Discussion of manipulation as a form of undermining the consent of participants in clinical reserach, and specifically pregnant women who are HIV positive.. / I will argue that the relationship between the clinician scientist and the participant in the ACTG 076 trials involved unethically manipulative elements. My question of unethical manipulation examines the relationship between the clinician scientist and the participant. My first chapter establishes manipulation as follows, ‘A manipulates B if and only if A motivates B to make a decision or perform an action that bypasses B’s rational capacities by means of deception, emotional pressure, or exploitation of B’s ego depleted state.’ I argue that manipulation is prima facie unethical because it violates one’s autonomy. In the second chapter I examine the concerns of illness, gender roles, pregnancy, and HIV status, which can cause ego depletion and increase the participants’ vulnerability to manipulation. After analysis, I conclude that, although none of these elements can be eliminated as concerns for the clinician scientist, if they are not adequately accounted for, the clinician scientist has unethically manipulated the participant to enter and remain a part of the trial. I suggest that an adequate account would involve special consideration of how these vulnerabilities interact within the specific context of the trial. My third and final chapter will relate my conclusions to the current and upcoming research that is actively incorporating pregnant women as participants. / Thesis / Master of Arts (MA) / This thesis will examine the need to include the term “manipulation” into current ethical guidelines for Western bioethics because manipulation is a concept that is separate from concepts such as “coercion,” “force,” “exploitation,” or “undue influence” which appear in current Western bioethical guidelines. Manipulation is an unethical influence of another’s decision-making that undermines their autonomy, whereas autonomy is a key feature of Western bioethics and must be fostered rather than undermined or hindered. This thesis will discuss a clinical case in which pregnant women with HIV were enrolled in a clinical trial and I will discuss how illness, gender, pregnancy, and HIV status can cause one’s ego to be depleted so that they are more vulnerable to manipulation than other clinical participants. Finally, I will recommend that states, ethics boards, and researchers are the primary actors responsible for ensuring that participants are not manipulated in clinical research settings.

No description available.

Thesis (MA)--Stellenbosch University, 2014. / ENGLISH ABSTRACT: The transhumanist movement propounds the view that the evolution of humanity must be extricated from the contingencies of blind natural selection and actively directed by human beings themselves, utilising existing as well as nascent technologies, in order to radically enhance and thus transform individual human capabilities to levels which far surpass current capacities. Transhumanism has elicited vehement critique, however, due to the claim that the transformations it proposes will result in a new posthuman species; and thus, that its aims represent a violation of human dignity. In order to assess this claim it is necessary to firstly investigate the aims and values of the transhumanist movement, as well as the technological means through which it proposes these aims will be fulfilled. This task is the focus of the first half of this thesis. Secondly, the concept of dignity itself must be examined in order to ascertain its status as a means of critiquing transhumanism. The second half of this thesis therefore explicates the notion of dignity by tracing its historical interpretations and uses, as well as the way in which it has been employed to uphold human rights and to adjudicate bioethical dilemmas in the contemporary milieu. This investigation enables the assessment of the two most renowned dignity arguments, namely, the arguments of the bioconservative thinkers Leon Kass and Francis Fukuyama which have been lodged against transhumanism, as well as the counter-argument of the transhumanist Nick Bostrom. In light of this discussion, the conclusion is that the notion of dignity is plagued by irrevocable ambiguity, vagueness and inconsistencies, due to the presence of conflicting interpretations. These findings have implications for the concept’s efficacy to adjudicate the complex ethical conundrums posed, not only by transhumanism, but in the bioethics arena in general. / AFRIKAANSE OPSOMMING: Die transhumanistiese beweging verteenwoordig die standpunt dat die evolusie van die mensdom losgemaak moet word van die toevallighede van blinde, natuurlike seleksie en aktief gerig moet word deur die mens self, deur van bestaande sowel as ontwikkelende tegnologieë gebruik te maak ten einde individuele menslike vermoëns radikaal te verbeter en dus te transformeer tot op vlakke wat huidige vermoëns ver oorskry. Transhumanisme het egter hewige kritiek ontlok weens die aanspraak dat die transformasies wat dit voorstel ‘n nuwe post-menslike spesie tot gevolg sal hê en dus dat die oogmerke daarvan ‘n skending van menswaardigheid verteenwoordig. Ten einde hierdie aanspraak te beoordeel, was dit eerstens nodig om die oogmerke en waardes van die transhumanistiese beweging te ondersoek, sowel as die tegnologiese middele wat voorgestel word as dit waardeur hierdie oogmerke verwesenlik sal word. Hierdie taak is onderneem in die eerste helfte van die tesis. Tweedens is die konsep van waardigheid self krities onder die loep geneem ten einde die status daarvan as ‘n middel om transhumanisme te kritiseer, te beoordeel. Die tweede helfte van hierdie tesis verhelder dus die idee van waardigheid deur die historiese interpretasies en gebruike daarvan na te gaan, sowel as die manier waarop dit aangewend is om menseregte te ondersteun en om dilemmas in die bioetiek in die hedendaagse milieu te bereg. Hierdie ondersoek maak die beoordeling van die drie mees bekende waardigheidsargumente wat teen transhumanisme gebring is, naamlik die argumente van die biokonserwatiewe denkers Leon Kass en Francis Fukuyama, sowel as die teenargument van die transhumanis Nick Bostrom, moontlik. Na aanleiding van hierdie bespreking is die gevolgtrekking van die skrywer dat die idee van menswaardigheid deurspek is met onvermydelike dubbelsinnigheid, vaagheid en teenstrydighede as gevolg van teenstrydige interpretasies. Hierdie bevindinge het implikasies vir die doeltreffendheid van die konsep om die komplekse etiese probleme wat gestel word, nie net deur transhumanisme nie, maar deur die bioetiek arena oor die algemeen, te beoordeel.

