Daryl Pullman

BackgroundIn 2009, Dr. Paolo Zamboni proposed chronic cerebrospinal venous insufficiency (CCSVI) as a possible cause of multiple sclerosis (MS). Although his theory and the associated treatment (“liberation therapy”) received little more than passing interest in the international scientific and medical communities, his ideas became the source of tremendous public and political tension in Canada. The story moved rapidly from mainstream media to social networking sites. CCSVI and liberation therapy swiftly garnered support among patients and triggered remarkable and relentless advocacy efforts. Policy makers have responded in a variety of ways to the public’s call for action.DiscussionWe present three different perspectives on this evolving story, that of a health journalist who played a key role in the media coverage of this issue, that of a health law and policy scholar who has closely observed the unfolding public policy developments across the country, and that of a medical ethicist who sits on an expert panel convened by the MS Society of Canada and the Canadian Institutes of Health Research to assess the evidence as it emerges.SummaryThis story raises important questions about resource allocation and priority setting in scientific research and science policy. The growing power of social media represents a new level of citizen engagement and advocacy, and emphasizes the importance of open debate about the basis on which such policy choices are made. It also highlights the different ways evidence may be understood, valued and utilized by various stakeholders and further emphasizes calls to improve science communication so as to support balanced and informed decision-making

Newborn bloodspot screening programs are some of the longest running population screening programs internationally. Debate continues regarding the need for parents to give consent to having their child screened. Little attention has been paid to how meanings of consent-related terminology vary among stakeholders and the implications of this for practice. We undertook semi-structured interviews with parents, healthcare professionals and policy decision makers in two Canadian provinces. Conceptions of consent-related terms revolved around seven factors within two broad domains, decision-making and information attainment. Decision-making comprised: parent decision authority; voluntariness; parent engagement with decision-making; and the process of enacting choice. Information ascertainment comprised: professional responsibilities ; parent responsibilities; and the need for discussion and understanding prior to a decision. Our findings indicate that consent-related terms are variously understood, with substantive implications for practice. We suggest that consent procedures should be explained descriptively, regardless of approach, so there are clear indications of what is expected of parents and healthcare professionals. Support systems are required both to meet the educational needs of parents and families and to support healthcare professionals in delivering information in a manner in keeping with parent needs.

Canada and California each introduced legislation to permit medical assistance in dying in June, 2016. Each jurisdiction publishes annual reports on the number of deaths that occurred under their respective legislations in the previous years. The numbers are disturbingly different. In 2021, 486 individuals died under California’s End of Life Option. In the same year 10,064 Canadians died under that country’s Medical Assistance in Dying (MAiD) legislation. California has a slightly larger population than Canada, and while medically assisted deaths as a percentage of total deaths remained virtually unchanged in California from 2020-2021, Canada saw a 30% increase from 2020 to 2021. This essay examines some of the factors propelling Canada down the slippery slope of medically assisted suicide, as well as those that may be keeping California and other US jurisdictions from taking the slide. At a time of increasing pressure in many jurisdictions (both nationally and internationally) to liberalize access to medical assistance in dying, some lessons from this comparative analysis are offered.

The concept of human dignity figures prominently in discussions about medical assistance in dying. Yet the notion of ‘dignity’ is often ambiguous. This paper seeks to clear up some of this ambiguity by distinguishing two different but related conceptions of dignity, the one a fundamentally moral notion (‘Dignity’ — upper case) and the other a more aesthetic conception (‘dignity’ — lower case). The dynamic relationship that exists between the moral notion of ‘Dignity’ and its aesthetic counterpart (‘dignity’) is examined. While a pluralistic society requires both notions, only the objective moral notion (Dignity) is adequate to serve as the foundation of a fundamental legal regime. While any pluralistic society must provide opportunities for the expression of subjective aesthetic notions of dignity, the latter can neither serve as the foundation of a comprehensive public ethic in general, nor can it set the parameters of a public policy on medicalized homicide. Indeed, the unmitigated expansion of a particular notion of ‘dignity’ threatens to expunge the more fundamental conception of Dignity that serves as the foundation of any liberal democratic society.

