Background: Informed consent forms (ICFs) are a mandatory prerequisite for participating in clinical trials. In pediatric studies, the ICF is generally signed by the child’s parents. The ICFs designed for clinical trials are often lengthy and complex to understand. We conducted this study to determine if a simplified ICF would improve parental understanding compared to a standard ICF. Methods: A single-centre, single-blind, randomized controlled trial featuring two fictitious ICFs took place in a tertiary Canadian mother and child university hospital. Parents of hospitalized children were assigned to read either a standard or simplified ICF. Parental comprehension was measured using the Modular Informed Consent Comprehension Assessment (MICCA) questionnaire. The primary outcome of this study was to assess the proportion of parents with a MICCA score of 75% or above. Results: One hundred and fifty participants answered the study questionnaires. The primary endpoint was reached by 55.7% of the participants who read the simplified ICF compared to 46.2% in the standard ICF group (p=0.303). The mean MICCA scores were 17.87 and 17.75 points, respectively (p=0.847). Themes that were poorly understood by both groups were the study procedures, the adverse effects, the other available treatment options as well as the main benefits and purpose of the study. Conclusion: This single centre, single-blind, randomized controlled study showed that the comprehension was similar between a simplified and a standard ICF. This suggests that using simplified ICFs does not improve nor impair parental comprehension. Therefore, a simplified ICF should be used as frequently as possible in pediatric research projects.
There is no more compelling a current issue than critically examining the topics of suicide prevention and assisted suicide. That has been exceptionally accomplished by Alexandre Baril in his book Undoing Suicidism: A Trans, Queer, Crip Approach to Rethinking (Assisted) Suicide (2023). While it is unquestionably a major contribution to the field of suicide prevention and assisted dying, remarkably explored in a single book, the author’s thorough and critical reasoning appears to fall short where he explores existing and evolving voluntary assisted suicide approaches in the second part of his revolutionary work.
In 2021, in response to the Superior Court of Quebec’s decision in Truchon v. Canada, the Canadian Parliament amended the Criminal Code to allow Medical Assistance in Dying (MAiD) for some people who don’t have a “reasonably foreseeable natural death.” Debate rages over this amendment. In particular, some academics and activists argue that it should be repealed because it discriminates against disabled people. In 2024, these arguments appeared in a Canadian court proceeding; two disabled individuals and four disability rights organizations filed a lawsuit in the Ontario Superior Court of Justice, challenging the amendment. In this paper, I critically analyze the harm-centric arguments in the applicants’ notice of application (which crystallizes the broader opposition to the amendment). In doing so, I draw on analysis from both sides of the ethical debate over the amendment. Ultimately, I conclude that the applicants’ arguments — and those from other opponents of the amendment — don’t succeed. Some of my recurring objections include that the alleged harmful effects of the amendment are either 1) harmful only if the applicants’ dubious ethical assumptions are true, 2) not attributable to the amendment, or 3) nonexistent, negligible, or unlikely. In defence of the amendment, I discuss how it respects people’s autonomy and avoids instrumentalization.
Research ethics has historically focused on the “laboratory researcher,” neglecting fundamental aspects of academic life, such as knowledge transfer, bibliometric dynamics, and structural inequalities. These issues profoundly influence academic trajectories, particularly in a context where interdisciplinarity and the breaking down of barriers between faculties have become academic and societal imperatives. This text explores a latent force present in academic institutions capable of transcending traditional divisions to promote better integration of skills, knowledge and practices, first within its institution, but also more broadly in society. We introduce the Idoine Collective as an organisational model for studying and experimenting with mechanisms that meet the needs of knowledge transfer, while investigating the institutional structures that hinder interdisciplinarity and the promotion of students’ and researchers’ skills. The Idoine Collective is considered as a subject of study in procedural ethics and governance, allowing us to analyse how alternative organisational frameworks can support science in action, break down barriers between disciplines and strengthen the link between universities and society. By examining these dynamics, this texte invites us to rethink the place of students and researchers in the production and dissemination of knowledge, while highlighting the structural tensions that remain in academia.