Dignity is the concept most commonly associated with the biotechnological revolution, and almost always used by conservatives in ethics and politics to justify constraining research into novel biotechnologies like cloning, genetic enhancement and life extension. At the same time, dignity is often criticised as inadequate to play such a fundamental role in future-facing bioethics. This thesis is a work at the intersection of applied ethics and politics, and seeks to address two main questions: whether dignity is a useless, hopelessly vague concept, and whether dignity is an inherently political, specifically conservative concept. This problem will be addressed by analysing the concept of dignity as it is found in bioethics policy and in everyday life. Using this conceptual analysis, a structure will be identified that both liberal and conservatives have in common meaning that dignity is not hopelessly vague. Despite having analogous structures, the argument in this thesis shows that the liberal and conservative conceptions of dignity are intractable and both support different positions in many arguments. The implication of this is that dignity will not be useful in building a consensus around policies in future-facing bioethics.

Science can define what is practicable, what can be done, but it cannot determine which developments it is right to pursue- this is largely an ethical judgment attempting to answer ‘ought we to do it’? The most sensible approach to making an ethical assessment is to try and weigh up the benefits of a novel technology against its potential to do harm. Deciding whether GM technology is acceptable in ethical terms involves a judgment about both the plausibility and moral weight of competing sets of claims, beginning with an assessment of the possible benefits and risks. Using four main guiding principles as the basis of my discussion and point of evaluation, I focus firstly on the principle of general welfare to examine the debate what would amount to an adequate safety assessment of GM foods and its possible ecological risk. The right of consumers to freedom of choice is addressed by exploring both the arguments against and for labelling. The principle of justice then questions the claims whether food security can indeed be improved by using GM technology and how patents, bioprospecting and biopiracy can be judged ethically justifiable. Finally the ethical status of the natural world is raised by attempting to answer whether modern biotechnology could be considered blasphemous and whether it is ethically permissible to breach the natural integrity of the species. Using these guiding principles do not make such as assessment straightforward as they cannot be rigidly applied in an abstract way to reflect absolutes on what is right or wrong and their operation depends on context. My approach is normative and presented in a way to stimulate dialogue as an explorative ethical travel through the genetically modified zone with the recognition that the debate remains inconclusive and controversial. Keywords: GM; Genetically Modified Foods; GM Technology; Transgenic.