This article discusses the response of our ethics consultation service to an exceptional request by a patient to have his implantable cardioverter defibrillator removed. Despite assurances that the device had saved his life on at least two occasions, and cautions that without it he would almost certainly suffer a potentially lethal cardiac event within 2 years, the patient would not be swayed. Although the patient was judged to be competent, our protracted consultation process lasted more than 8 months as we consulted, argued with, and otherwise cajoled him to change his mind, all to no avail. Justifying our at times aggressive paternalistic intervention helped us to reflect on the nature of autonomy and the dynamics of the legal, moral, and personal relationships in the clinical decision-making process.

Parmi les nombreux aspects remarquables de l’introduction, en juin 2016, d’une législation permettant l’aide médicale à mourir (AMM) au Canada, on peut citer le rôle central et même dominant que les femmes ont joué pour faire avancer cette législation, et leur influence permanente alors que la loi continue d’être examinée et révisée. Les cas médicaux indexés sur lesquels les tribunaux supérieurs ont délibéré concernent des patientes, et les décisions juridiques des différents tribunaux ont été présidées par des femmes juges. Depuis que la loi est entrée en vigueur au Canada, les femmes ont été parmi les plus virulentes et les plus enthousiastes partisanes de l’élargissement des critères afin de garantir que l’AMM soit plus accessible à un plus grand nombre de Canadiens. Dans cet article, j’explique comment la voix des femmes dans ce débat n’est pas la « voix différente » du féminisme de la deuxième vague, d’abord exprimée par Carol Gilligan, puis adaptée et développée dans la littérature à l’éthique des soins et l’éthique relationnelle, mais plutôt la voix très familière de l’éthique de l’autonomie personnelle, des droits individuels et de la justice, que les critiques féministes ont longtemps décrié comme inadéquate pour articuler une morale sociale globale. Je plaide pour la nécessité de réaffirmer la voix différente de l’éthique relationnelle et de l’éthique des soins dans notre discussion actuelle sur l’AMM.

Inasmuch as unmitigated pain and suffering areoften thought to rob human beings of theirdignity, physicians and other care providersincur a special duty to relieve pain andsuffering when they encounter it. When pain andsuffering cannot be controlled it is sometimesthought that human dignity is compromised.Death, it is sometimes argued, would bepreferred to a life without dignity.Reasoning such as this trades on certainpreconceptions of the nature of pain andsuffering, and of their relationships todignity. The purpose of this paper is to laybare these preconceptions. The duties torelieve pain and suffering are clearly mattersof moral obligation, as is the duty to respondappropriately to the dignity of other persons.However, it is argued that our understanding ofthe phenomena of pain and suffering and theirrelationships to human dignity will be expandedwhen we explore the aesthetic dimensions ofthese various concepts. On the view presentedhere the life worth living is both morally goodand aesthetically beautiful. Appropriate``suffering with'''' another can help to maintainand restore the dignity of the relationshipsinvolved, even as it preserves and enhances thedignity of patient and caregiver alike.

Historically the primary role of the Institutional Review Board (IRB) has been "to assure, both in advance and by periodic review, that appropriate steps are taken to protect the rights and welfare of humans participating as subjects in research" (U.S. FDA, 1996). However, there is much to suggest that IRBs have been unable to fulfil this mandate, particularly in regard to the matter of informed consent. Part of the problem in this regard is that the competing interests of other stakeholders often undermine the IRB's capacity to serve the best interests of research subjects. This paper proposes an alternative view of the role of the IRB. It begins by treating the interests of other stakeholders as legitimate matters of concern for IRBs. Hence the process established to review and monitor human research should be treated as an exercise in social justice in which the interests of all legitimate stakeholders must be represented and considered. A variation of Rawls' (1971) heuristic "the veil of ignorance" is employed to explore the dynamic relationship between knowledge and interests that ensues when the role of the IRB is characterized in this manner. Inadequacies in the informed consent process are taken as illustrative of the inability of IRBs as they are presently construed to attend to the interests of research subjects. The major normative implication of the analysis offered here is that the role of the IRB must be expanded to include the granting of a provisional proxy consent on behalf of prospective research subjects. This provision is necessary, it is argued, if the interests of research subjects are to be fairly assessed by IRBs as a matter of social justice. It is necessary as well to ensure that an adequate standard of informed consent is attained. Somewhat paradoxically it is argued competing sets of interests the IRB must serve, rather than as the primary concern of the IRB.

