, however, present with complex ethical issues such as informed consent. Informed consent is primarily grounded on the Western principle of respect for individuals as autonomous agents. This may be at variance, however, with African societies' emphasis on the social embeddedness of the individual. The current study forms part of the HIVNET vaccine trials to be conducted in Hlabisa, in Northern Zululand, under the auspices of the South African Medical Research Council. The main aim of the study was to explore key informants' cultural conceptions of research and informed consent in order to facilitate community consultation and cultural sensitivity. Maximum variation sampling was used to select twenty-three key informants, who are in leadership positions within Hlabisa. An interview guide was used to facilitate narrative disclosure of cultural conceptions of research and informed consent. Perceptions of research, conceptions of the informed consent process, and projected motivations for why individuals agree to participate in studies were explored during interviews. Results suggest that members of the Hlabisa community have a limited understanding of the Western research process. Community education about research is therefore warranted. Informants indicated that community members would value the establishment of a relationship characterised by mutual respect for cultural differences between researchers and participants. This was perceived as likely to facilitate shared decision-making, and the reduction of the power differentials that exist between researchers and participants. While the involvement of key community leaders and family members was recommended by most informants, a few informants felt that participants could also make individual decisions about participation. The theoretical implications of the study are considered last. / Thesis (M.A.)-University of Natal, Pietermaritzburg, 1999.

In the history of public health vaccines have proven to be among the most effective disease prevention tools. It is clear that in the fight against HIV that new and powerful preventive technology such as a vaccine is badly needed. Ethically, however the processes of developing a vaccine against HIV have been distinctly different from that of any previous pharmaceutical products. HIV vaccine trials can be ethically complex for a number of reasons. In 2004 the HIV I AIDS Vaccine Ethics Group undertook a research initiative that aimed to collect data from various South African stake holders of HIV vaccine trials to ascertain what they perceived as the ethical challenges related to HIV vaccine trials. A quantitative content analysis on the data from 31 semistructured interviews revealed that the ethical issue listed spontaneously by most of the respondents was that of informed consent. Further probing and discussion on informed consent identified a number of sub issues which the respondents thought would pose important challenges to HIV vaccine trials in the South African context. This study undertook to do a more in-depth qualitative analysis of the data to ascertain whether the challenges and concerns the stakeholders have are consistent with or different to those already identified in the literature and ethical guidelines on informed consent in medical research. What variables may be impacting on the position stakeholders take was also of interest. Results indicated that many concerns relating to the substantive and procedural elements of informed consent were consistent with those debated in the literature. These issues related to first person consent, the voluntariness of participants' consent, practicing cultural sensitivity, dealing with language issues, promoting and assessing understanding of material disclosed, issues around the vulnerability of .. participants, children and adolescents' capacity to consent and the role of the media. More specific to the South African context, stakeholders were concerned about the legal framework under which the trials take place, the general lack of education and training about HIV vaccine trials, a lack of communication and coordination between stakeholder groups, and the historical influences of apartheid on black South African participants' capacity to consent. The main variables that appeared to impact on the position stakeholders took related to the role the stakeholders play within the trials, the philosophical position underpinning their ethical viewpoints, stakeholders' understanding of vulnerability and capacity to consent, and how they view the universality or relativity of ethical issues. / Thesis (M.A.)-University of KwaZulu-Natal, Pietermaritzburg, 2008.