O objetivo desta pesquisa é explorar a motivação e as potenciais complicações do uso da tecnologia para melhorar fundamentalmente a condição humana. Inicialmente a pesquisa se debruçará sobre alguns pressupostos filosóficos básicos para a discussão deste melhoramento. Para tal será abordado a heurística evolutiva proposta por Anders Sandberg e Nick Bostrom, em seguida será apresentado brevemente alguns traços básicos da condição humana a saber: cognição, moralidade e ligação afetiva de acordo com a perspectiva da psicologia evolucionista, um passo importante na heurística evolutiva supramencionada. A seguir o trabalho versará especificamente sobre melhoramentos que tenham como alvo a própria moralidade humana, inicialmente sobre as fortes motivações de realizar tal melhoramento, e ao final sobre os riscos e problemas tanto filosóficos como técnicos de tentar realizar tal modificação na moralidade humana. Tentativamente, a análise será original ao (1) aceitar pressupostos dos defensores do melhoramento moral, e sua conclusão de que o mesmo é um imperativo caso conduzido de maneira correta, (2) abandonar alguns dos possíveis contra-argumentos, no entanto, também (3) concluir a existência de severos problemas em potencial no que tange ao melhoramento moral / The intent of this research is to investigate the motivations and potential risks of using technology to alter the human condition. Firstly, it will explore some of the basic philosophical assumptions behind such discussions. Hence, it will evaluate the evolutionary heuristics proposed by Anders Sandberg and Nick Bostrom and its potential for solving many issues arising when considering human enhancement, therefore introducting one basic philosophical ground when arguing for or against these modifications. Thence, it will be given an introduction to some basic traits of the human condition, e.g.: cognition, morality and pair-bonding, from the perspective of Evolutionary Psychology. Such traits will be then considered as targets for human enhancement. These are important steps in, and thus a application of, the aforementioned evolutionary heuristics. Secondly, this dissertation will specifically investigate the risks of using technology to alter human morality. It will focus on the possibility that attempting to improve human moral dispositions moral enhancement could in fact yield a future without moral value. This analysis will be tentatively novel in that it will focus on risks that could arise even if the claims of moral enhancement advocates are true and some arguments against it unsound

Cette thèse se situe à la rencontre des Études sur les sciences et des théories biopolitiques. Elle porte sur les relations de savoir et de pouvoir qui animent la bioéthique. Ce champ est saisi comme étant des espaces et temps de négociation de risques d’ordre juridique, social et moral de développements techno-scientifiques. Alors, cette recherche s’intéresse à cette évaluation de possibilités et pratiques biomédicales relevant de donner ou prendre la vie, des organes, des embryons humains, des informations génétiques, du sang ou des cellules. Le Comité de bioéthique du Conseil de l’Europe, le Comité consultatif national d’éthique pour les sciences de la vie et de la santé et les Espaces de réflexion éthique régionaux sont les trois nœuds étudiés. L’institutionnalisation des jugements de valeurs qu’ils permettent de constater est faite d’une circulation multi-scalaire d’experts qui concentre productions et normatisations. Cette circulation forme une communauté épistémique bioéthique, universitaire et administrative. Dans ce mode de gouvernement, les validations professionnelles se confrontent à leurs propres narrations et tentatives de participation élargie à la fabrique bioéthique. En effet, Consultations, États Généraux, Conférences de citoyens et Débats publics essentiellement confirment les accréditations et configurations académiques et régulatrices. De propositions successives de compréhension, l’analyse invite à penser la bioéthique comme étant un domaine scientifique d’Études morales des sciences et techniques. C’est, en outre, cette identification même qui contraste la bureaucratisation de la vertu. C’est disciplinariser des savoirs sur la morale des corps humains biomédicaux qui s’oppose à l’intervention de discipliner individus et populations. / This thesis sits at an intersection of Sciences Studies and Bio-political theories. It concerns the knowledge and power relations that shape Bioethics. This field is considered as spaces and times of negotiation of legal, social and moral risks associated with techno-scientific developments. Hence, the research interest is this evaluation of the biomedical possibilities and practices of giving or taking life, bodies, organs, human embryos, genetic information, blood or cells. The Council of Europe’s Bioethics Committee, the National Consultative Ethics Committee on Life and Health Sciences and the Espaces de réflexion éthique (Regional Offices for Ethics) are the three knots studied. The institutionnalisation of value judgments these reveal lies on a multi-scalar circulation of experts that concentrates productions and normatisations. This circulation shapes a university- and administration-based bioethical epistemic community. In this mode of government, professional validations are confronted with their own narratives and initiatives of broader participation in Bioethics making. Indeed, consultations, États Généraux, citizens’ conferences and public debates essentially confirm academic and regulatory accreditations and configurations. From successive propositions of comprehension, the analysis invites consideration of Bioethics as a scientific field of Moral Studies of Sciences and Technology. Moreover, it is this identification that contrasts the bureaucratization of virtue. It is disciplinarizing knowledge on biomedical human bodies’ morality that is an opposition to the intervention of disciplining individuals and populations.

