Research in resource-limited, multi-cultural contexts raises complex ethical concerns. The term ‘over-researched community’ (ORC) has increasingly been raised as an ethical concern and potential barrier to community participation in research. However, the term lacks conceptual clarity and is omitted from established ethical guidelines and academic literature. In light of the concern being raised in relation to vitally needed HIV prevention research in developing countries, a critical exploration of the meaning of the notion was undertaken. Guided by Emanuel et al.’s (2004) eight principles for ethically sound research in developing countries, this study explored the relevance and meaning of the terms ‘over-research’ and ‘over-researched community’ through a thorough review of ethical guidance documents and analysis of key stakeholder perspectives. In-depth interviews were conducted with 23 resource persons from research ethics committees, community advisory boards and research organisations in South Africa. Interviews were transcribed and translated where necessary and data were analysed thematically. ‘Over-research’ was found to reflect a conglomeration of ethical concerns, often being used as a proxy for existing ethical concepts. ‘Over-research’ might be interpreted to mean exploitation. However, exploitation itself could mean a range of different things. ‘Over-research’ seemed fundamentally linked to disparate positions and perspectives between different stakeholders in the research interaction, arising from challenges in inter-stakeholder relationships. Analysis of the data suggests that using the term may lead to an obscured understanding of real or perceived ethical transgressions, making it difficult to intervene to address the underlying concerns. It is recommended that the term not be used in research ethics discourse. However, because it represents other legitimate concerns, it should not be dismissed without careful exploration. / Thesis (M.A.)-University of KwaZulu-Natal, Pietermaritzburg, 2010.

Background. An inherent challenge in HIV prevention studies is making sure that trial participants understand the information. This study explored trial participants’ perceptions and comprehension of the informed consent process in a pre-exposure HIV prevention study. Method. Face-to-face in-depth interviews, using a study guide, were held with twenty interviewees purposively selected from ex-participants of an HIV prevention study. Audio-recorded data were transcribed, translated, coded using NVivo 8, and analysed according to themes. Results. The participants were all women between the ages of 18 and 40. Participants felt that key information had been given during the informed consent process. Most felt that the process of obtaining informed consent was rushed with some participants citing a need for more time to make a decision regarding participation. Some participants felt pressured to sign consent forms. Some found it difficult to ask questions and mixed feelings existed on male partner involvement in the decision-making process. Conclusions: Participants experienced the consent process as rushed and most only fully comprehended study concepts with time. Their concerns necessitate the reassessment of informed consent processes in a developing world setting. / Thesis (M.Soc.Sc.)-University of KwaZulu-Natal, Pietermaritzburg, 2012.

Numerous ethical guidelines are referred to when medical research is conducted on human participants. These guidelines include the Nuremberg Code, the Declaration of Helsinki, and the International Ethical Guidelines for Biomedical Research Involving Human Subjects. From a Western viewpoint, these guidelines may seem like well-reasoned, universally applicable codes for conducting medical research on human subjects. Some of the guidelines, however, merely impose Western values on developing countries without giving adequate consideration to their worldviews. I explore the applicability of current codes and guidelines of ethics on medical research with human subjects to the Zulu of South Africa and the Kikuyu of Kenya. Through a study of African traditional religions and philosophy and the community mindset that flows out of them, I have gained insight into the limitations of current universal codes when applied to traditional Kikuyu and Zulu communities.

This study's problem concerned the conflict between the ethical desirability of giving participants relevant information about themselves versus the current practice of withholding sociometric data. Group counseling was selected to provide a relative basis for comparison of the effects of structured sociometric feedback (SSF). This study's ultimate purpose was to gather empirical evidence concerning the appropriateness and safety of conveying sociometric data to participants of sociometric studies.

No description available.

