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Enjeux éthiques à l’utilisation éventuelle de prédicteurs des préférences du patient pour soutenir la prise de décision substituée

Gina Bravo and Louise Bernier
In 2010, Annette Rid and David Wendler proposed the development of patient preference predictors (PPPs) to guide care decisions for incapacitated individuals whose wishes are unknown. A PPP would be built using observed correlations between care preferences and the sociodemographic characteristics of survey respondents. It would then be used to predict a patient’s unknown wishes based on their own characteristics. A PPP could improve the ability to provide incapacitated patients with care that aligns with their preferences, while also alleviating the distress experienced by many surrogate decision-makers due to uncertainty about the patient’s wishes. Despite these advantages, numerous objections to PPPs have been raised over the past 15 years. We sought to better understand the ethical debate surrounding these decision-support tools in order to determine whether their development is appropriate. Drawing on a conceptual model of decision-making in the context of dementia, we analyzed 65 publications addressing ethical issues associated with PPPs. The identified issues were categorized according to the ethical principles to which they relate. We conclude in favour of developing PPPs, provided they are used to support rather than replace human decision-making. We then highlight the need to assess their social acceptability and real-world performance. Finally, we propose measures that could reduce the risks associated with their use and strengthen users’ trust.

“The Death of Medicine as an Art of Humanity”. Multi-Level Ethical Implications of Integrating Mortality Prediction Algorithms in End-of-Life Care

Jad Brake, Kelly Newton-Mari, Alice Virani and Anita Ho
Artificial intelligence-powered mortality predictive algorithms (MPAs) have been developed to predict a patient’s life expectancy, with the hope that algorithmic outputs will help providers to find an optimal time to initiate end-of-life (EoL) conversations to enhance goal-concordant care. This qualitative research, conducted in British Columbia (BC), Canada, examines health care providers’ perspectives on ethical implications of using AI-powered MPAs in EoL care. This paper discusses how MPAs raise familiar but also new multi-level ethical issues regarding the use of predictive analytics in clinical medicine. These ethical concerns and considerations span four levels: individual, professional, organizational, and societal. Our analysis of these interconnected levels reveals three key and overlapping insights: 1) the need to redefine clinicians’ roles within a changing techno-therapeutic landscape; 2) the challenge of navigating EoL hope in the context of emerging predictive tools; and 3) the importance of fostering a balanced and holistic approach to EoL care amid rapid advances in AI. By uncovering the complexity of ethical implications of using MPAs in the sensitive and vulnerable context of the final stages of a person’s life, this work provides a multi-level framework that can inform best practices. It also underscores a holistic view of care and stresses the need for ethical frameworks, guidelines, interdisciplinary collaboration and education to inform the design and implementation of MPAs in EoL care.

Disordered Wrongdoing, Freedom, and Compassion

Benjamin Campbell
Disordered wrongdoing describes behaviour that is causally connected to a wrongdoer’s mental disorder. A common attitude toward such wrongdoing is that the disorder is an “explanation” but not an “excuse” Mental disorders, though, are often thought to be conditions that limit one’s freedom to choose alternative courses of action. These sorts of constraints on freedom are taken in ethical philosophy and democratic judicial systems to strongly reduce one’s moral responsibility for a wrong act, if not remove it altogether in many cases. Rather than focusing on this legal interpretation of responsibility, I will focus on the “holistic” ethical context of how we treat disordered wrongdoers: our ethical comportment. I argue that our basic attitude toward disordered wrongdoers, on account of these constraints in freedom, should be compassionate. I explicitly focus on the meaning of compassion as it relates to a moral obligation to be understanding toward the reasons disordered wrongdoers have for their actions.