Although science is viewed by some as objective, analytical and unaffected by morals and values, the practice of science does raise many ethical issues. From an ethical standpoint, science teachers have an obligation to ensure that their students develop the skills to enable them to evaluate and make decisions about ethical issues associated with scientific advances so that they can make informed choices as adults. An appropriate forum for such a pedagogical concern is the subject of bioethics education.The purpose of this doctoral study was to investigate the teaching of bioethics in science. Specifically, the study attempted to evaluate the effectiveness of a range of innovative pedagogical strategies utilised by teachers who were incorporating bioethics education into their secondary science curricula. Bioethics education is concerned with enabling students, firstly, to appreciate the range of ethical issues associated with the life sciences and, secondly, to develop decision making skills based on ethical theories.Using an interpretive case study approach underpinned by a constructivist theoretical framework, I examined the teaching practice of three science teachers in different school systems. Each of these teachers taught Year 10 or Year 11 science courses that included a bioethics component. The research process was informed by an ethic of care and the constructivist criteria of credibility, transferability and ontological authenticity.As a result of the early data generated, I adopted the role of a bricoleur and used alternative research methods to pursue emergent research questions. I developed a survey consisting of four bioethical dilemmas. Bioethics students were asked to resolve each of the dilemmas and provide reasons to support their decisions. Using an ex post facto research design, I compared students who had studied bioethics with a comparison ++ / group of students who had not. I also wrote narrative tales in an endeavour to provide an authentic account of the learning of individual students. Commentaries on the tales, by students and teachers, helped to enrich my understanding of students' learning experiences in the bioethics classes.The research findings are presented as 'inferences', a term which acknowledges the context dependent nature of the data generated. Five themes emerged from the data analysis which, together, indicate (1) the nature of potentially successful teaching strategies for bioethics education and (2) obstacles to students' successful engagement in learning bioethics: teacher attributes; design of bioethics courses; student attributes; impact on student learning; and physical and social constraints. Another key finding concerns the difficulty facing researchers who wish to 'measure' the impact of bioethics teaching on student learning.All three teachers displayed potentially successful teaching strategies. They were committed to the inclusion of bioethics education in their science courses. They had clearly articulated pedagogical goals related to bioethics education. They endeavoured to create safe learning environments in which students could clarify and explore their developing ethical values. When students expressed extreme views, the teachers, through careful questioning, challenged them to consider alternative ethical positions.In relation to the design of bioethics education courses, most of the learning activities in which students participated were based on small group and whole-class discussion (e.g., role plays, oral presentations). These activities provided opportunities for students to examine a topic in depth. Importantly, students were provided with information to help them understand the scientific content area before they could appreciate the associated ethical issues.In ++ / the three cases, it appears that bioethics education had a variable effect on student learning. Attributes were identified that may have influenced student engagement in opportunities to learn bioethics: the students' moral maturity, academic ability, attitude to learning, beliefs about science and ethics, family and religious background.Evidence suggests that exposure to bioethics education can affect favourably students' attitudes to science. However, the results of the bioethical dilemma survey suggest that, on average, there was no difference in the way that students resolved dilemmas, regardless of whether or not they had been exposed to bioethics education. Although there was considerable variation amongst students, most of the students' responses differed from those of experts in that the students tended to focus solely on the rights of individuals, without considering the long term consequences of their decisions.Constraints were identified that may adversely affect the impact of bioethics education in science: scarcity of resources, including insufficient teaching time; and, amongst science teachers, lack of expertise in the content areas that raise bioethical issues and lack of experience in the types of learning activities appropriate for bioethics education.The findings of this research study are significant as they highlight important issues that may need to be considered by curriculum planners and science teachers who wish to incorporate bioethics education into science curricula.

