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.

This thesis aims to contribute to ethical discussions on the production of photography in different humanitarian contexts, and in circumstances where it is facilitated by non-governmental and international non-governmental organisations (I/NGOs). Humanitarian photography is often reproduced and circulated in various forms by different actors, highlighting the need for research on the actions, decisions, and interactions that influence how these images are produced. An extensive literature review captures the many ethical challenges surrounding humanitarian photography and provides an overview of related standards. A conceptual framework is then built around informed consent as an accountability mechanism, with consideration for certain relational and situational factors that influence the quality and effectiveness of the process of obtaining consent. Emphasising photographer and organisational accountability, an analysis of how photographers apply the concept of informed consent and its potential as an accountability mechanism is explored through the case study of embedded photographers in search and rescue (SAR) I/NGO operations in the Mediterranean Sea.     Four semi-structured in-depth interviews were completed with photographers involved in SAR I/NGO missions in the Mediterranean from 2015 to 2021. The interviews suggest that a continuous and deliberate process of individual, organisational, and collaborative self-regulation unfolds throughout a mission, largely through verbal communication and body language, in an effort to obtain consent to take or use images of people who have been rescued. Use of formal means such as written consent forms are only rarely used. Photographs during the rescues were generally taken without prior consent, and photographers’ ability to obtain meaningful subsequent informed consent was easily compromised due to the unpredictable conditions during SAR operations and the variation across I/NGO-photographer partnerships. These findings support the need for further dialogue in this context to ensure that practices and processes related to the production of humanitarian photography, such as obtaining informed consent, are compatible with humanitarian principles, respect the rights and dignity of people affected by crisis, and foster greater accountability.

Sexual abuse of children occurs at a very high rate and most of the victims are young children who have never been taught about the possibility of being abused. Victims of abuse are not equipped with appropriate knowledge and vocabulary to enable them to explain properly when they experience abuse. Acquisition of a vocabulary and understanding of the concepts of sexuality would assist children in recognizing, resisting and reporting sexual abuse. The young age at which abuse occurs makes the study at primary school level important and relevant. There is little literature on how child sexual abuse can be identified, addressed and handled by schools or what unique role the school should play in the management of child sexual abuse cases. Educators are in a position to identify sexually abused children because of their close and ongoing contact with school-going children. Therefore, young children place a great deal of trust in their teachers and look to them for protection when they feel unsafe. Teachers are trained to observe changes in the appearance and progress of individual children. Therefore, they can also assist in uncovering and reacting appropriately to disclosures of abuse. The study was conducted in poor, disadvantaged, rural primary schools in a part of the North West Province. There is a limited access to social work services in rural areas and therefore, educators are considered to be appropriate people to educate children about sexual abuse issues because children spend most of their time at school. There is a relationship between educators, parents and children which creates a proper channel of communicating information about sexual abuse of children. That is, educators are in a position not only to educate but also to reinforce what children have learnt at home. Educators' role have been limited in the identification and dealing with sexual abuse cases and therefore, there is a need to empower them with appropriate knowledge and skills to enable them to handle sexual abuse cases at school level successfully. / Psychology / M. A. (Psychology)

This dissertation examines the legal position relating to the participation of children in research, especially in HIV preventive clinical research in South Africa. HIV/AIDS presents a real threat to humanity and particularly to the welfare of children. The participation of children in this type of trials is therefore vital. Children, as vulnerable participants, must also be protected from harm resulting from research. The study also considers the nature of HIV preventive clinical research, pointing to the inconsistencies in the legislation governing children’s participation in HIV preventive vaccine trials. The dissertation concludes that the question of the participation of children in HIV preventive clinical research poses many challenges, as the position in the South African law and relevant ethical guidelines are inconsistent and contradictory. The study recommends in the final instance that the relevant statutory provisions and ethical guidelines be harmonised in order to clear up the inconsistencies. / Jurisprudence / LL.M. (Legal Aspects of HIV/AIDS)