This paper explores the problem of universalism and particularism in contemporary ethics, and its relationship to Christian bioethics in particular. An ethic of human dignity is outlined, which, it is argued, constrains moral discourse in the broad sense – thus meeting the demands of universalism – but which is at the same time amenable to a variety of particularist interpretations – thus acknowledging the current shift toward historicism, traditionalism, and culture. The particularist interpretations that are of central concern here are those provided by historic Christianity. The eventual goal is to indicate how a Christian conception of human dignity can have universal normative relevance both as a standard against which to assess competing particularist conceptions, and as a practical guide for everyday living. A Christian conception of dignity will in turn have significant implications when addressing contemporary issues in bioethics. These are ambitious goals, and a full explication of the ideas presented will not be possible in this context. Nevertheless, there is value in getting a bird's-eye view of the landscape before one goes about scaling the mountains and exploring the valleys. The present essay is intended as a general geography of the moral terrain in which an ethic of dignity in general, and a Christian perspective on dignity in particular, can provide normative guidance.

Le concept de dignité humaine occupe une place prépondérante dans les débats sur l’aide médicale à mourir. Pourtant, la notion de « dignité » est souvent ambiguë. Cet article vise à clarifier une partie de cette ambiguïté en distinguant deux conceptions différentes mais liées de la dignité, l’une étant une notion fondamentalement morale (« Dignité » — majuscule) et l’autre une conception plus esthétique (« dignité » — minuscule). La relation dynamique qui existe entre la notion morale de « Dignité » et son pendant esthétique (« dignité ») est examinée. Si une société pluraliste a besoin des deux notions, seule la notion morale objective (Dignité) est adéquate pour servir de fondement à un régime juridique fondamental. Si toute société pluraliste doit offrir des possibilités d’expression des notions esthétiques subjectives de dignité, ces dernières ne peuvent ni servir de fondement à une éthique publique globale en général, ni définir les paramètres d’une politique publique en matière d’homicide médicalisé. En effet, l’expansion sans limite d’une notion particulière de « dignité » menace d’effacer la conception plus fondamentale de la Dignité qui sert de fondement à toute société démocratique libérale.

The author examines fundamental problems involved in teaching applied ethics in the educational environment of contemporary university culture. American universities are increasingly turning away from liberal arts education and focusing their efforts on constructing more professionalized degrees and programs. As a result, the education process has become increasingly commodified and ethics courses in universities have been further removed from the liberal arts project of moral development in the classroom. The author argues that ethicists should work to reframe the project of moral education if they hope to retain a central role in the process of teaching ethics. The author suggests a growth model to be installed in the undergraduate curriculum that would reacquaint students with the aims and benefits of learning ethical and moral philosophy.

BackgroundWhile genomic data sharing can facilitate important health research and discovery benefits, these must be balanced against potential privacy risks and harms to individuals. Understanding public attitudes and perspectives on data sharing is important given these potential risks and to inform genomic research and policy that aligns with public preferences and needs.MethodsA cross sectional online survey measured attitudes towards genomic data sharing among members of the general public in an Eastern Canadian province.ResultsResults showed a moderate comfort level with sharing genomic data, usually into restricted scientific databases with controlled access. Much lower comfort levels were observed for sharing data into open or publicly accessible databases. While respondents largely approved of sharing genomic data for health research permitted by a research ethics board, many general public members were concerned with who would have access to their data, with higher rates of approval for access from clinical or academic actors, but much more limited approval of access from commercial entities or governments. Prior knowledge about sequencing and about research ethics boards were both related to data sharing attitudes.ConclusionsWith evolving regulations and guidelines for genomics research and data sharing, it is important to consider the perspectives of participants most impacted by these changes. Participant information materials and informed consent documents must be explicit about the safeguards in place to protect genomic data and the policies governing the sharing of data. Increased public awareness of the role of research ethics boards and of the need for genomic data sharing more broadly is also needed.

Narrative theory is a dynamic and evolving field of inquiry that has made tremendous inroads in the medical humanities over the past 40 years. Numerous authors have popularized the idea that “thinking narratively” can produce important insights about the illness experience for physician and patient alike. This paper draws on aspects of narrative theory to emphasize the moral responsibilities that arise when we step into another person's life narrative, becoming a character in her or his story. This has especially significant ethical implications for the physician–patient encounter in that each character in this shared story experiences time somewhat differently. This gives rise to the notion of “slow motion ethics” and a somewhat unique perspective on the moral responsibilities clinicians bear toward their patients.