MSc (Med) (Bioethics and Health Law), Faculty of Health Sciences, University of the Witwatersrand / Parental Consent or Refusal to Consent to HIV Testing in Children The acquired immune deficiency syndrome (AIDS) continues to represent the greatest infectious threat to humans of all time. It is estimated that some 33 million people are currently infected with the causative organism, the human immunodeficiency virus (HIV). More than 2 million of these are children. The AIDS epidemic now has its epicenter in sub-Saharan Africa where 75% of deaths occur. The treatment of AIDS with antiretroviral drugs (ARVs) has changed the outcome from inevitably fatal over months to years, to a chronic but manageable condition. Adherence to treatment is essential for maintaining good health and avoiding the development of resistance. Young children with HIV infection usually obtain the virus from their infected mother at, or about the time of birth or via breast milk. Prevention of mother to child infection (PMTCT) is possible through the use of ARVs and this has resulted in a dramatic decrease in infected children in the developed world. Poor provision and uptake of PMTCT in the developing world means that many children are still being infected. In these environments, over 60% of the children who die are infected. Treating these children with ARVs will usually prevent death and return the child to a good quality of life in the family. It is necessary to test the child for infection before embarking on life-long complex treatment and this is done by testing blood or saliva for the virus or antibodies to the virus. A positive test in the child is usually a proxy for a positive test in the mother and this obviously has profound implications for her life. In all infants suspected of infection, a test is advised. In the Rahima Moosa Mother & Child Hospital about 10-15% of mothers refuse testing for their infants. These children are therefore denied the opportunity for life-saving treatment. This essay discusses the reasons why mothers may refuse HIV testing for their infants and explores the possible ethical choices and responses of healthcare workers to this refusal.

BACKGROUND: Neurodevelopment and growth are primary concerns when neonates are born extremely premature (between 23 and 28 weeks gestation). The focus of the PENUT Trial is to administer erythropoietin (Epo) to extremely preterm infants and to study the potential neuroprotective effects of Epo. The PENUT ethics survey was designed to provide study investigators with parental feedback regarding the consent process for the PENUT Trial and to improve the consent process for future research trials. OBJECTIVES: The objectives of this research thesis are to learn (1) what factors are important to parents who are approached for informed consent to include their infants in a research study and (2) how parents may be influenced by demographic and social factors. The hypothesis is that parents approached prenatally may be more likely to consider enrolling their infants into the PENUT Trial. METHODS: All parents approached to enroll their eligible infants into the PENUT Trial (both consenting and non-consenting parents) were eligible to complete the ethics survey. While completing the survey, parents (1) responded to statements about factors involved in their decision-making process, (2) rated their overall experiences in being asked to join the PENUT Trial, (3) described what ultimately led them to enroll or not to enroll their infants in the PENUT Trial, and (4) responded to demographic questions. RESULTS: Thirty mothers of infants eligible for the PENUT Trial (22 consenting, 8 non-consenting) were approached by a research study coordinator to complete the survey. Of the 22 consenting mothers, 10 were approached prenatally, and 12 were approached postnatally for the PENUT Trial. However, of the 8 non-consenting mothers, only 1 was approached prenatally, whereas 7 were approached postnatally for the PENUT Trial. The ethics survey was completed by 20 of 22 consenting mothers and 6 of 8 non-consenting mothers. The average rating among mothers of their overall experiences with the consenting process for the PENUT Trial was 3.77 (2.75 among non-consenters, 4.00 among consenters) on a scale of 1 (= poor) to 5 (= excellent). Thirteen mothers preferred to be approached for the PENUT Trial by their baby’s neonatologist (6 preferred their OB/GYN, 5 preferred another doctor, 1 preferred a study coordinator, and 10 had no preference). In addition, 14 mothers preferred that the person approaching them was involved in the research trial (5 preferred person not involved, 2 preferred to be approached by those involved and not involved, and 9 had no preference). Lastly, 18 mothers preferred to be approached prenatally (5 postnatally, and 7 had no preference). CONCLUSIONS: Preliminary findings from the PENUT Trial ethics survey support the hypothesis that mothers prefer to be approached prenatally when considering enrollment of their newborn infants into the PENUT Trial. Survey responses also suggest that during the consent process mothers prefer to be approached by either (1) two neonatologists, with one responsible for the baby’s care and the other responsible for the research trial, or (2) one neonatologist who is involved in both the baby’s care and the research trial.