The purpose of this thesis is to develop a comprehensive process for identifying and addressing primarily constitutional, medico-legal and liability issues, and in addition ethical, social and scientific issues related to the psychiatric and psychology professions in South Africa. In fulfilling this purpose, a comprehensive search is conducted of relevant historical, ethical, philosophical and clinical aspects pertaining to psychiatry and psychology, as well as an evaluation of the current juridical framework regarding the legal liability of the psychiatrist and psychologist balanced against the constitutional rights of the mentally disordered patient in South Africa. Recommendations are made for the establishment of any new controls needed to mitigate and prevent the exposure of mentally disordered patients, further attempting to provide specific remedies to adapt the current juridical framework in South Africa. The examination is conducted within the framework of the South African and United Kingdom's legal systems. Focus is placed on aspects of medical law, human rights law (as envisaged in the Bill of Rights in the Constitution of the Republic of South Africa, 1996), criminal law and the law of delict and, to a lesser extent, administrative law and the law of evidence. / Law / LL.D.

The purpose of this study is to investigate the right to confidentiality in the context of HIV/AIDS through an interdisciplinary lens. This study indicates that whilst confidentiality is important and should be preserved in order to protect persons living with HIV/AIDS against stigmatisation, discrimination and victimisation, this should be balanced by other equally important interests, such as the protection of public health and individual third parties who may be affected by the intentional or negligent infection of others with HIV. As the consideration of the legal issues relating to confidentiality and privacy cannot be divorced from the social context in which HIV/AIDS plays out in South African communities, the study will examine, amongst others, the victimisation, discrimination and stigmatisation experienced by persons living with HIV/AIDS, followed by a critical exploration of the present legal and ethical framework governing privacy and confidentiality, including medical confidentiality, as well as the duty to disclose a positive HIV-status, in the context of HIV/AIDS. Possible limitations on the right to privacy in this context are also examined, which include, amongst others, a consideration of making HIV/AIDS notifiable diseases in South Africa. The study suggests that it is imperative that legal interventions aimed at curbing the spread of HIV will need to be mindful of the unique social, cultural and economic forces that impact on the duty to disclose a positive HIV-status to partners and other affected third parties. Insights gained from philosophical theories relating to Africanism, individualism, communitarianism and utilitarianism are valuable tools in facilitating a clearer understanding of relevant social and cultural factors that keep South African society locked in the present stalemate with regard to the disclosure of HIV status. / Public, Constitutional, & International law / LLD

近年來，病人自主權意識高漲，醫療糾紛頻傳，每個醫師無不戒慎恐懼，而醫療爭議之處理模式與醫師專門職業之道德責任都受到社會高度的檢視及廣泛的討論。事實上，醫學的進步需要依賴不斷地創新與大膽地試驗研究，因此人體試驗相關的問題也受到大眾的關注。 由於人體試驗所面對的是複雜而變化多端的情境，所以參與人體試驗之受試者將會面對甚而遭到危險或傷害。我國人體試驗的相關法規，多散置於醫療法、醫師法、藥事法、藥品優良臨床試驗準則、藥品優良臨床試驗規範等，除了無整體之法規範外，且多為行政法令，在法律位階上均較低，加上衛生署主管機關無法落實對試驗過程中之管理與監控，因此參與人體試驗之受試者往往會受到損害而無法得到應有的保障。因為人體試驗的特殊性與常規醫療是不同的，如果僅由既有的傳統醫療糾紛處理方式，如醫療契約於受試者的關係、侵權行為於違反保護他人法律的標準、醫療倫理不傷害原則於人體試驗規範等，這些恐怕都是必須的，但是仍嫌不足。 本文參考國外人體試驗規範包括紐倫堡法則、赫爾辛基宣言、美國貝爾蒙特報告、美國聯邦法規、CIOMS國際生物醫學研究人體試驗倫理準則、國際醫藥法規協和會之優良人體臨床試驗準則等等，然後針對個別議題如受試者保護之告知後同意，受試者權益之醫療契約關係及侵權行為責任，受試者受傷害之損害賠償責任，作一整理分析與檢討，並進一步配合我國現行法律制度與社會倫理規範做出建議。 本文共分為七章，分別為「序論」、「人體試驗」、「人體試驗告知後同意法則」、「國外人體試驗之民事責任」、「我國人體試驗之民事責任」、「人體試驗之賠償責任及機制」及「結論」。 / In recent years, patients’ consciousness of self-determination has raised and many medical disputes occurred; doctors feel discomfort and developed the high intensity of self-defense. The solution of medical malpractice and professional liability of doctors have became the major public issues and received many discussions. We are quite sure that the medical progress is based on innovative and intensive clinical study on human subjects. Under this background, the topics on human subject research have been attracted more attention than ever. Since the situations in human research are complex and variable. If relative clinical standards and legal protections are not adequately provided, the human subjects involved in clinical researches may face many risks and even injured. In Taiwan, we don’t have a systemic regulations on human subject research, all regulations are distributed in different code, act, proceeding, and agreement. Furthermore, the government does not have enough resource and manpower to monitor or inspect the processes of human research, the issues of protection of human rights and benefits of testee has raised serious concern. The human subject research is not exactly the same as the clinical medical treatment, it’s impossible for legislators or institutions to regulate research through traditional medical regulations such as medical ethics doctor-involved informed consent, medical agreement (contract), tort laws, and compensation for injury. In this thesis, firstly, I reviewed the most important publications related to human subject research include Nuremberg Code, Declaration of Helsinki, USA’s Belmont Report and Code of Federal Regulations, CIOMS International Ethical Guidelines for Biomedical Research Involving Human Subjects, and ICH-GCP; secondly, focus on each specific topics especially the value of informed consent, the importance of medical agreement, the liabilities of torts and the policy of compensation for injury. Finally, I’ll make my comments and suggestions to the health care authorities to update and implement new regulating policies to protect human rights of subjects involved in clinical researches. My thesis is restricted to discuss the impact of civil liability on human subjects research focus on drug clinical trial and divided into seven chapters as follows: “Introduction”, “Human subject research”, “Principles of informed consent”, “International liability of civil law on human subject research”, “Liability of Taiwan civil law on human subject research”, “Policy of compensation for injured human research subject” and “Conclusion”.