Tissue banks are thought to be an essential resource for medical research in the post-genomic age. Collections of tissue, usually removed in the course of diagnostic or therapeutic procedures, enable laboratory-based epidemiological studies to be carried out, linking abnormalities in the tissue to disease aetiology, prognosis and treatment responsiveness. There are, however, a number of technical, regulatory and ethical concerns that challenge those wishing to engage in tissue banking research. It is becoming increasingly apparent that tissue banking research is not without risk of harms, even though there is no direct physical risk to donors. This is because, in order to be most useful, banked specimens need to be linked to personal information about tissue donors and this poses the risk of inadvertent disclosure of personal─ particularly genetic─ information to those who might exploit such information (eg. insurance companies and employers). Furthermore, the long-term storage of specimens, and the impossibility of predicting all potential types of research programs for which they might be useful, raises the possibility that future projects will be carried out that are unacceptable to some (past) tissue donors. The ethical principles of autonomy and respect for persons demand that research subjects be informed of such risks and of the nature of the research, and that they participate willingly. On the other hand, there is a desire for science to progress unhindered by stringent consent requirements. For these reasons, a debate has emerged in the academic (bioethical and biomedical) literature and in the legal (law reform) sphere over what would constitute adequate consent. Despite an extensive discourse, it is still unclear whether it is permissible to carry out research on archival tissue that was originally taken for diagnostic purposes and whether project-specific (as opposed to open-ended) consent is required for research on tissue collected today. This lack of clarity is of concern to researchers, ethics committees and research subjects, all of whom recognise the importance of tissue banking research, yet fear that current consent procedures may be ethically or legally inadequate. Thus it is important that the consent dilemma be resolved as quickly and definitively as possible. Ongoing controversy and regulatory ambiguity are appropriate when morally contentious issues are at stake, and their existence does not, on its own, signal any flaws in the discourse process. There are, however, two reasons to suspect that the current �consent to tissue banking� debate, as portrayed in the academic literature and law reform documentation, is problematic. Firstly, the debate appears to be mired in an intractable conflict between those who want to maximise personal autonomy through stringent consent requirements, and those who want the scientific endeavour to progress in a manner that is unconstrained by what are viewed as arduous consent procedures. Secondly, the possible practical options (consent models) being generated by the debate are all limited because they are underpinned by a restricted notion of consent as an individualistic, legalistic and static activity, without consideration of any alternative conceptualisations of consent. Through a thematic analysis of the current �consent to tissue banking� debate in the academic and law reform literature (Section 3), this thesis shows that debate is essentially occurring between those who see individual autonomy (and stringent consent) as being of primary importance, and those who see unimpeded, market-driven scientific progress as the more important social good, which should not be impeded by unnecessarily stringent consent. Thematic analysis also confirms the existence of the two problems described above, and a failure of those engaged in the debate to reflect on, and challenge, the value-level assumptions underpinning their arguments and those of their opponents. It is argued that this lack of reflection accounts for the two problems: � Firstly, it precludes recognition of the cause of─ and, therefore, ways of resolving─ the intractable conflict at the centre of the debate. Value-level reflection shows that this is a result of the logical and moral conflict within western liberalism, between two modernist goods: individual freedom and scientific progress. � Secondly, it precludes the generation of varied conceptions of consent. Value-level reflection shows that the current range of consent models is restricted to procedures which are individualistic, abstract, static and legalistic, since they are underpinned by western liberal notions of autonomy and scientific progress. This recognition paves the way to consideration of alternative notions of autonomy, scientific progress and, therefore, consent, such as those derived from communitarian and feminist systems of values. A conceptually enriched model of tissue banking consent is then developed (Section 4). This model incorporates dominant (liberal) conceptions of autonomy and scientific progress as well as alternative notions of autonomy and scientific progress espoused by communitarian and feminist systems of values. It is argued that this conceptually-enriched model provides a practical solution to the two problems associated with the standard �consent to tissue banking� debate. In relation to the philosophically intractable conflict─ or what is termed the �modernist dilemma�─ between those privileging autonomy and those privileging scientific progress, it shows how the two apparently conflicting �modernist� goods can both be accommodated at a practical level, thus making the �consent to tissue banking� debate more tractable and fruitful. In relation to the restricted range of consent models being generated by the current debate, it provides new insights into the ways in which consent might be obtained such that a broader range of community values can be accommodated. More specifically, it stimulates the construction of a model that 1) involves communities, as opposed to merely individuals, in all stages of the scientific process; 2) is flexible and able to adapt consent procedures to specific contexts, rather than predefining procedures in abstract terms; and 3) is transactional and relational rather than static and legalistic. This outcome has interesting philosophical as well as practical implications. It shows that despite apparently unresolved, and possibly irresolvable, normative-level conflicts between the two modernist elements of western liberalism (autonomy and scientific progress), and between liberal, feminist and communitarian systems of values, a multi-perspectival, inclusive, model-building approach provides a practical solution that circumvents these normative-level conflicts.

Thesis (M.A.)--Trinity International University, 2000. / Abstract. Includes bibliographical references (leaves 67-72).