This thesis aims to make feminist theory an integral part of hospital ethics committee ("HEC") decisionmaking. Specifically, the feminist theories discussed in this thesis prioritize an awareness of social context. The small-scale study conducted for this thesis found that HECs already consider social context to some extent but that they may also be open to more systematic integration. As opposed to courts, HECs provide a space where innovative alternatives (e.g., feminist approaches) to principalist bioethical decisionmaking can be tested. In order to encourage the development of such alternatives, this thesis has proposed a framework for the relationship between courts and HECs so that patients can benefit from the strengths of both entities in ways that have not been possible in the past.

This dissertation research project examines how contemporary academic bioethics in the U.S. balances the aspiration to guide biomedical research and practice with the need to become an institutionally legitimate influence in society. Since its inception three decades ago, to what extent has bioethics made biomedicine more socially accountable? At the same time, to what extent has bioethics been rendered a public-relations tool for academic and corporate biomedicine? This project investigates the co-production of the legitimacy and the logic of the academic field of bioethics by examining the activities of bioethicists in three professional arenas: the establishment of an academic bioethics unit, discourse on the legal liability of institutional review boards and health care ethics consultants, and the deliberations and recommendations of a federal bioethics commission.Bioethicists' efforts to legitimate their field are viewed as competition and collaboration with other professional groups to stake out an emblematic expertise, which is then tendered to various societal clients. A case study of an academic bioethics unit was conducted to reveal how the unit's efforts to secure material resources and organizational legitimacy shape the center's intellectual output, drawing on the unit's archival documents and interviews with the unit's director, faculty, staff, and graduate students. Discourse analysis was used to explore what anticipated legal liability reveals about the legitimacy of expertise claims and the shaping of those claims. The proceedings of the National Bioethics Advisory Commission related to the human stem cell research debate were used to examine the boundary-work conducted by the commission at the borders between science and ethics, and between ethics and public policy.The research described here shifts attention in the budding sociology of bioethics from clinical to academic bioethics, and highlights the institutional and power relationships amongst bioethics, biomedicine, and public policy. This study also contributes to the fields of higher education studies and science and technology studies, where ethics, and the relationship between legitimacy and expertise, have not been fully explored. The findings presented here provide useful insight into the challenges and opportunities bioethicists face in cultivating socially responsible biomedical science and technology.

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In Ontario, the organs of deceased donors are usually allocated to those recipients who are ranked highest on the province’s waiting list for transplant surgery. However, on rare occasion, a donor, or the donor’s family, will request that an organ be given to a designated recipient or designated group of recipients. The ethical acceptability of these so-called “directed donations” of organs from deceased donors is debated in the transplant literature. The purpose of this study was to elicit the views of a group of transplant professionals in Ontario on the question, “Under what circumstances, if any, should a donor or the donor’s family be allowed to choose the recipient of the organ?” Qualitative in-depth interviews were conducted with 14 Ontario transplant professionals from a range of clinical disciplines. An analysis of these interviews revealed several practical and ethical considerations that the transplant professionals believed to be important in assessing the acceptability of directed donations.

In Ontario, the organs of deceased donors are usually allocated to those recipients who are ranked highest on the province’s waiting list for transplant surgery. However, on rare occasion, a donor, or the donor’s family, will request that an organ be given to a designated recipient or designated group of recipients. The ethical acceptability of these so-called “directed donations” of organs from deceased donors is debated in the transplant literature. The purpose of this study was to elicit the views of a group of transplant professionals in Ontario on the question, “Under what circumstances, if any, should a donor or the donor’s family be allowed to choose the recipient of the organ?” Qualitative in-depth interviews were conducted with 14 Ontario transplant professionals from a range of clinical disciplines. An analysis of these interviews revealed several practical and ethical considerations that the transplant professionals believed to be important in assessing the acceptability of directed donations.