The Ethical and Policy Implications of Epigenetic Research: An Analysis of the TCPS 2

Andrea Gretchev, Heide S. Temples, Deborah Dewey, Gillian England-Mason, Luigi Boccuto and Vivian Haley-Zitlin
Epigenetics is the study of potentially heritable molecular modifications to DNA and chromatin, which can alter the regulation of gene expression. Epigenetic research can potentially inform new risk assessment, diagnosis, and treatment approaches. Purpose: This analysis seeks to identify whether Canada’s Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans 2 (TCPS 2) provides comprehensive protection for the conduct of epigenetic research. These findings could inform policy amendments and future policy development that is inclusive of epigenetics and emerging areas of genomic technology. Additionally, this information benefits individuals or groups conducting epigenetic research. Background: Epigenetic research poses nuanced and distinct ethical challenges that differ from those in other areas of genomic research. This paper applies the Walt and Gilson policy analysis triangle (context, content, process, and actors) to evaluate the adequacy of the TCPS 2 in providing protection for research ethics that extends to epigenetics. Ethical and Policy Analysis: The TCPS 2 offers extensive guidance for genetics research, which is strongly applicable and extends appropriately to epigenetic-specific research. However, subsequent revisions would benefit from modifying the definition of ‘genetics’ to use the more inclusive term ‘genomics’ and explicitly extending it to other genomic research approaches, including epigenetics. Furthermore, broad consent should be transparent about the possibility that data may be used for research involving genomic technologies different from those in the original study. Conclusion: The TCPS 2 provides a strong foundation for ethical epigenetics research. However, minor amendments would provide more comprehensive protection for participants and researchers, ensuring the policy remains relevant and adequate for this rapidly evolving field.

Ethical Dimensions of Artificial Intelligence Chatbots Use in Rare Disease Diagnosis: A Scoping Review

Alexia Bélisle, Marie-Océane Lavoie, Frédéric Banville and Hazar Haidar
Introduction: A rare disease is a health condition affecting a small percentage of the population, characterized by its low prevalence and the potential to result in chronic disabilities. Symptoms of these diseases may overlap with those of more prevalent conditions, complicating the diagnostic process. Additionally, many rare diseases are genetically inherited, and their diagnosis often requires specialized medical expertise and advanced diagnostic tools, highlighting the need for targeted approaches in healthcare. Consequently, the integration of artificial intelligence (AI) tools, including chatbots, presents a promising opportunity to support diagnostic processes in healthcare. However, their use raises ethical concerns, particularly related to data privacy, patient confidentiality, and the transparency of AI-driven recommendations. Objective: This study explores the ethical issues arising from the use of AI chatbots in rare disease diagnosis. Method: We conducted a scoping review related to ethical issues raised using chatbots in rare diseases diagnosis, searching databases and reference lists between January 1, 2010, and February 10, 2024. Results: Following screening process, six studies were included in the review. Data were grouped into four themes: 1) trust in AI chatbot; 2) humanization/dehumanization of AI; 3) data security and commercialization; and 4) psychometric considerations. Discussion: AI chatbots hold promise for diagnosing rare diseases, but challenges like data scarcity, diagnostic accuracy, and trust remain. Addressing these issues, particularly through improved data representativeness and enhanced collaboration with healthcare professionals, is crucial for the effective integration of AI in clinical practice. Future research should focus on overcoming these limitations to ensure AI can serve as a reliable decision-support tool in rare disease diagnosis.

Considerations for a Resource Allocation Framework for Intensive Care Units and Acute Care: A Qualitative Study Exploring the Experiences of Equity-Deserving Groups During the COVID-19 Demand Surge and Triage-Avoidant Strategies