Submitted by Luanna Matias (lua_matias@yahoo.com.br) on 2015-03-24T15:24:16Z No. of bitstreams: 2 Dissertação - Adriana Assis Carvalho - 2011.pdf: 1042672 bytes, checksum: 082e2b55f6dc68915badc36fa48641ad (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Approved for entry into archive by Luanna Matias (lua_matias@yahoo.com.br) on 2015-03-24T15:29:45Z (GMT) No. of bitstreams: 2 Dissertação - Adriana Assis Carvalho - 2011.pdf: 1042672 bytes, checksum: 082e2b55f6dc68915badc36fa48641ad (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Made available in DSpace on 2015-03-24T15:29:45Z (GMT). No. of bitstreams: 2 Dissertação - Adriana Assis Carvalho - 2011.pdf: 1042672 bytes, checksum: 082e2b55f6dc68915badc36fa48641ad (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) Previous issue date: 2011-04-20 / The young child is able to cooperate with dental treatment when it does not involve invasive procedures, otherwise, it becomes necessary to apply a behavioral intervention. Advanced methods of behavior management, such as passive restraint, sedation and general anesthesia, have been proposed for this attendance. In literature, the effectiveness of these techniques is similar, but the acceptance of each of the methods by parents is varied, being necessary to obtain written consent before the application of this technique indicated. Based on these observations, this study aimed to understand the mothers' perceptions about the advanced techniques of behavior management used in pediatric dentistry and how mothers behave before the randomization process when it comes to the method of driving behavior to be applied to your child's dental rehabilitation. This qualitative research, we interviewed mothers of children under three years of age who would receive dental treatment under one of the techniques, using a semi-structured and voice recording. After interviews, they were transcribed in Microsoft Word file. We conducted its analysis by content analysis, after carefully reading the files. Among concerns of mothers were created four technical thematic categories: "prior knowledge of protective stabilization, sedation and general anesthesia," "understanding mother on the techniques," "maternal perception on techniques" and "choice of technique for the mother ". Most mothers did not know the management techniques used in pediatric dentistry. However, after reading the consent form, the majority demonstrated understanding of the techniques. The protective stabilization was considered a safe technique, however, it was the most rejected, because they believe that it causes distress to the child. In relation to general anesthesia, although the fear of the procedure was considered, it was the most accepted due to dental treatment be done in one session. The advantage of sedation for the mothers was related to its amnesic effect, and that their children would be calmer. In relation to informed consent and randomization process was checked by a misunderstanding of the mothers on the stages of research and found some mixed feelings permeated vulnerability (powerlessness, fear and pressure) and optimism (faith in God) since the objective was to completion of dental treatment for their children. / A criança pequena é capaz de colaborar com o tratamento dentário quando este não envolve procedimentos invasivos, caso contrário, torna-se necessário aplicar alguma intervenção comportamental. Técnicas avançadas de condução do comportamento tais como estabilização protetora, sedação e anestesia geral, têm sido propostas durante esse atendimento. Na literatura, a eficácia dessas técnicas é variável, entretanto, a aceitação de cada uma delas por parte dos pais é pouco investigada. Baseado nessas observações, este trabalho teve como objetivo compreender a percepção materna sobre as técnicas avançadas de condução do comportamento utilizadas na odontopediatria e como as mães se comportam diante do processo de randomização quando se trata do método de condução do comportamento a ser aplicado em seu filho na reabilitação dentária. Nesta pesquisa qualitativa, entrevistamos mães de crianças menores de três anos de idade que iriam receber tratamento odontológico sob uma das técnicas, por meio de um roteiro semi-estruturado e