Thesis (MA)--Stellenbosch University, 2008. / ENGLISH ABSTRACT: New genetic technologies (e.g. stem-cell research, gene-therapies and cloning) raise some of the most enigmatic moral problems in the field of bioethics. My aim in this thesis is to explore the philosophical and ethical significance of the idea of an “ethics of responsibility” (as, particularly, developed in the work of Hans Jonas, Zygmunt Bauman and Emmanuel Levinas) for moral reflection on these problems. “Ethics of responsibility” is a new approach to ethics that represents an alternative to both rule morality (where moral action is identified with the application of rules) and utilitarianism (where moral action is identified with establishing the best consequences for the most people). Rule morality has the serious shortcoming of being unable to deal with real and actual moral dilemmas, and of being unclear as to which rule applies in which situation. Utilitarianism has the serious shortcoming of often being way too counter-intuitive: deeds that we normally find morally abhorrent, such a lying, stealing and even torturing can, within the utilitarian calculus, sometimes be justified. The notion of an ethics of responsibility has been promoted by the mentioned authors both to counter the simplistic idea that a rule exists in terms of which every moral action can be determined, but also to counter the crassness of the utilitarian calculus. It represents an approach to ethics in which the interests of the other are taken as seriously as possible within the confines of the situation in which action is called for. My aim is to explore this approach critically, and to invesitgate its desirability, applicability and efficacy with particular reference to the moral problems raised by the new genetic technologies. / AFRIKAANSE OPSOMMING: Nuwe genetiese tegnologieë bv stamselnavorsing en kloning, opper enigmatiese morele probleme binne die veld van bio-etiek. Die doel van hierdie tesis is om die filosofiese en etiese belang van die idee van “ ‘n etiek van verantwoordelikheid” (soos dit in die werk van Hans Jonas, Zygmunt Bauman en Emmaneul Levinas ontwikkel is) vir morele refleksie van hierdie probleme te ondersoek. ‘n Etiek van verantwoordelikheid is ‘n nuwe benadering binne etiek wat ‘n alternatief daarstel vir onderskeidelik utilitarisme (waar ‘n moreel korrekte aksie dié aksie is wat die beste gevolge vir die meeste mense tot stand bring) en deontologie of reël-moraliteit (waar ‘n moreel korrekte aksie dié aksie is wat die morele reëls gehoorsaam). Albei hierdie tradisionele etiese teorie beskik oor tekortkominge. Utilitarisme voer byvoorbeeld aan dat ‘n aksie wat gewoonlik as kontraintuitief beskou word, moreel korrek is. Aksies soos steel, die vertel van leuens en marteling kan volgens die utilitaristiese beskouing moreel regverdig word. Deontologie slaag weer nie daarin om sinvol met werklike en aktuele morele probleme om te gaan nie, en dit is dikwels onduidelik watter morele reël voorkeur moet kry wanneer dit op ‘n morele dilemma toegepas word. ‘n Etiek van verantwoordelikheid wat deur bogenoemde outeurs voorgestaan word, bied ‘n alternatief vir die simplisitese idee dat vaste morele reël bestaan wat op ‘n universele wyse kan bepaal wanneer ‘n aksie moreel reg of verkeerd is. ‘n Etiek van verantwoordelikheid beweeg ook weg van die kras benadering van utilitarisme, en bied ‘n maak ruimte vir ‘n meer komplekse, genuanseerde benadering tot die etiese problematiek. Dit verskaf ‘n benadering tot etiek waar die belange van die ander binne die etiese besluitnemingsproses, ernstig opgeneem word. Die doel van hierdie tesis is om die tradisionele etiese teorie krities te benader, waarna die toepasbaarheid en effektiwiteit van ‘n etiek van verantwoordelikheid, ondersoek sal word.

Thesis (DPhil (Philosophy))--University of Stellenbosch, 2007. / Should surplus embryos which are destined to be discarded be protected at all cost, to the extent that they cannot contribute to medical knowledge - knowledge which could benefit society at large? Are embryos people or merely items of property? Different moral theories address these questions in different ways. Deontologists argue that the end never justifies the means and that the right not to be killed is more fundamental than the obligation to save. Utilitarians, on the other hand, argue that certain criteria should be met before moral significance can be contributed to an entity. The question of the moral status of the embryo is, as my discussion will show, one of the most widely discussed issues in the history of bioethics. Extensive literature exists on the topic. This study holds that an Ethics of Responsibility (ER) should by applied when answering the questions posed above as it encourages one to accept responsibility for the choices or decisions made and to defend them accordingly. I have endeavoured to answer the question of the personhood and rights of the embryo within the framework of the Ethics of Responsibility. Although these concepts overlap in many ways they remain central to the debate surrounding the sanctioning or prevention of the use of human embryonic stem cells in research. After identifying the micro-issues surrounding the human embryonic stem cell debate and explaining why both the deontologist and utilitarians fail to provide any adequate answers in this respect, I turn my attention to macro-issues such as safety concerns surrounding the usages and storage of stem cells. Commercialization, power issues, accessibility and the allocation of limited resources are also examined. Living in a society such as South Africa one cannot be blind to the inequalities of our health system. On a macro level I cannot but conclude that stem cell research does not seem to be a viable exercise within the South African context. South Africa faces a health care crisis far greater than the benefits stem cell research currently has to offer. However, the need still exists for a policy to guide future lawmakers who might need to address stem cell research and to guide decisions and actions. This brings me to my final chapter, namely proposing a morally justified policy for South Africa. I propose a policy which respects and values the autonomy of the progenitors’ choices (provided they have not been coerced) and which focuses on the beneficence of the greater society. Furthermore, it is paramount that the goal of any stem cell research should be for therapeutic use ONLY. Before commencing with the extraction of the stem cells, scientists should be obligated first to present convincing evidence that they have tried alternative ways to reach the same result. Once this has been proven, a regulatory body could issue the scientist/team with a license to undertake the specific research with a specific therapy as goal in order to prevent abuse. If they are found guilty of any unethical conduct their licenses should be revoked and an investigation launched.