Taylor Shorting, Jaya Rastogi, Cécile M. Bensimon, Alice Virani, Maxwell J. Smith, Simon Oczkowski, Dianne Godkin, Marika Warren, Sabira Valiani, Judy King, James Downar and Sarina R. Isenberg
During COVID-19, most intensive care units (ICUs) in Canada implemented strategies to manage a surge in demand for critical care to avoid turning people away, termed “triage-avoidant strategies.” These strategies, including redeploying non-ICU staff to the ICU to increase patient capacity, and transferring people over long distances to available beds, may have caused negative consequences for patients, healthcare staff, and equity-deserving groups. This study explores the perspectives of equity-deserving groups and organizations on triage-avoidant strategies during COVID-19, examined organization-specific responses, and identified system-level recommendations to improve equity, access, and preparedness. A qualitative descriptive study was conducted between July and December 2023 across five provinces in Canada. Participants, including staff from organizations serving equity-deserving groups, as well as government and healthcare representatives, were recruited through professional networks and snowball sampling. A semi-structured interview guide was used to elicit perspectives, which were then analyzed inductively using thematic analysis. 23 individuals from Ontario (n=12), British Columbia (n=4), Saskatchewan (n=4), Nova Scotia (n=2) and New Brunswick (n=1) participated. 15 participants (65%) identified as persons of colour or among equity-deserving groups; 13 (57%) participants worked within organizations representing decision-makers, clinicians, and/or equity-deserving groups. We identified three themes: 1) Triage-avoidant strategies were perceived to have disproportionately harmful effects on equity-deserving groups and healthcare providers; 2) organizations acted to mitigate effects of triage-avoidant strategies; and 3) various system-level actions could help mitigate the perceived effects of these strategies in future surges in demand. This study contributes to the literature by incorporating perspectives of representatives from diverse organizations and equity-deserving groups on how triage-avoidant strategies disproportionately harmed the populations they serve. Our findings can inform the development/implementation of triage-avoidant strategies that mitigate the perceived harmful effects on decision-makers, clinicians, and equity-deserving groups, while promoting equitable care.

Exploring Learners’ Experiences with Clinical Ethics Consultations: A Narrative Reflection on the Impact and Role of Emotions

Téa Christopoulos, Oluwaseun Sobode, Megan Bailey, Dylan McKibbon, Thomas Milovac, Sam Moshiri and Jessie Van Leeve
As clinical ethics learners, we have observed ethics consultations and have experienced an array of emotional responses as a result of these consultations, particularly surrounding topics pertaining to end-of-life decision-making. While there is extensive literature on the role and nature of emotions for many frontline healthcare providers, such as nurses and physicians, limited research exists on the emotional experiences of clinical ethicists and clinical ethics learners. We maintain that understanding these emotional experiences can deepen our understanding of the role and practice of clinical ethicists, especially given the challenging and values-laden healthcare contexts in which ethics consultations often occur. This research can also inform current and future ethics education to aid in the development of quality-driven training programs for future ethicists, such as bioethical simulation labs. This paper sought the voluntary contributions of seven clinical ethics learners, who provided a narrative account of their experiences with clinical ethics consultations as a means to identify key themes related to emotional responses to ethics consultations.

Reconceptualizing Vulnerability: How Layers of Vulnerability Can Help Us Better Understand Medical Assistance in Dying

Alessandro Manduca-Barone, Julia Brassolotto and Duff Waring
Medical assistance in dying (MAiD) was legalized in Canada in 2016. Since then, eligibility criteria have expanded through court challenges and legislation. During this expansion, there have been multiple reported cases that revealed individuals being offered or accessing MAiD due to a lack of other supports that may have otherwise ameliorated their suffering. As such, there have been renewed conversations about protecting the vulnerable. Here, we challenge the traditional subpopulation conception of vulnerability that treats persons as belonging to certain predefined subgroups. Instead, we support the more relational and contextual model of vulnerability as proposed by feminist bioethicist Florencia Luna. This conception views vulnerability as consisting of overlapping layers with cascading effects. We argue that such an approach is preferable both conceptually and practically and we apply it within the context of MAiD. This more nuanced approach to vulnerability can provide insight and guidance to governments and policy makers. Specifically, we consider three potential policy and practice recommendations that acknowledge and attempt to address the multiple ways in which patients might be rendered vulnerable: 1) an amendment to the Federal Government’s language about “protecting the vulnerable” in MAiD legislation; 2) enhanced MAiD assessments that better screen for social determinants of vulnerability and use a multidisciplinary approach to address them; and 3) establishing an oversight body consisting of members from multiple stakeholder groups with special expertise or experience relating to some of the most relevant sources of vulnerability.