gravação de voz. Após as entrevistas, transcrevemos as respostas em arquivo Microsoft Word. Procedemos a análise por meio de análise de conteúdo, modalidade temática, após leitura exaustiva dos arquivos. Destacamos dentre as falas das mães referentes à observação das técnicas quatro categorias temáticas: ―conhecimento prévio da estabilização protetora, sedação e anestesia geral‖, ―compreensão materna sobre as técnicas‖, ―percepção materna sobre as técnicas‖ e ―escolha da técnica pela mãe‖. Observamos que a maioria das mães não conhecia as técnicas de condução do comportamento utilizadas na odontopediatria. Entretanto, após a leitura do Termo de Consentimento, a maioria demonstrou compreendê-las. As mães consideraram a estabilização protetora uma técnica segura, no entanto, foi a mais rejeitada, por acreditarem que cause sofrimento à criança. A opinião das mães sobre a anestesia geral foi que, apesar de temerem o procedimento, aceitavam-no em função de possibilitar a realização do tratamento odontológico em sessão única. A vantagem da sedação para as mães estava relacionada a seu efeito amnésico e à chance de seus filhos ficarem mais calmos. Em relação ao consentimento informado e o processo de randomização, verificamos uma má compreensão por parte das mães sobre as fases da pesquisa e encontramos diferentes sentimentos permeados de vulnerabilidade (impotência, medo e pressão) e otimismo (fé em Deus), já que o objetivo maior de sua participação na pesquisa era a realização e conclusão do tratamento odontológico de seus filhos.

Thesis (MA. (African Languages)) --University of Limpopo, 2013 / Tsenguluso iyi yo bvisela khagala matshimbidzele a mbingano ya Vhavenḓa zwi tshi kwama zwine mbingano iyi ya vha zwone, u dzhenelela ha vhabebi, maambisele, u lugiselwa ha mbingano, lumalo u swika kha u vhinga kana u vhingwa. Yo dovha ya bvisela khagala khaedu dzo livhanaho na iyi mbingano ṋamusi dzine dza vha u sa dzhenelela ha vhabebi kha mbingano dza vhana vhavho. U ḓiṱoḓela vhafunwa ha vhaswa ano maḓuvha, zwiitisi zwa u sa malwa ha vhafumakadzi khathihi na u sengulusa uri ndi ngani vhanna ano maḓuvha vha si tsha mala vhafumakadzi vhanzhi.

The entire dissertation/thesis text is included in the research.pdf file; the official abstract appears in the short.pdf file (which also appears in the research.pdf); a non-technical general description, or public abstract, appears in the public.pdf file. Title from PDF of title page (University of Missouri--Columbia, viewed on April 1, 2010). Vita. Thesis advisor: Lawrence H. Ganong. "May 2008" Includes bibliographical references

Submitted by EDWIRGES ELAINE RODRIGUES null (edwirges_elaine@yahoo.com.br) on 2017-06-05T22:38:20Z No. of bitstreams: 1 Dissertação Edwirges Elaine Rodrigues.pdf: 1166112 bytes, checksum: 50bb801bae0a247e4b4b9954a611e568 (MD5) / Approved for entry into archive by Luiz Galeffi (luizgaleffi@gmail.com) on 2017-06-06T17:07:46Z (GMT) No. of bitstreams: 1 rodrigues_ee_me_fran.pdf: 1166112 bytes, checksum: 50bb801bae0a247e4b4b9954a611e568 (MD5) / Made available in DSpace on 2017-06-06T17:07:46Z (GMT). No. of bitstreams: 1 rodrigues_ee_me_fran.pdf: 1166112 bytes, checksum: 50bb801bae0a247e4b4b9954a611e568 (MD5) Previous issue date: 2017-05-09 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) / O presente trabalho tem por base o estudo do instituto da guarda compartilhada de filhos à luz do sistema normativo brasileiro vigente, averiguando sua compatibilidade com o princípio do melhor interesse da criança e do adolescente, como forma de proporcionar uma responsabilização conjunta entre os pais na criação e educação dos filhos menores de idade e não emancipados. Em razão das transformações enfrentadas pela sociedade, torna-se cada vez mais corriqueiro a ruptura dos vínculos conjugais, muitas vezes, abarcada por conflitos envolvendo mágoas e ressentimentos entre os cônjuges; entretanto, vale destacar que a separação refere-se apenas à conjugalidade e jamais à parentalidade. Assim sendo, a autoridade parental, que diz respeito aos direitos e deveres inerentes aos genitores em relação aos filhos, permanecerá com ambos os pais mesmo que algum destes não resida junto à prole. Diante destas situações, faz-se necessária a aplicação da guarda judicial que