Andria Bianchi

Avant la pandémie de COVID-19 (ci-après « la pandémie »), l’adéquation des ressources en matière de soins de santé dans l’ensemble du Canada suscitait déjà de nombreuses inquiétudes. La pandémie de COVID-19 a exacerbé ces inquiétudes de manière exponentielle, en élargissant les fissures déjà importantes dans les systèmes de santé provinciaux. Actuellement, le système est confronté à l’exacerbation des délais d’attente pour les opérations chirurgicales qui avaient été retardées par les fermetures obligatoires pendant la pandémie. En Ontario, les retards dans les opérations chirurgicales et les retards associés en radiologie et dans d’autres services essentiels aux soins pédiatriques ont conduit à la création d’un consortium d’hôpitaux pédiatriques qui se sont engagés à plaider en faveur d’un financement accru de la pédiatrie. Jusqu’à présent, les gouvernements provinciaux et fédéral ont accepté une injection ponctuelle de fonds, mais le consortium demande une augmentation permanente du financement de la pédiatrie. Le secteur des adultes a également souffert de retards et d’arriérés. En outre, comme nous l’avons déjà noté, les adultes plus âgés ont supporté le poids de la morbidité et de la mortalité associées au COVID-19. Le défi pour le secteur pédiatrique est de savoir si et comment défendre la priorité accordée aux enfants et aux jeunes. Dans cet article, nous passons en revue quatre approches de l’allocation équitable – l’âgisme utilitaire, des manches équitables (fair innings), l’approche prudentielle de la durée de vie et l’âgisme prioritaire – et examinons leurs forces et leurs faiblesses. Nous concluons en soutenant l’âgisme prioritaire (prioritarisme). Le prioritarisme conserve les points forts de l’âgisme utilitariste et des manches équitables tout en évitant leurs faiblesses. En outre, comme le prioritarisme ne considère pas l’âge comme un critère moral indépendant, les systèmes d’attribution fondés sur cette base sont moins susceptibles de faire l’objet de contestations juridiques et peuvent être plus acceptables pour le grand public.

With the increased use of technological supports in residential care homes, there is growing interest in the use of real-time location systems (RTLS) to enhance safety and streamline care. However, these technologies raise significant ethical concerns, particularly for vulnerable populations such as residents living with dementia. This paper critically examines the ethical tensions arising from RTLS implementation, focusing on autonomy, beneficence, non-maleficence, and justice. A feminist bioethics critique broadens the discussion, emphasizing relational autonomy and epistemic injustice. A composite case study illustrates the challenges faced by residents, staff, and families, revealing gaps in consent processes, data ethics, and the impact on compassionate care. Recommendations include continuous consent mechanisms, ethical data use policies, enhanced staff training, and strategies to counter epistemic injustice. By integrating principles from feminist bioethics, this paper offers a comprehensive framework for ethically integrating RTLS into dementia care, balancing technological innovation with human dignity and compassionate care.