Le diagnostic et le dépistage prénatals ont été créés pour tenter de diminuer, et parfois même enrayer, les inquiétudes qui habitent les parents, et tout particulièrement la femme, dans la période d'attente qu'est la grossesse. Par contre, la science évolue rapidement. Les nouvelles technologies dans le domaine prénatal s'accumulent sans que nous ayons le temps d'en fixer les limites. Il nous apparaît donc primordial de nous pencher sur la problématique de l'encadrement normatif du diagnostic et du dépistage prénatals, afin de comprendre les dilemmes auxquels sont confrontés les différents acteurs. Notre recherche se concentre sur le dépistage par analyse de sérum maternel, une technique de dépistage prénatal. Or, cette technique présente un faible degré de fiabilité. De nombreuses questions éthiques découlent donc de cette pratique. Dans le cadre de notre travail de recherche, nous analysons les enjeux éthiques qui entourent l'utilisation de ce dépistage, puisque les normes éthiques peuvent exercer une certaine influence sur la pratique médicale. De plus, suite à nos recherches, nous avons pu constater que la pratique du dépistage par analyse de sérum maternel est très différente d'un pays à l'autre, et même, d'une région à l'autre dans un même pays. Cette disparité ne s'observe pas uniquement dans la pratique, mais également au niveau des normes juridiques et professionnelles encadrant cette pratique. De plus, en ce qui a trait à l'application des instruments normatifs, selon le pays dans lequel on se trouve, les cours de justice ne traitent pas de la même façon les actions fondées sur une naissance préjudiciable ainsi que celles fondées sur une vie préjudiciable, qui sont directement reliées au diagnostic et au dépistage prénatals. Il est donc intéressant d'effectuer une comparaison entre la pratique et l'encadrement normatif (juridique, professionnel, jurisprudentiel et éthique) du dépistage par analyse de sérum maternel. Notre travail de recherche a donc pour but de proposer quelques recommandations au sujet de l'attitude à adopter au Québec en regard du dépistage par analyse de sérum maternel, et même du diagnostic prénatal dans son ensemble. / Prenatal diagnosis and screening methods were created in an attempt to decrease, and even to eliminate, the worries of parents, especially those of the mother, during the waiting period of pregnancy. However, science evolves rapidly. New technologies in the prenatal field accumulate without giving us the time to set their boundaries. It therefore seems primordial to consider the issues surrounding the legal framework of prenatal diagnosis and screening methods in order to understand the dilemmas which face the different actors in this field. Our research foc uses on maternaI serum screening, one of the prenatal screening techniques. Indeed, this screening method is not very reliable. Actually, many ethical questions stem from this practice. In our research project, we analyze the ethical issues that emerge from the use of this screening method, since ethical nonns may exert a certain influence on medical practice. Furthennore, according to our findings, we have been able to recognize that maternaI serum screening varies from one country to another, and even from one region to another within the same country. This disparity is not only observed in practice, but it is also seen at the level of legal and professional nonns providing the current framework for this method. In addition, with regards to the application of existing nonnative 1Ools, according to the country considered, the courts of justice do not treat in the same fashion wrongful birth c1aims and wrongfullife c1aims, both unfortunate events directly related to prenatal diagnosis and screening. Therefore, it is interesting to compare maternaI serum screening on the level of what occurs in actual practice versus what is provided by the legal, professional, jurisprudential and ethical nonns in the field. The goal of our research is to propose a few recommendations on the attitude that should be adopted in Quebec concerning maternaI serum screening, and even prenatal diagnosis in general. / "Mémoire présenté à la Faculté des études supérieures en vue de l'obtention du grade de maîtrise en droit (LL.M.) option Droit, biotechnologies et société"

Discourse ethics relates to an argumentative discussion about our moral norms and their foundations. The purpose of my research is to describe and evaluate the functioning of several institutions of discourse ethics as sources of normativity for the regulation of new medical technologies and to propose some possible interactions between law and these institutions. / The institutions of discourse ethics I will look at are: national commissions of experts, national ethics committees, technology assessment committees and consensus conferences. Used in these institutions, argumentative discussion has the capacity to influence the meaning we give to our moral norms as well as the context and the conditions for their application. These discussions generate a special kind of normativity, which ought to be recognised by our legal system. Law itself would benefit from an interaction with such normativity.