poderá ser unilateral, ou seja, é designado apenas um dos pais como guardião, que se responsabilizará pelo cotidiano dos filhos, residindo com eles; ou a guarda compartilhada, que consiste na responsabilização conjunta dos genitores para com seus filhos, mantendo a residência destes no lar que melhor lhes convier. Existem dificuldades na aplicação da guarda compartilhada, em especial, no que se refere à obrigatoriedade desta, após o advento da lei n. 13.058/2014. Para que ocorra a correta aplicabilidade da guarda conjunta é imperioso um mínimo de respeito e comunicação adequada entre os guardiões, pois, todas as decisões à respeito da prole deverão ser tomadas em conjunto. Ademais, as modificações conduzidas pela legislação provocaram diversidade de opiniões entre a doutrina e a jurisprudência, ao mencionar que o tempo de convívio entre pais e filhos deverá ser equilibrado, remetendo a uma confusão com a guarda alternada, em que ocorre a divisão da guarda física dos filhos, considerada perniciosa à criança/adolescente. Destarte, requer-se uma análise aprofundada do instituto da guarda compartilhada, buscando a sua aplicabilidade e efetividade, através da implementação e execução de políticas públicas na busca do consenso parental, tais como a mediação familiar, que procura transformar o conflito existente entre o casal conjugal, propiciando assim, o restabelecimento do diálogo entre eles. No mais, outros institutos também são merecedores de maior atenção, como a transmediação, a coordenação de parentalidade e as oficinas de parentalidade. Ressaltando que o princípio da proteção e melhor interesse dos filhos sempre deverá ser colocado em primeiro lugar. / The present study is based on the study of the shared guardianship of children in the light of the brazilian normative system in force, ascertaining its compatibility with the principle of the best interest of the child and the adolescent, as a way of providing a joint responsibility between the parents in the creation and education of minor and non-emancipated children. Due to the transformations faced by society, it is becoming increasingly common to break marital ties, often involving conflicts involving grievances and resentments between the spouses; however, it is worth noting that the separation refers only to conjugality and never to parenthood. Thus, parental authority, which concerns the rights and duties inherent to the parents in relation to the children, will remain with both parents even if one of them does not reside with the offspring. In view of these situations, it is necessary to apply the judicial custody that may be unilateral, that is, only one of the parents is designated as guardian, who will be responsible for the daily life of the children, residing with them; Or shared custody, which consists of the joint responsibility of the parents to their children, keeping their residence in the home that suits them best. There are difficulties in the application of shared custody, especially with regard to its obligation, after the advent of law n. 13.058/2014. In order for the correct application of joint custody to occur, a minimum of respect and proper communication among the guardians is imperative, since all decisions, regarding offspring must be taken together. In addition, the changes made by the legislation provoked a diversity of opinions between the doctrine and the jurisprudence, when mentioning that the time of conviviality between parents and children should be balanced, referring to a confusion with the alternating custody, in which division of the physical guard of children, considered harmful to the child/teenager. Therefore, an in-depth analysis of the shared custody institute is required, seeking its applicability and effectiveness, through the implementation and execution of public policies in the search for parental consent, such as family mediation, which seeks to transform the existing conflict between the couple marriage, thus facilitating the reestablishment of dialogue between them. No more, other institutes also deserve more attention, such as transmediation, parenting coordination, and parenting workshops. Emphasizing that the principle of protection and best interests of children should always be put first.