Social network sites (SNSs) have become very popular, with more than 1.39 billion people using Facebook alone. The ability to share large amounts of personal information with these services, such as location traces, photos, and messages, has raised a number of privacy concerns. The popularity of these services has enabled new research directions, allowing researchers to collect large amounts of data from SNSs to gain insight into how people share information, and to identify and resolve issues with such services. There are challenges to conducting such research responsibly, ensuring studies are ethical and protect the privacy of participants, while ensuring research outputs are sustainable and can be reproduced in the future. These challenges motivate the application of a theoretical framework that can be used to understand, identify, and mitigate the privacy impacts of emerging SNSs, and the conduct of ethical SNS studies. In this thesis, we apply Nissenbaum's model of contextual integrity to the study of SNSs. We develop an architecture for conducting privacy-preserving and reproducible SNS studies that upholds the contextual integrity of participants. We apply the architecture to the study of informed consent to show that contextual integrity can be leveraged to improve the acquisition of consent in such studies. We then use contextual integrity to diagnose potential privacy violations in an emerging form of SNS.

Submitted by Filipe dos Santos (fsantos@pucsp.br) on 2017-06-01T13:20:42Z No. of bitstreams: 1 Márcia Sgarbieiro.pdf: 1848839 bytes, checksum: a41266fc35d35dc2c35e60f1dc73d965 (MD5) / Made available in DSpace on 2017-06-01T13:20:42Z (GMT). No. of bitstreams: 1 Márcia Sgarbieiro.pdf: 1848839 bytes, checksum: a41266fc35d35dc2c35e60f1dc73d965 (MD5) Previous issue date: 2017-05-19 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES / Fundação São Paulo - FUNDASP / This thesis aims to analyse the determinations and implications which embrace the demand of research Project submission in Social Service to the Ethics Committee based on the Postgraduate Program on Social Service and Social Politics and of the Ethics Committee in Research with Human Beings of the State University of Londrina. In order to reach this goal, I aim to analyse the ethics grounds built by Social Service and materialized in the Professional Ethics Code of the Social Workers. The needs to develop a study about ethics in Social Service is due to the my insertion to various Ethics Committee in Research during my academic history between 2006 and 2015. To reach the objectives I understand that the researcher must try repeatedly to access the object of study, aiming to get the reality in its multiple determinations. Categories are built every time there is approach and return. These categories allow the evident to make way to wider determinations. The method which is, at the same time, materialistic and dialectic, stems from the empiric and gathers the relation to other empirical groups, its historical origin taking into account the phenomenon historicity and this is rebuilt according to the researcher’s reflection. As method’s categories, those which contemplate the research object were contradiction, historicity, mediation and totallity. My research is exploratory and descriptive, mainly when I locate the Postgraduate Program in Social Service and Social Politics of the State University of Londrina and the Ethics Committee of the same University. This thesis was developed in the chapters. The first delas with my theoretical background based on Barroco (2005). I begin with a discussion about the ethical development aiming the praxis through the Project. The next step is to write about the ethical-political Project historically built by the social workers’ category. I end the first chapter writing about the bioethics and its basis: bioethics principialism.I seek a critique of the bioethical principles based on the Social Service Ethical Code, on Barroco and Terra (2012). I begin the second chapter making history of the developing process of the protocol whose result is the resolution 510/16, which deals with ethics in Human and Social Science research. Still in chapter II, I talk about the research and the production of human knowledge under the historical-critical perspective. I go on the second chapter creating a context and adding caracteristics to my research locus, which is the Postgraduate Program in Social Service and Social Politics of the State University of Londrina. I finish the chapter II positioning the Ethics Committee in Reseach of Human Beings of the State University