Despite its legalization, the ethics of medical assistance in dying (MAiD) remain contentious due to an evolving eligibility criteria goalpost and the subsequent implications for individuals suffering from non-terminal conditions, namely mental illness. Given the expanding availability of MAiD, comparing societal narratives with those of physicians is important to inform the development of health policies and laws that reflect a variety of stakeholder values and concerns. This paper presents a critical qualitative analysis of two types of data: 1) interview responses from Canadian physicians regarding the practice of MAiD, and 2) Canadian digital news media, with the goal of determining areas of convergence and divergence in the narratives of both source types. This analysis captured four overarching themes: 1) autonomy and choice, 2) “dying with dignity” and harm reduction, 3) paternalism and vulnerability, and 4) the medicalization of suffering. In general, while both physicians and other stakeholders express a commitment to the principle of patient autonomy, all parties raised concerns about systemic inequities and the risk of MAiD being used as a proxy for addressing broader social determinants of health.
Les avancées médico-technologiques ont amélioré la survie des enfants atteints de maladies graves, complexes et incurables. Toutefois, ces progrès s’accompagnent d’une complexification des décisions relatives aux soins médicaux pour ses enfants, dont les parents ou tuteurs sont généralement les décideurs principaux. Dans cet article, nous proposons de repenser l’assentiment des enfants mineurs de moins de 14 ans en intégrant l’approche écosystémique de Bronfenbrenner. Cette théorie permet d’examiner l’influence des contextes familial, social et institutionnel sur leur capacité à participer aux décisions médicales. Nous concluons qu’une prise en compte plus large de ces facteurs liés à l’assentiment des enfants pourrait transformer le processus décisionnel d’une approche plutôt dialogique que dichotomique, laissant une place à l’enfant pour participer activement aux décisions médicales qui le concernent.
This study aims to empirically document the perceptions and experiences of diverse humanitarian actors, including humanitarian workers, NGO members, and humanitarian ethics experts, regarding ethical issues in humanitarian work. We conducted 15 interviews with participants, from which we extracted four categories of ethical issues: value-based tensions, resource scarcity, political considerations, and neocolonialism. The category of value-based tensions encompasses ethical issues involving intercultural conflicts, balancing care with security and collaboration, addressing emergency versus long-term care, and navigating ethical silence. Resource scarcity includes issues such as a lack of financial and material resources, insufficient preparation, and inadequate ethical resources, all of which contributing to operational difficulties. The category of political considerations highlights ethical issues related to NGO operations, including the disconnect between organizational decisions and field practices, the unequal treatment of local workers and expatriates, and instances of authoritarianism, racism, and corruption within NGOs and their partners. Ethical issues pertaining to neocolonialism highlights how Western ideologies and power dynamics persist in humanitarian organizations, manifesting in issues like paternalism, control of decision-making by white individuals, and power imbalances between NGOs and local governments, perpetuating a sense of Western superiority over non-white individuals. As well, having identified ethical silence and neocolonialism as key ethical issues in this study (i.e., undiscussed in prior empirical literature reviewed), we propose a reflection on structural injustices and the systemic inequities in humanitarian work.
This paper critically examines the ethical foundations for minimizing suffering at the end of life. The reduction of suffering is a major concern in the ethical discourse of end-of-life care. Some thinkers privilege minimizing unwanted and unnecessary suffering at the end of life as much as possible. And yet, many others consider minimizing suffering an insufficient or risky justification for decision-making at the end of life. The desire to minimize suffering is considered equivalent to or entirely contained within utilitarianism or, in bioethics, the principle of beneficence. Here, I argue that it is a mistake to ground the desire to minimize suffering at the end of life in utilitarianism or beneficence, since these are morally symmetrical, and the commitment to minimize suffering is morally asymmetrical. As an alternative, I propose and develop the doctrine of least avoidable suffering (DLAS), which is grounded in negative utilitarianism — aka morally asymmetrical consequentialism. I assess DLAS against a series of end-of-life treatments and demonstrate that it aligns well with the ethical commitments of those who desire to minimize suffering at the end of life. I conclude that DLAS offers people, institutions, and physicians a formal, systematized, and defensible theoretical basis for the desire to minimize suffering at the end of life.