Cette recherche s’intéresse à un sujet d’actualité portant sur la vie privée des mineurs en ligne, plus particulièrement sur la protection des données personnelles. Depuis l’avènement des nouvelles technologies de l’information et des communications (NTIC) et la venue du web 2.0, la protection des données personnelles demeure question d’actualité en plus d’être fort complexe. Cette question demeure encore plus criante lorsqu’il s’agit de mineurs. La présente recherche s’intéresse d’abord à l’utilisation d’Internet par les mineurs, à la notion de vulnérabilité du mineur et de l’insuffisance des règles actuelles. Elle s’intéresse également à la distinction conceptuelle entre « mineur » et « enfant » avant de s’arrêter plus longuement aux principales formes d’infractions qui portent atteinte à la vie privée et à l’intégrité des mineurs. Plus loin dans ce mémoire, on s’intéresse aux dispositions législatives et réglementaires au Canada, aux États-Unis et au sein de l’Union européenne. Dans la dernière partie on montre les différences significatives entre le Canada, les États-Unis et l’Union européenne. Dans la conclusion de ce mémoire, nous revenons sur les faits saillants de cette recherche comparative en insistant sur le fait qu’il est complexe de protéger les données personnelles des mineurs et qu’il existe des différences importantes dans les législations et les règlements en vigueur sur le plan national et international. / This research study addresses a current concern regarding the privacy of minors online, more specifically the protection of personal data. Since the emergence of new information and communication technologies (NICT) and the introduction of Web 2.0, the protection of personal data remains a relevant and very complex issue. This issue is even more critical when it comes to minors. This research study first looks at Internet use by minors, the notion of a minor person’s vulnerability and the limitations of the current rules. It also examines the conceptual distinction between "minor" and "child" before focusing on the main aspect of violation of a minor's privacy and integrity. Later in this master’s thesis, the legislative and regulatory provisions in Canada, the United States and the European Union are examined. The final section highlights the significant differences between Canada, the United States and the European Union. In the conclusion for this dissertation, we will look back at the highlights of this comparative study, emphasizing that the task of protecting the personal data of minors is complex and that there are significant disparities in the laws and regulations in force at the national and international levels.

The purpose and aims of this qualitative descriptive study were to describe how past experiences with research (including communication, information, values and support) may contribute to research fatigue among youth and parents of youth with HIV, CF, and T1D. Eighteen parents and youth were purposively recruited from outpatient subspecialty clinics at a major academic medical center. They took part in qualitative interviews, completed a demographics form, and the Decisional Conflict Scale. Youth participants also completed the Erikson Psychosocial Stage Inventory. Two major themes emerged: blurred lines and hope for the future. Research fatigue was not found in this sample. Results point to challenges with informed consent in settings where research and clinical care are integrated, and suggest that protective factors allow for continued participation without excess burden on youth and parents. Strategies to minimize research fatigue and support engagement in research are offered.

The study sought to determine, first, what the rules of the Hananwa family law were and, second, whether those rules were compatible with the Constitution. First, it documented the rules of the official family law. The problem that the study countenanced is that customary law is "corrupted, inauthentic and lacking authority".1 Second, it established and documented the rules of the Hananwa family law. The problem that the study countenanced in respect of Hananwa law was that it was difficult to ascertain the content of the rules of the "living" Hananwa law in order to determine their compatibility with the provisions of the Bill of Rights. Moreover, the traditional Hananwa community is inegalitarian and patriarchal. Section 9 of the Constitution provides that everyone is equal before the law and enjoys equal and full protection and benefit of the law. The study found that the Hananwas still observe their system of customary law. However, there are visible changes. For instance, nowadays the spousal consent is a validity requirement for all customary marriages. A parent or legal guardian must consent to a customary marriage of a minor. The individual spouses, not their families, are parties to their own customary marriages. African women enjoy equal status. This development is consistent with section 9 of the Constitution read with section 6 of the Recognition of Customary Marriages Act 120 of 1998. According to the Constitutional Court, in MM v MN and Another 2013 4 SA 415 (CC), the first wife must consent to her husband's customary marriage to another woman in addition to her customary marriage to him. However, some