Influencers and Unproven Health Claims: Curbing Misleading Promotion in the United States and Canada

Alessandro R Marcon, Blake Murdoch and Timothy Caulfield
The rise of social media has enabled influencers to shape public health discourse and promote unproven health products and interventions. Here we examine practical and regulatory challenges and opportunities relating to influencer-driven health marketing in the United States and Canada. Despite existing legal prohibitions on misleading advertising linked directly to influencers by official regulatory guidance, enforcement remains inadequate. Current regulatory frameworks permit vague health claims. Moreover, oversight differs between licensed health professional influencers and layperson influencers. Social media platforms are complicit in and/or indifferent to the amplification of misinformation, as it drives engagement and furthers their profit motives. To address misleading influencer health marketing, both “hard” and “soft” strategies are considered, including international policy coordination and algorithmic solutions that reduce the visibility of misleading content. One key challenge remains how to engender the willing participation of powerful multinational corporations with political and lobbying influence. We raise the potential usefulness of carefully crafted automated enforcement mechanisms, including AI-driven content monitoring systems and automated notice-and-takedown procedures, while simultaneously advocating for a balanced approach that respects freedom of expression. Updated, scalable, and equitable regulations and enforcement mechanisms are needed to protect consumers, foster evidence-based health communication, and restore accountability in digital health marketing.

Revisiting the Confucian Objections to Beauchamp and Childress’ Principle of Respect for Autonomy

Charlene Tan and Ruth Neo
A persistent Confucian critique of Beauchamp and Childress’ principle of respect for autonomy is that the principle exalts individual autonomy and ignores family-based medical decision-making. This article defends the principle by questioning its individualistic underpinnings and arguing that it is compatible with family-based medical decision-making through specification.

Discrimination and Socially Embedded Suffering: Extending Grant’s Critique of Track 2 MAID to Mental Illness

Nicholas Dunn
In her paper entitled “Why Track 2 MAiD is Discriminatory,” Isabel Grant offers a compelling disability justice-based critique of Canada’s evolving MAID regime. She argues that Track 2 MAID, which concerns persons who are not approaching the end of life, is premised on a medical model of disability that obscures structural ableism and therefore discriminates against persons with disabilities. In this commentary, I show that Grant’s analysis becomes even more urgent when extended to current debates about the expansion of MAID eligibility for individuals with mental illness as the sole underlying medical condition.

Dual-Role Conflict: Healthcare Provider or Medical Power of Attorney

Maya Nortjé, Maureen Pontarelli, Ian Doherty and Nico Nortjé
This case looks at the tension created when a family member, who is a medical provider, is also the decision-maker for a dying parent. This case study illustrates the ethics of professional responsibilities and dual-role conflicts.

The Influence of Trauma on End-of-Life Decision-Making

Maya Nortjé, Maureen Pontarelli, Ian Doherty, Karen Terrell, Carla Robles and Nico Nortjé
This case study illustrates how principles and approaches from trauma-informed care can be used in a setting where a family is requesting the medical team not to share bad news out of fear of re-traumatization. A trauma-informed ethics consultation acknowledges how unresolved trauma may obstruct open and ethical communication. Effective facilitation of ethical dialogue is only possible once underlying trauma affecting communication is acknowledged and addressed.

When a Surrogate Knows What to Do, but Can’t Do It

Victor Esteban Grado, Maureen Pontarelli, Ian Doherty and Nico Nortjé
A surrogate or substitute decision-maker is tasked with making medical choices that the patient would make for themselves. However, most of the time the surrogate decision-maker is also emotionally involved with the patient, which makes the execution of these choices very difficult. This case study looks at a wife’s struggle to honour her husband’s wishes, because she did not want to lose him.

When Good Intentions Are Not Enough: Ethical Tensions in Rare Disease Care in Indonesia

Ardita Hartanti Pramudani, Ika Septiana Eryani, Agustini Utari and Tri Indah Winarni
This case study examines a child with a rare genetic condition in Indonesia whose access to care depended on community mobilization in the context of limited institutional support, revealing a tension between the principles of beneficence and justice in resource-constrained health systems. While acts of beneficence are morally commendable, we argue that justice should take priority by motivating equitable, institutional solutions that avoid reliance on ad hoc community goodwill and prevent unequal access to care among patients with comparable needs.

