Respecting autonomy without disclosing information

There is widespread agreement that it would be both morally and legally wrong to treat a competent patient, or to carry out research with a competent participant, without the voluntary consent of that patient or research participant. Furthermore, in medical ethics it is generally taken that that consent must be informed. The most widely given reason for this has been that informed consent is needed to respect the patient’s or research participant’s autonomy. In this article I set out to challenge this claim by considering in detail each of the three most prominent ways in which ‘autonomy’ has been conceptualized in the medical ethics literature. I will argue that whilst these accounts support the claim that consent is needed if the treatment of competent patients, or research on competent individuals, is to respect their autonomy, they do not support the claim that informed consent is needed for this purpose.

Quality of care for residents dying in Ontario long-term care facilities:Findings from a survey of directors of care

The purpose of this study was to collect information on the practice of end-of-life (EOL) care in long-term care (LTC) facilities in the Province of Ontario, Canada. A cross-sectional survey of directors of care in all licensed LTC facilities in the province was conducted between September 2003 and April 2004. Directors of care from 426 (76% response rate) facilities completed the postal survey questionnaire. The survey results identified communication problems between service providers and families, inadequate staffing levels to provide quality care to dying residents, and the need for training to improve staff skills in providing EOL care. Directors of care endorsed the use of a number of strategies that would improve the care of dying residents. Logistic regression analysis identified the eight most important items predictive of facility staff having the ability to provide quality EOL care. The findings contribute to the current discussion on policies for meeting the care needs of residents in LTC facilities until life's end. © 2006 Centre for Bioethics, IRCM.

The last word:Family members' descriptions of end-of-life care in long-term care facilities

A postal survey was used to collect data from family members of deceased residents of six long-term care (LTC) facilities in order to explore end-of-life (EOL) care using the Family Perception of Care Scale. This article reports on the results of thematic analysis of family member comments provided while completing the survey. Family comments fell into two themes: 1) appreciation for care and 2) concerns with care. The appreciation for care theme included the following subthemes: psychosocial support, family care, and spiritual care. The concerns with care theme included the subthemes: physical care, staffing levels, staff knowledge, physician availability, communication, and physical environment. This study identified the need for improvement in EOL care skills among LTC staff and attending physicians. As such, there is a need to implement continuing education to address these issues. © 2006 Centre for Bioethics, IRCM.

Nurses perceptions around providing palliative care for long-term care residents with dementia

Providing palliative care for residents with dementia in long-term care (LTC) settings is problematic due to their declining verbal abilities and related challenges. The goal of this study was to explore nurses' perceptions around providing palliative care for such residents. Using a qualitative descriptive design, data were gathered from focus groups at three LTC facilities. Participants represented all levels of nursing staff. Concepts that emerged from the data were labelled, categorized, and coded in an iterative manner. Nurses appraise residents' general deterioration as a main factor in deciding that a resident is palliative. Nurses often employ creative strategies using limited resources to facilitate care, but are challenged by environmental restrictions and insufficient educational preparation. However, nurses said they do not wish for residents to be transferred to a hospice setting, as they .wish to grieve with residents and their family members. Nurses aim to facilitate a "good death" for residents with dementia, while trying to manage multiple demands and deal with environmental issues. Supportive and educational initiatives are needed for nursing staff and families of dying residents. © 2007 Centre for Bioethics, IRCM.

Reaching common ground:A patient-family-based conceptual framework of quality EOL care

Improvement in the quality of end-of-life (EOL) care is a priority health care issue since serious deficiencies in quality of care have been reported across care settings. Increasing pressure is now focused on Canadian health care organizations to be accountable for the quality of palliative and EOL care delivered. Numerous domains of quality EOL care upon which to create accountability frameworks are now published, with some derived from the patient/family perspective. There is a need to reach common ground on the domains of quality EOL care valued by patients and families in order to develop consistent performance measures and set priorities for health care improvement. This paper describes a meta-synthesis study to develop a common conceptual framework of quality EOL care integrating attributes of quality valued by patients and their families. © 2005 Centre for Bioethics, IRCM.