Commentary on the film Crimes of the Future by Canadian director David Cronenberg. The film depicts a dystopian universe in which the survival of the human species poses major challenges. Faced with a toxic and polluted world, humans are surreptitiously transforming into a new species capable of surviving in a degraded environment. This film production questions the relationship between nature and culture and addresses the limits of the contemporary human condition.
In 2022, the Colombian Constitutional Court mandated the removal of the 12-month deferral for blood donation for potential male donors who reported having had sexual relations with other men in the past year in the national guidelines for blood donor selection, aiming to combat stigma and discrimination against diverse sex-gender identities. This article explores the complex dynamics of this mandate, and examines the tension between private moral values, like self-determination and freedom of expression, with public values, such as non-maleficence, equality and vulnerability approach. The analysis delves into the challenges of Colombia’s hemovigilance system, the epidemiological patterns of HIV, and the lack of supporting studies for these guideline changes. Structural and logistical constraints in minimizing transfusion risks are highlighted, emphasizing the need for improved safety measures. The implications of reduced deferral times for high-risk groups without adequate testing protocols are also addressed. The necessity for national studies to determine the actual risk posed by different populations is underscored, advocating for robust safety measures, including universal nucleic acid testing (NAT), to protect both donors and recipients. Balancing the elimination of discrimination with enhanced blood safety practices is crucial to ensure non-maleficence and equity for all stakeholders involved in the blood donation process in Colombia. The article emphasizes the importance of protecting individuals and communities at greater risk of defenselessness and insecurity within the evolving landscape of blood donation protocols.
Clinical ethics is largely about understanding concrete moral situations and supporting meaningful discussion on these to identify appropriate resolutions. However, concepts and methods used to describe cases (e.g., dilemmas, situations, stories) vary between authors and case analysis methods. We undertook a non-exhaustive literature review - inspired by McDougall's critical interpretive review method - to identify a range of influential ideas on how to describe clinical ethics cases and the methods recommended to understand these cases. We identified nine families of case analysis methods, which vary considerably with respect to the basic description of cases, the strategies recommended to understand cases, and additional features that should be considered (e.g., contexts, social and power dynamics, emotions). As a collective of clinical ethicists and academics, we identify five main limitations of these methods and underline the importance of developing methods based on the practical knowledge of clinical ethics consultants.
Cet article propose une critique féministe approfondie des droits négociables de procréation (DNP), une mesure proposée pour contrôler la croissance démographique mondiale. L’analyse démontre que les DNP renforceraient les injustices économiques et sociales, tout en introduisant une dimension eugéniste problématique. L’article souligne la nécessité d’élaborer des politiques démographiques respectueuses de l’équité, de la justice sociale et des libertés individuelles.
The exclusion of all patients with a personal or family history of psychosis from psychedelic therapy research is a significant ethical concern. Beginning with a summary of the historical entanglement and disentanglement of psychedelic and psychosis research in Western psychiatry, I then discuss some of the important clinical and socio-cultural reasons why having a personal or family history of psychosis has become a standardized exclusion criterion in almost all contemporary research involving psychedelic drugs. While acknowledging that a high degree of caution is warranted, I contend that the exclusion of patients with a history of psychosis results in significant harms related to safety, accessibility, autonomy, and equity. Drawing on the paradigmatic case of the broad exclusion of pregnant people from drug research, I argue that, rather than preventing harmful consequences, a protectionist and exclusionary approach redistributes these harms in ethically problematic ways. People with a history of psychosis deserve equitable access to the benefits of psychedelic therapy research. Generating more robust safety data, dosage recommendations, and therapeutic guidelines for this group will improve clinical practice and reduce psychedelic-related harm broadly. I also explore the growing scientific literature that suggests novel psychedelic therapies could play a role in the treatment of psychosis, particularly in the case of negative symptoms of schizophrenia for which effective treatments are urgently needed. Ultimately, I critique the dominant practice of psychosis-related exclusion and defend the view that cautious clinical psychedelic research involving individuals with personal or family history of psychosis is ethically imperative. Adopting a more inclusive approach to psychedelic research would ultimately improve safety, increase access, reduce inequities, and prevent long-term harms caused by blanket exclusion.