Une femme à risque d’un accouchement prématuré vit un enjeu de santé très éprouvant et stressant ; elle sera souvent hospitalisée pour recevoir des traitements médicaux visant à prolonger la grossesse et améliorer le pronostic du bébé. Dans ce contexte, une consultation avec un néonatalogiste est demandée. Plusieurs associations professionnelles médicales ont émis des lignes directrices sur cette consultation, insistant sur le besoin d’informer les parents au sujet des complications potentielles de la prématurité pour leur enfant. Ces recommandations s’inspirent du point de vue médical, et très peu d’études ont examiné la perspective, les attentes et les besoins des parents à risque d’un accouchement prématuré. Ce projet de thèse a pour objectif de proposer un modèle de relation médecin-patient informé de la perspective maternelle de la consultation anténatale, pour développer une approche clinique répondant à leurs besoins. Afin d’examiner cette problématique de façon complète, un travail constant de va-et-vient a été effectué entre la recension de données empiriques et une réflexion normative bioéthique féministe. Un projet de recherche empirique a d’abord permis d’explorer les attentes et le vécu de ces femmes. Les participantes espéraient recevoir plus que de l’information sur les complications de la prématurité. Elles souhaitaient que le néonatologiste soit attentif à leur situation particulière et qu’il développe une relation de confiance avec elles, leur permettant d’explorer leurs futurs rôles de mères et les encourageant à formuler leurs propres questions. Le cadre théorique féministe d’autonomie relationnelle a ensuite permis de proposer une approche de soin qui sache répondre aux besoins identifiés par les patientes, tout en adressant des enjeux de pouvoir intrinsèques à la clinique, qui influencent la santé et l’autonomie de ces femmes. Cette approche insiste sur l’importance de la relation de soin en clinique, contrastant avec un modèle encourageant une vision réductrice de l’autonomie, dans laquelle un simple transfert de données scientifiques serait équivalent au respect de la norme médicolégale du consentement éclairé. Ce modèle relationnel propose des actions concrètes et pratiques, encourageant les cliniciens à entrer en relation avec chaque patiente et à considérer l’influence qu’ils exercent sur l’autonomie relationnelle de leurs patientes. / Women at risk of preterm labour experience a highly stressful situation for which they are often hospitalised to receive the medical care required to delay their baby’s birth or to improve his outcome. Professional medical associations have published guidelines encouraging consultations with a neonatologist in these contexts. These emphasize informing parents about prematurity’s potential complications and outcomes. However, they are based on expert medical opinions, and little is known about parents’ perspectives of the antenatal consultation for preterm labour. This thesis proposes to elaborate a clinical model of a physician-patient relationship, grounded in mothers’ experiences and expectations from the antenatal consultation for preterm labour. In order to offer a comprehensive analysis of this clinical and ethical issue, both empirical data and a normative feminist bioethical framework were used. An empirical quantitative research project was first conducted to explore women’s experiences and their expectations regarding the antenatal consultation. Participants hoped to receive more than information from the antenatal consultation for preterm labour. Indeed, they hoped the neonatologist would strive to understand their unique and distinctive situations. They wanted the physician to develop trusting relationships, in which they would be enabled to ask questions important to them and in which many topics could be discussed – such as their roles as mothers of a premature baby. A feminist theory of relational autonomy was then used to examine this data. An approach to care responsive to women’s experiences is suggested, which considers not only their individual needs, but which is also critical of the many power imbalances inherent to the clinical setting that influence patients’ health and autonomy. This approach emphasizes the importance of relationships in the physician-patient encounter; it offers a striking contrast to consultation models that endorse a minimal conception of patient autonomy, in which the simple transfer of medical knowledge and data is believed to uphold the legal doctrine of informed consent. This relational model suggests practical and tangible means for physicians to engage in relationships with their patients and to consider the influence they have on their patients’ relational autonomy.