Clinical Trials Abroad: The Marketable Ethics, Weak Protections and Vulnerable Subjects of EU Law

This chapter explores how the EU is a largely overlooked exporter of normative power through its facilitation and use of clinical trials data produced abroad for the marketing of safe pharmaceuticals at home; a move that helps to foster the growing resort to pharmaceuticals as a fix for public health problems. This is made possible by the EU’s (de)selection of international ethical frameworks in preference to the international technical standards it co-authors with other global regulators. Clinical trials abroad underscore how ethics are contingent and revisable in light of market needs, producing weak protections for the vulnerable subjects of EU law. I argue that these components and effects of the regime are ultimately about that which undergirds, shapes and directs regulatory design. That is, I point to the use, infiltration, perpetuation and extension of market-oriented ideas, values and rationalities into formally non-market domains like biomedical knowledge production and public health. I explain how these are central to efforts at producing and legitimating the EU, its related imagined socio-political order based on a more innovative, profitable and competitive pharmaceutical sector in order to foster economic growth, jobs and prosperity, and with them the project of European integration. ‘Bioethics as risk’ is highlighted as a way to reshape and redirect the regulatory regime in ways that are more consistent with the spirit and letter of the ethical standards (and through them the human rights) the EU claims to uphold.

Food Labels, Autonomy and the Right (Not) to Know

Food labelling has been overlooked in the emerging body of literature concerning the normative dimensions of food and drink policies. In this paper, I argue that arguments normally advanced in bioethics and medical ethics regarding the “right to know” and the “right not to know” can provide useful normative guidelines for critically assessing existing and proposed food labelling regimes. More specifically, I claim that food labelling ought to respect the legitimate interests and the autonomy of both consumers who seek knowledge about their food in order to make informed dietary choices and consumers who prefer to remain ignorant about the contents and effects of their food in order to avoid the emotional and psychological harm, or more simply the loss of enjoyment, which may result from receiving that information.

Governing Public Health: EU Law, Regulation and Biopolitics

This book contributes towards EU studies and the growing discourse on law and public health. It uses the EU’s governance of public health as a lens through which to explore questions of legal competence and its development through policy and concrete techniques, processes and practices, risk and security, human rights and bioethics, accountability and legitimacy, democracy and citizenship, and the nature, essence and ‘future trajectory’ of the European integration project. These issues are explored first, by situating the EU's public health strategy within the overarching architecture of governance and subsequently by examining its operationalisation in relation to the key public health problems of cancer, HIV/AIDS and pandemic planning.

The book argues that the centrality and valorisation of scientific and technical knowledge and expertise in the EU's risk-based governance means that citizen participation in decision-making is largely marginalised and underdeveloped – and that this must change if public health and the quality, accountability and legitimacy of EU governance and its regulation are to be improved. Subsequently the book goes on to argue that the legitimating discourses of ethics and human rights, and the developing notion of EU (supra-)stewardship responsibility, can help to highlight the normative dimensions of governance and its interventions in public health. These discourses and dimensions provide openings and possibilities for citizens to power ‘technologies of participation’ and contribute important supplementary knowledge to decision-making.

Understanding the Patient Experience Through the Power of Film: a Mixed Method Qualitative Research Project

Film is a highly attractive teaching instrument for the study of different terminal diseases, exploring bioethics (Beauchamp and Childress, 2009) and is a preferred medium over traditional lectures (Edmunds, 2013) to provide realistic examples for adult learners. It can tap into ethical issues; facilitate decision-making; and examine underlying issues such as euthanasia; assisted suicide; and professional responsibility. Contrast this with standard means of teaching, such as scenarios- although a useful pedagogic tool, these are limited because students must imagine the clinical scenario. Film can fill that imaginative gap (Volandes, 2007). It can be utilised as an active teaching strategy for a variety of topics in nursing (Edmunds, 2013) providing a unique way to promote active learning in nursing education (Herrman, 2006). The objectives of the study, aim to help pre registration student nurses from each year of study to engage with their role as health care professionals; provide open discussion and debate on how they view the personal experience of illness/disease/disability/death and to reflect on their role and provision of patient care. It is delivered in 3 tiers to provide a range of data for thematic analysis; 1) Film screening followed by a ‘5 minute reaction’ discussion and post screening questionnaire; 2) Pre screening guided activities for reflection and discussion; 3) Focus groups. This project meets identified aims from the UK Professional Standards Framework (UKPSF) by fostering creative and innovative approaches to teaching and learning; facilitating and supporting the design and delivery of continuing education development programmes and activities; and demonstrates professionalism that staff and institutions bring to teaching. Preliminary feedback and themes will be presented.