This text is a response to Torres’ article on artificial superintelligence and human extinction. I place some warning signs on the author’s argumentative trajectory, arguing that the topic of human extinction is relevant, so it is necessary to correct the course at several points.
Decentralized clinical trials (DCTs) are clinical trials in which some or all trial-related procedures take place outside traditional clinical trial sites. Digital technologies have played an important role in enabling the remote conduct of clinical trials and it is anticipated that many clinical trials will adopt full or hybrid decentralized models. While DCTs present many benefits and opportunities to streamline and improve the conduct of clinical trials, there are also several challenges in their implementation. These include privacy and confidentiality risks, challenges in trial oversight and monitoring, digital literacy, and participant compliance. To address these challenges, it is essential to clarify the ethico-legal duties of clinician-researchers, who are responsible for the overall conduct of clinical trials. This article analyzes these duties and identifies key factors needed to support the adoption of DCTs while safeguarding participants’ health, safety, and well-being.
Documenting the evolution and experiences of bioethics services contributes to a repository of successes and challenges that can serve as a lasting resource for all involved in bioethics work. This chronology of bioethics at The Hospital for Sick Children (SickKids) in Toronto, Canada, is one such documenting project. It describes events, challenges and successes that contributed to the Bioethics Department’s evolution from an ethics committee to a department increasingly integrated into teams and processes across the organization. Using a mix of primary and secondary sources, including materials prepared for cyclical accreditation surveys, newspaper clippings, books and reports, meeting notes, eyewitness accounts, oral testimonies, video recordings, personal communications, and archival materials, we explore the development and integration of bioethics activities at SickKids and the ways in which staff and colleagues navigated the place and purpose of bioethics within the institution from the early 1980s to the present day. Each hospital-based bioethics resource reflects and contributes to the situated development of bioethics across local, national and international contexts. A focused examination of one department’s development can preserve the contributions of people, practices, and contexts that defined major milestones in its development and shaped its organizational culture. Reflective work of this kind supports bioethics service development, ensures the lessons embedded in institutional knowledge remain accessible to current and future bioethicists, and contributes transferable insights that can inform other services and the broader field of applied bioethics.
As AI-powered chatbots become more common in mental health care, we explore in this commentary the ethical concerns they raise for LGBTQ2+ individuals — users who already face considerable systemic barriers and stigma. We examine how these tools, while promising greater access, may unintentionally perpetuate harm through bias, privacy risks, and techno-solutionism.
Nous présentons trois films, Paternel, Amanda et La plus précieuse des marchandises, qui mettent en scène des liens brisés par la violence et réparés en établissant de nouveaux liens. Dans chacun des films il y a une démonstration d’une éthique relationnelle jumelée à une éthique de la vertu du courage.
I was busy. Often, I was not mindful of the present moment. Too often I was thinking ahead to the next thing on my list. So I began to write one haiku each day. I thought it might help to become more present, mindful, and responsive. In this essay, I describe my haiku practice. At first, I wanted to save my haiku and arrange them by seasons, but that didn’t work. So I arranged them in these categories: walk to work; nature and human nature; young and old; married life; modern life; computers, AI, and the Internet; academic life; medical world; pandemic life; retirement; political life; spiritual practice; death; and attitude toward death. I explain these categories by giving examples of the haiku that I wrote. I also add a short, tentative conclusion that refers back to my spiritual aims: to become more present, mindful, and responsive. My practice did help me to become more present and mindful, but I’m not sure that I’m any more responsive. I believe that to become more responsive, I will need to develop new habits — new ways of inhabiting the world. I conclude with steps that might help me to become more responsive.