Shared Responsibility After Referral: Ethical Challenges in Preventing Harm

Ohad Avny, Mayer Brezis and Anat Tsur
The case illustrates how fragmented communication and blurred accountability between primary and specialty care can compromise the principles of beneficence and nonmaleficence, resulting in preventable harm for patients. To prevent such outcomes, healthcare providers should collaboratively determine who holds primary responsibility for the patient’s care at each stage of the referral process.

Chronique du cinéma 13 : Frankenstein et la condition humaine

Jacques Quintin
A review of the film Frankenstein by director Guillermo del Toro. The film revisits the myth of the human being who fancies himself as God, the creator of the universe and human life. However, despite Dr Frankenstein’s good intentions – to offer immortality or perfect health to humankind – his creature, in this case a monster, turns against its creator to complain about its immortal condition. What awaits it is not happiness, but suffering that is constantly renewed. This film demonstrates the need for in-depth reflection on the scope of science and the meaning of human life.

When You Are Hurt, Does It Bleed?

Christopher Agustin
Pain, whether physical or emotional, reflects the struggles that shape human existence. Wounds and scars symbolize suffering, healing, and resilience, revealing how adversity contributes to personal growth and self-discovery. Despite life’s hardships, hope and strength emerge, allowing individuals to move forward with greater compassion and understanding.

Regarder vers le passé pour anticiper l’avenir de l’éthique de la santé des populations : conclusions tirées de l’expérience du Réseau de recherche en santé des populations du Québec

Matthew Hunt, Tzvetelina Tzoneva, Vincent Couture and Alexandra Larocque
This article takes a critical look at the evolution of public health ethics, the progress made, and the directions to be taken, drawing on the experiences of the Ethics Axis of the Quebec Population Health Research Network (RRSPQ) from its inception in 2009 until its dissolution in early 2025. The article consists of three parts. First, the authors describe developments in the field of public health ethics, particularly in the Quebec context, based on the key topics prioritized by the Ethics Axis and its members. Next, following an analysis of the available literature, they identify several current research priorities. Finally, the authors closely analyze knowledge transfer and capacity-building activities in this field of research and practice. Given the importance of interdisciplinary approaches, they suggest developing new training opportunities that involve experiential and immersive learning, offering diverse perspectives and varied disciplinary approaches.

Epistemic and Linguistic Injustice in Research: Sharing Experiential Knowledge / Injustices épistémiques et linguistiques en recherche : partage de savoirs expérientiels

Marie-Josée Drolet, Valérie Lafond and Louis Pierre Côté
This article discusses a rarely addressed yet pivotal issue in academia: the epistemic hegemony of the English language and its detrimental effects on non-English-speaking researchers. Drawing on existing literature, ethical theoretical concepts, and our own experiential knowledge, we illuminate some of the epistemic and linguistic injustices embedded in academic systems. This linguistic domination undermines scholarly credibility, perpetuates exclusion, and affects knowledge production. We integrate thought experiments based on personal experiences to illustrate how this linguistic hegemony penalizes those compelled to write, present, and publish in a language other than their mother tongue. Such practices heighten feelings of shame, erode self-confidence, and restrict access to funding, honours, and reputable publication venues. We employ Stephanie Nixon’s coin model to underscore how unearned privileges are conferred on native English speakers while non-English-speaking academics face myriad invisible barriers. Although English may serve as a unifying medium, its disproportionate dominance curtails the diversity of perspectives needed to address pressing global crises. Linguistic and epistemic injustices harm not only individual researchers’ careers but also the collective scientific endeavour by excluding vast bodies of knowledge published or shared in other languages. Building on Amano et al., we advocate for multilingual dissemination, conscious engagement with non-English literature, and recognition of non-English-speaking researchers’ contributions. There needs to be broader dialogues aimed at upholding and celebrating linguistic and cultural diversity in research.

Mieux utiliser nos ressources hospitalières : pour une éducation citoyenne à la santé ?

André-Anne Racine-Prud’homme
Too many Canadians find themselves in medical situations that are made worse by delays in seeking treatment. Could public health education help to reduce the frequency of such incidents and improve the relationship between patients and healthcare providers?