rules of the Hananwa law do not comply with the provisions of the Bill of Rights. For instance, according to the Hananwa law, extramarital children do not enjoy equal inheritance rights and maintenance rights yet. This discrimination is inconsistent with the constitutional right to equality and the provisions of the Reform of Customary Laws of Succession and Regulations of Related Matters Act 11 of 2009.The Constitution puts common law and customary law on a par. However, the courts have often replaced customary law dispute resolution rules with the common law rules. For instance, the Constitutional Court in Bhe and Others v Magistrate, Khayelitsha and Others; Shibi v Sithole and South African Human Rights Commission and Another v President of the Republic of South Africa and Another 2005 1 SA 580 (CC) and the High Court in Maluleke v Minister of Home Affairs 2008 JDR 0426 (W) substituted the rules of common law for those of customary law in order to resolve customary law disputes. The legislature could not be outdone. A meticulous study of the Recognition of Customary Marriages Act 120 of 1998 and the Reform of Customary Laws of Succession and Regulations of Related Matters Act 11 of 2009 reveals that their provisions almost appropriately reflect the common law marriage and intestate succession rules respectively. The Recognition of Customary Marriages Act has, furthermore, adopted the provisions of the Divorce Act of 1979. Section 28 of the Constitution read with the Children's Act 38 of 2005 has generally substituted the fundamental human rights for the unequal rights provided by the customary law of parent and child. The Maintenance Act 99 of 1998 has substituted the communal form of maintenance under customary law. / Public, Constitutional, & International Law / LLD (International and Constitutional Law)

The study sought to determine, first, what the rules of the Hananwa family law were and, second, whether those rules were compatible with the Constitution. First, it documented the rules of the official family law. The problem that the study countenanced is that customary law is "corrupted, inauthentic and lacking authority".1 Second, it established and documented the rules of the Hananwa family law. The problem that the study countenanced in respect of Hananwa law was that it was difficult to ascertain the content of the rules of the "living" Hananwa law in order to determine their compatibility with the provisions of the Bill of Rights. Moreover, the traditional Hananwa community is inegalitarian and patriarchal. Section 9 of the Constitution provides that everyone is equal before the law and enjoys equal and full protection and benefit of the law. The study found that the Hananwas still observe their system of customary law. However, there are visible changes. For instance, nowadays the spousal consent is a validity requirement for all customary marriages. A parent or legal guardian must consent to a customary marriage of a minor. The individual spouses, not their families, are parties to their own customary marriages. African women enjoy equal status. This development is consistent with section 9 of the Constitution read with section 6 of the Recognition of Customary Marriages Act 120 of 1998. According to the Constitutional Court, in MM v MN and Another 2013 4 SA 415 (CC), the first wife must consent to her husband's customary marriage to another woman in addition to her customary marriage to him. However, some rules of the Hananwa law do not comply with the provisions of the Bill of Rights. For instance, according to the Hananwa law, extramarital children do not enjoy equal inheritance rights and maintenance rights yet. This discrimination is inconsistent with the constitutional right to equality and the provisions of the Reform of Customary Laws of Succession and Regulations of Related Matters Act 11 of 2009.The Constitution puts common law and customary law on a par. However, the courts have often replaced customary law dispute resolution rules with the common law rules. For instance, the Constitutional Court in Bhe and Others v Magistrate, Khayelitsha and Others; Shibi v Sithole and South African Human Rights Commission and Another v President of the Republic of South Africa and Another 2005 1 SA 580 (CC) and the High Court in Maluleke v Minister of Home Affairs 2008 JDR 0426 (W) substituted the rules of common law for those of customary law in order to resolve customary law disputes. The legislature could not be outdone. A meticulous study of the Recognition of Customary Marriages Act 120 of 1998 and the Reform of Customary Laws of Succession and Regulations of Related Matters Act 11 of 2009 reveals that their provisions almost appropriately reflect the common law marriage and intestate succession rules respectively. The Recognition of Customary Marriages Act has, furthermore, adopted the provisions of the Divorce Act of 1979. Section 28 of the Constitution read with the Children's Act 38 of 2005 has generally substituted the fundamental human rights for the unequal rights provided by the customary law of parent and child. The Maintenance Act 99 of 1998 has substituted the communal form of maintenance under customary law. / Public, Constitutional, and International Law / LLD (International and Constitutional Law)