Introduction: Stigma associated with HIV/AIDS creates a barrier to prevention, care and treatment of HIV/AIDS. It further restricts PLWHA from learning about their status, disclosing their status, adopting safe behaviour and accessing services such as antiretroviral treatment. Disclosure of HIV status and a reduction in stigma may contribute to the decrease in new HIV cases. Purpose: The purpose of the study was to develop a community-based framework that would encourage people living with HIV/AIDS to disclose their HIV status and reduce the stigma associated with the disease. Method: This study used the action research method to explore the experiences of stigma and disclosure of HIV status and to develop a community based framework with PLWHA who encouraged disclosure and promoted the reduction of stigma in a community-based setting. The research setting was Bhambayi, an informal settlement in the district of Inanda. Non-probability purposive sampling was used. In-depth interviews with PLWHA that had disclosed their HIV status and focus group discussions with family members, adult children and community members were conducted. Findings: The data was analyzed manually and the following categories and subcategories emerged. The categories were experience of disclosure, stigmatizing reactions, lifestyle changes after disclosure and supports to reduce stigma. Some of the sub-categories were ‘opens out the illness’, gossiping and pointing fingers, discrimination against PLWHA by family and community, changes in relationships, community awareness and formation of support groups. The findings revealed that PLWHA that had disclosed their HIV status had changed their lifestyles. Recommendations were made on the need for nurses to develop community engagement projects and establish partnerships in order to reach out to communities regarding HIV/AIDS. Incorporate HIV/AIDS stigma and discrimination into the current nurses’ curriculum. The need for research is expressed on the evaluation of the framework and conducting similar research in larger communities. Conclusion: PLWHA who had disclosed their HIV-status shared their experience of being HIV-positive and encouraged other people to get tested. The community-based framework to facilitate disclosure and reduce stigma among PLWHA can be operationalised in other informal community-settings. / Theses (Ph.D.)-University of KwaZulu-Natal, Durban, 2010.

The therapeutic privilege is a defence in terms of which a doctor may withhold information from a patient if disclosure of such information could harm the patient. This study explores the defence of therapeutic privilege and provides a critical evaluation. A comparative investigation is undertaken, while arguments springing from a variety of disciplines are also incorporated. A number of submissions are made for limiting the ambit of the defence. The main submission is that the therapeutic privilege should comply with all the requirements of the defence of necessity. In addition, it should contain some of the safeguards afforded to the patient by the requirements of the defence of negotiorum gestio so that therapeutic privilege is out of the question if medical treatment is administered against the patient's will, or the doctor has reason to believe (or knows) that the patient will refuse to undergo an intended intervention once properly informed. / Jurisprudence / L.L.M. (Jurisprudence)

Indiana University-Purdue University Indianapolis (IUPUI) / Children's and adolescents' capacity to provide valid informed consent is one of the key ethical concerns in pediatric research, and the focus of this project. The original contribution to knowledge is the advancement of both conceptual and empirical bioethical approaches to research with vulnerable populations. First, a review of adolescent vulnerability is presented to highlight the complex interplay between capacity and other forms of vulnerability. This review is offered as an interdisciplinary analysis to better understand why the study of vulnerable populations is critical to the ethical advancement of clinical research. Results from this analysis suggest the need for enhanced screening techniques as well as the utilization of specialized staff to identify and reduce the impact of different forms of vulnerability. The primary tasks of the empirical portion of the dissertation were to: (1) Adapt a validated adult competency assessment tool for clinical research, the MacArthur Competency Assessment Tool for Clinical Research, to assess the capacity of children and adolescents to consent to clinical research; (2) Identify predictors that impact children and adolescents’ capacity to provide consent to clinical research; and (3) assess differences and similarities in capacity between healthy and chronically ill children and adolescents. Overall results suggest adolescent capacity to consent to research was similar to adults, and most strongly associated with their family's socioeconomic status as well as their level of health literacy. These findings contrast starkly with the age-based criterion for providing consent currently utilized in assent and consent determinations. These findings also provide insights into ways to ethically involve youth in complex biomedical research.

Indiana University-Purdue University Indianapolis (IUPUI) / Living donors have contributed about 6,000 kidneys per year in the past 10 years, but more than 100,000 individuals are still waiting for a kidney transplant. Living kidney donors undergo a major surgical procedure without direct medical benefit to themselves, but comprehensive follow-up information on living donors’ health is unfortunately limited. Expert recommendations suggest capturing clinical information beyond traditional sources to improve surveillance of co-morbid conditions from living kidney donors. Currently the United Network for Organ Sharing is responsible for collecting and reporting follow-up data for all living donors from U.S. transplant centers. Under policy implemented in February of 2013, transplant centers must submit follow-up date for two years after donation, but current processes often yield to incomplete and untimely reporting. This dissertation uses a statewide Health Information Exchange as a new clinical data source to 1) retrospectively identify a cohort of living kidney donors, 2) understand their follow-up care patterns, and 3) observe selected clinical outcomes including hypertension, diabetes and post-donation renal function.