of Londrina – CEP – UEL. The third chapter deals with my field research. For this section, I interviewed two students and one professor of the program. There are three aspects of my field research: the first is the reasons to submitt or not to the CEP research. Secondly, if there are any problems during the process and why the CEP evaluation process can become a problem through research. Finally, the last aspect relates to the implications of the submission to ethics in Social Service research. I understand that these aspects answer the first question about the implications and determinations of the CEP evaluation about ethics in Social Service research / A presente tese tem por objetivo analisar as determinações e implicações que envolvem a exigência de submissão dos projetos de pesquisa em Serviço Social aos Comitês de Ética em Pesquisa a partir do programa de Pós-graduação em Serviço Social e Política Social e do Comitê de Ética em Pesquisa com Seres Humanos da Universidade Estadual de Londrina. Para tanto busco analisar a fundamentação ética construída pelo Serviço Social e materializada no Código de Ética Profissional – CE – dos Assistentes Sociais. A necessidade de aprofundar o estudo acerca da ética na pesquisa em Serviço Social se deu devido minha inserção em vários Comitês de Ética em Pesquisa durante minha trajetória acadêmica desde o ano de 2006 até 2015. Para alcançar os objetivos entendo que o pesquisador faz sucessivas aproximações ao objeto de pesquisa, buscando extrair da realidade suas múltiplas determinações. A cada aproximação e retorno, vão se construindo categorias. Estas categorias fazem com que o aparente dê lugar a determinações cada vez mais abrangestes. O método materialista-dialético parte do empírico e apanha as relações com outros conjuntos empíricos, sua gênese histórica considerando a historicidade do fenômeno e isto é reconstruído no pensamento do pesquisador. Como categorias do método, as que contemplaram o objeto de pesquisa foram contradição, historicidade, mediação e totalidade. Desenvolvi uma pesquisa exploratória e descritiva, principalmente quando situo o Programa de Pós-graduação em Serviço Social e Política Social da Universidade Estadual de Londrina e o Comitê de Ética em Pesquisa da UEL. A presente tese foi elaborada em três capítulos. O primeiro trata de meu referencial teórico baseado em Barroco (2005). Inicio com a discussão da construção da ética como objetivação da práxis através do trabalho. Em seguida discorro acerca da construção do projeto ético-político construído historicamente pela categoria dos assistentes sociais. Finalizo o primeiro capítulo escrevendo acerca da bioética e de seu fundamento: o principialismo bioético. Baseado no Código de Ética do Serviço Social e em Barroco e Terra (2012), busco uma crítica aos princípios bioéticos. Inicio o segundo capítulo historicizando o processo de construção da minuta que resultou na resolução 510/16 que trata da ética na pesquisa para a área das Ciências Humanas e Sociais. Em seguida, ainda no capítulo dois, trato a respeito da pesquisa e da produção do conhecimento humano na perspectiva histórico-crítica. Dou continuidade ao segundo capítulo contextualizando e caracterizando meu lócus de pesquisa – o Programa de Pós-graduação em Serviço Social e Política Social da UEL. Finalizo o segundo capítulo situando o Comitê de Ética em Pesquisa Envolvendo Seres Humanos da Universidade Estadual de Londrina – CEP-UEL. O terceiro capítulo trata da minha pesquisa de campo. Para esta sessão foram realizadas três entrevistas com dois estudantes e um docente do programa. Como eixos de análise desta minha pesquisa de campo, delimitei três: primeiramente “por que submeter, ou não submeter as pesquisas ao CEP”. Em segundo lugar “se ocorrem algum problema no processo? Por que o processo de avaliação do CEP pode se tornar um problema no processo de pesquisa”. O último eixo se refere às “implicações da submissão para a ética na pesquisa em Serviço Social”. Entendo que estes eixos de análise respondem à pergunta inicial acerca das implicações e determinações da avaliação do CEP sobre a ética na pesquisa em Serviço Social

Bibliography : leaves 251-277. / viii, 295 leaves : / Title page, contents and abstract only. The complete thesis in print form is available from the University Library. / Examines the epidemiology of eye disease in Anangu Pitjantjatjara people of South Australia. The ethical issues of research in Aboriginal communities is discussed with reference to the handling and ownership of data. / Thesis (M.D.)--University of Adelaide, Dept. of Community Medicine, 1994