Given the considerable advances in the field of biotechnology in the last decades, new issues of scientific, social, legal and ethical nature have been raised, particularly concerning inventions making use of living material, and their patentability. / Notwithstanding some reluctance at the outset, most of patent offices as well as courts and tribunals in the United States, Canada and Europe have finally accepted patentability of living organisms. Oppositions are however numerous and, more than a criticism towards the patent system itself, it is genetic engineering that is put into question. / Europe has recently regulated the legal protection of biotechnological inventions. Being a text of compromise, the Directive is already subject of controversies. The United States and Canada have not yet decided to explicitly legislate in this field. Some decisions taken in particular cases allow to determine the state of the question in these two countries. It is however not certain that they can be satisfied with an unregulated technology that raises so many moral questions. / The question of the foremost importance concerns the research branch, as well as the use that will be done with inventions emerging from the biotechnology industry. Patent law being unable to prevent technological creations, it is above all the utilisation of it that will allow to retain the most beneficial inventions for humankind and its environment.

Demonstrations that ageing and life-span can be manipulated in model animal species have increased hopes that the length of the human life-span may also be dramatically extended. The possibility of human life-span extension has provoked debate amongst bioethicists. Proponents of life-extension cite the benefits of a longer and healthier life. Opponents argue that these technologies: violate human nature; may not necessarily increase the quality of life; and, they will lead to overpopulation and social strife that outweighs any benefits to individuals. Others see problems of equity and justice in access to any potential life-extension technologies. The attitudes of members of the public have largely been neglected in ethical and policy discussions of human life-extension. In the absence of empirical evidence on public attitudes, proponents and opponents have assumed either widespread public enthusiasm for life-extension or strong opposition because of concerns about its moral acceptability or its adverse social consequences. All agree that public attitudes could be a powerful facilitator or a major obstacle to the development of life-extending technologies. The goal of this thesis is to characterise public attitudes towards life-extension and describe factors that influence these views. It examines the following questions: (1) What is the prevalence of public support for (or opposition to) life-extension research? (2) How much interest is there among the public in using a technology that could increase life-span by slowing ageing? (3) What issues are important to members of the public in forming their attitudes? (4) What ethical issues, if any, do members of the public identify? (5) Are these ethical and moral issues the same ones expressed by ethicists and social scientists? (6) How do these ethical attitudes affect their overall interest in, or support for, life-extension? (7) How are attitudes towards life-extension related to demographic characteristics such as age, gender, education, and religious beliefs? Three empirical studies were designed using a mixed methodology to answer these questions. Study 1 (focus groups) and Study 2 (individual interviews) were qualitative investigations of public attitudes towards life-extension. The results of these two studies informed the design of Study 3 - a quantitative survey of attitudes towards life-extension via telephone interviews with 605 adult members of the Australian public. Participants in Study 3 were presented with a vignette outlining the prospect of a life-extension pharmaceutical that could increase life-span to 150 years by slowing the ageing process. They were then asked to express their level of agreement with a series of statements about ethical, social and personal implications of life-extension, and their overall support and interest in using such a technology. All three studies found mixed public attitudes towards the development and use of life-extension technologies. Participants in Studies 1 and 2 were concerned about whether life-extension would be accompanied by good quality of life. Studies 1 and 2 also suggested that participants were concerned about social and ethical issues that included: the potential impact on society; whether life-extension was “natural”; and whether access to life-extension technologies would be fair and equitable. Study 3 confirmed the diversity of public views identified in the qualitative phase. While 65% supported such research, only 35% said that they would use a life-extension technology if one became available. Men were more supportive of research and more disposed to use life-extension technologies than women. 58% of participants expressed ethical or moral concerns about life-extension technologies. When asked to weigh up the potential benefits and negatives that they identified as important, almost half (48%) said that life-extension technologies would do more harm than good to society, and 40% thought that taking a life-extension pharmaceutical would do them more harm than good personally. Study 3 also showed that valid scales could be constructed to assess the strength of concerns about social and ethical issues. These scales were: personal benefits/negatives; social benefits/negatives; and natural concerns. Higher levels of support for using and developing life-extension technologies were associated with higher levels of perceived personal and societal benefits from life-extension. Participants who had more ethical concerns, and perceived more personal and social negatives were less likely to support or express an interest in using life-extension technologies. Perceptions of personal and social benefits, and having concerns about the “naturalness” of life-extension were the best predictors of support or interest in using life-extension technologies. This thesis shows that public attitudes towards life-extension are more varied than some ethicists have assumed. While there are substantial minorities who were clearly “pro” or “con”, many members of the public are concerned about ethical and social issues. It would be unwise for researchers of life-extension not to take account of public attitudes and concerns if they hope to foster public support for their work.

No description available.