Analyse des enjeux éthiques attribuables au don d’organes après décès cardiocirculatoire selon l’approche bioéthique par principes

Travail dirigé présenté à la Faculté des sciences infirmières en vue de l'obtention du grade de M. Sc. en Sciences Infirmières option infirmière clinicienne

La légitimité d'une éventuelle application de la thérapie germinale humaine : les aspects juridiques et éthiques

La thérapie germinale est une avenue médicale qui est loin de pouvoir être appliquée de manière sécuritaire et responsable car les connaissances médicales actuelles sont insuffisantes. De surcroît, l'encadrement normatif qui l'entoure est unanime et clame la non-acceptabilité de son application humaine. Certains instruments adoptent une approche rigide en la prohibant formellement, d'autres adoptent une approche flexible en demeurant ouverts à une éventuelle application. Il y a donc divergence quant à la légitimité de cette technique. La médecine moderne doit reposer sur des principes directeurs issus de diverses sources, empruntées au droit et à l'éthique. Les principes retenus pour examiner la légitimité de la thérapie germinale sont tirés, d'une part, des droits et libertés fondamentales: ce sont les principes fondamentaux de dignité, de liberté, d'égalité. D'autre part, ils sont issus des règles d'éthique de la recherche: plus particulièrement le principe de bienfaisance (nonmalfaisance) et celui du respect de la personne. La perspective d'une éventuelle application humaine de la thérapie germinale ne porte pas nécessairement atteinte aux principes fondamentaux, dépendamment du genre d'application qui est envisagé. Une application restreinte, appliquée dans des circonstances particulières et en vue de soulager ou d'éliminer certaines formes de détresses et de souffrances, pourrait être conforme aux principes qui soutiennent les droits et libertés fondamentales. La thérapie germinale soulève des questions éthiques difficiles et parfois inédites, notamment l'extension des risques aux générations futures et l'obligation d'un suivi à long terme pour des descendants qui n'auront pas eux-mêmes donné leur consentement à cette «thérapie». La thérapie germinale est présentement non acceptable mais ne devrait pas faire l'objet d'une prohibition totale.

Encadrement normatif du dépistage par analyse de sérum maternel, une technique de dépistage prénatal

"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"

Internationalisation des services génétiques : Perspectives légales et éthiques

L’internationalisation des services génétiques s’explique à la fois par la rareté de certains troubles génétiques et par le nombre restreint de laboratoires effectuant des tests spécialisés. Par leur nature même, les tests génétiques comportent des risques et doivent faire l’objet d’un contrôle serré. L’absence de contrôle international des laboratoires génétiques soulève d’importantes questions juridiques et éthiques. Le présent mémoire démontre, dans un premier article, les normes d’encadrement des laboratoires génétiques canadiens. Un second article compare des normes d’encadrement des laboratoires génétiques dans quatre pays membres de l’OCDE : la France, les États-Unis, l’Australie et le Royaume-Uni. Dans troisième article, les principaux droits des patients des services génétiques au Canada, aux États-Unis, en Australie et au Royaume-Uni sont comparés. Finalement, un quatrième article analyse les implications éthiques de la coexistence de différentes normes d’encadrement des laboratoires et des droits des patients, dans le contexte actuel d’internationalisation des services génétiques. Cette analyse éthique est effectuée selon trois perspectives reconnues : le principisme, l’utilitarisme et le déontologisme. L’hétérogénéité des normes régissant les laboratoires génétiques soulève des questions éthiques et démontre la nécessité d’ouvrir un dialogue international afin d’uniformiser les normes d’encadrement des laboratoires génétiques.

Exploration sur l'existence et la nature de la bioéthique en Asie

Cette recherche constitue une incursion dans la bioéthique de l’Asie. Elle vise à vérifier s’il existe une approche de la bioéthique spécifique pour l’Asie et, s’il s’avère que tel est le cas, d’identifier les particularités les plus apparentes de la nature de cette ‘bioéthique asiatique’. La recherche a été réalisée à même des sources documentaires constituées d’un corpus d’articles publiés entre 2001 et 2005, dans les versions électroniques de revues scientifiques reconnues. La recherche conclut à l’existence d’une ‘bioéthique asiatique’ qui accorde à certaines valeurs humaines une prédominance spécifique, de même qu’un sens différent qui lui est propre. Le lien, entre la culture et les traditions morales locales d’une part, et l’ordre de prédominance et l’interprétation des valeurs éthiques d’autre part, doit être reconnu et pris en compte pour que la bioéthique soit pertinente et applicable aux personnes touchées par les enjeux évalués en Asie. La recherche identifie également quatre particularités de la ‘bioéthique asiatique’ qui constitue le début d’une tentative pour en cerner la nature : le rapport entre ‘soi’ et les autres, la compassion, l’harmonie, de même qu’une conception spirituelle du monde dont la base est l’interdépendance et l’interconnexion d’un ordre universel entrelacé et participatif.