Cette thèse de caractère pluridisciplinaire traite des progrès de la biologie de la reproduction dans le domaine de l’infertilité face à la Convention internationale des droits de l’enfant (CIDE) des Nation-unies. La première partie montre que, en France, il y a conciliation entre l’intérêt supérieur de l’enfant et l’assistance médicale à la procréation, encadrée par le triptyque des lois de bioéthique de 1994. La deuxième partie traite des dérives de ces techniques pratiquées à des fins sociétales et non médicales. Des parents intentionnels désireux d’un « enfant à tout prix », puisque la loi n° 2013-404 du 17 mai 2013 ouvrant le mariage aux couples de même sexe n’a pas « ouvert » le droit à l’accès de ces techniques de reproduction assistée, se rendent au cours d’un « tourisme procréatif » dans un pays où la maternité de substitution ou gestation pour autrui (GPA) est licite et ont un enfant grâce à une mère de substitution, qui assure la gestation de l’embryon, puis du foetus via une fécondation in vitro. Mais lors du retour en France de l’enfant, eu égard aux articles 16-7 et 16-9 du code civil, se pose le problème de la filiation de l’enfant sans compter sur les risques de la maternité de substitution, d’où l’incompatibilité des techniques de reproduction assistée à des fins sociétales avec la Convention internationale des droits de l’enfant, l’adage latin "mater semper certa est" étant la garantie de l’intérêt supérieur de l’enfant. / This thesis has a plurisdisciplinary approach and deals with the improvements of biology of reproduction in the field of infertility regarding the International Convention on the Rights of the Child of the United Nations (ICRCUN). The first part shows, that in France, there is conciliation between the best interests of the child and the medical assistance to procreation, legalised by the triptych of the bioethics law of 1994. The second part deals with the drifts of those practices used for societal ends and not medical. Intended parents willing to have “a child at all costs”, as the law n° 2013-404 of May 17, 2013 allowing the marriage to couples of the same sex has not “allowed” the right to have access to thoses technics of assisted reproduction, do “procreative tourism” and go to a country in which the surrogate maternity or gestational surrogacy (GS) is legal and have a child thanks to surrogate mother who ensures the gestation of the embryo, and the foetus through an in vitro fertilization (IVF). However, back to France, according to articles 16-7 and 16-9 of the Civil Code, the issue of the filiation of the child arises, without counting on the risks of the surrogate maternity, hence the incompatibility of the methods of assisted reproduction to societal purposes with the International on Rights of the child, the Latin proverb "mater semper certa est" being the guarantee of the best interest of the child.

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