L’autonomie est l’un des principaux principes directeurs de l’éthique des soins de santé dans les sociétés libérales occidentales. D’une manière générale, ce principe signifie que nous devons respecter les décisions des individus par rapport à eux-mêmes, même si ces décisions sont risquées d’un certain point de vue. Le principe d’autonomie peut revêtir une importance particulière lorsque l’on pense aux populations marginalisées dont la capacité à prendre des décisions autonomes et à faire respecter ces décisions (en permettant à la décision autonome de se produire par des moyens positifs ou négatifs) a été largement, historiquement inexistante. L’une de ces populations est constituée par les personnes atteintes de déficiences intellectuelles et de troubles du développement (DITD). Lorsqu’une personne atteinte d’une DITD prend une décision autonome et risquée, un clinicien peut respecter sa décision en raison du poids et de la priorité généralement accordés au principe d’autonomie. Toutefois, cet article soutient que la décision autonome et risquée d’une personne atteinte de DITD concernant la prestation de soins ne devrait être respectée que dans la mesure où le clinicien a démontré qu’il était digne de confiance dans le but d’obtenir la confiance. En d’autres termes, je soutiens qu’à moins qu’un clinicien n’ait démontré qu’il est digne de confiance, une décision autonome risquée liée à la prestation de soins ne devrait pas être immédiatement respectée lorsqu’on travaille avec une personne atteinte de DITD. La raison pour laquelle une décision autonome risquée ne devrait pas être respectée à moins qu’il n’ait été démontré qu’il est digne de confiance est la façon dont la fiabilité peut influencer la prise de décision dans la mesure où la confiance est gagnée. Si une personne atteinte de DITD prend une décision risquée sans avoir trouvé son prestataire digne de confiance, sa décision peut être inutilement motivée par un manque de confiance. Il y a de bonnes raisons pour qu’une personne atteinte de DITD ne trouve pas ses cliniciens dignes de confiance, d’où la nécessité d’assurer la démonstration intentionnelle de la fiabilité avant le respect de la prise de décision autonome et risquée.

Have you ever considered that people with intellectual disabilities have a right to become parents? Have you thought about the ways in which healthcare services tend to “treat” autistic people? How do you feel about selective termination of pregnancy based on a gene linked to a condition conferring intellectual impairment? To what extent might your feelings about these – and other questions regarding neurodiverse populations – be based on widespread ableism that pervades our organizations, systems and society? In this book, contributors from a multitude of backgrounds engage with ethically complex questions relevant to people with intellectual and developmental disabilities (IDD) and/or autistic people, as well as those caring for and working with neurodiverse populations. The book includes the following sections: Moral Status; Capacity and Consent; Inclusion and Empowerment (Society, Systems and Ethics); Inclusion and Empowerment (Practical Approaches); Sexuality, Intimacy, Romance, and Parenting; Health Care; and Ethical Responses to ‘Behaviours’. Our overall hope is that with more awareness of the issues and challenges, and some exposure to a positive framing of these, the volume may contribute to a better understanding of, and broader advocacy for, the rights and ethical treatment of autistic people and individuals with IDD.

People with intellectual and developmental disability (IDD) are sexual beings. However, some may be unable to consent to sexual acts in particular ways due to characteristics associated with their disability. An inability to consent in ways that are traditionally considered acceptable poses a challenge insofar as sexual consent is legally and morally significant. Additionally, as per the United Nations Convention on the Rights of Persons with Disabilities, people with disabilities, including IDD, have sexual rights. Given (1) the importance of consent, (2) limitations of some sexual consent models for people with IDD, and (3) the fact that people with IDD have sexual rights, it is important to reflect upon whether and what kinds of sexual consent models may be helpful for some people with IDD who may be unable to consent in traditional ways. The purpose of this chapter is to offer reflections and possible future directions so that people with IDD can engage in consensual sexual acts in a manner regarded as ethically licit.

This book meaningfully reflects upon difficult, timely, and debated ethics questions relating to people with intellectual disabilities (IDs) and autistic people. The book challenges now dated perceptions and introduces innovative ideas by leading scholars regarding some of the most complex, controversial, and relevant ethical dilemmas involving these neurodiverse populations. People with IDs and/or those on the autism spectrum continue to experience various forms of oppression and unjust treatment across the globe, despite the UN Convention on the Rights of Persons with Disabilities (CRPD). The collection explores questions such as: Can people with IDs make informed decisions about their medical treatment, living circumstances, and overall life? What are the ethical implications of selective termination of pregnancy based on a gene linked to a condition conferring intellectual impairment? How can we ensure that people with IDs and autistic people are meaningfully included in research? Can people with IDs successfully parent? How can we support the capabilities of neurodiverse populations such that they enjoy the rights afforded by the CRPD? Each contributor critically examines how we can move forward to create a world that understands and respects the rights of every person with ID and/or autism. An indispensable read for bioethicists, ethics students, social justice scholars, and others interested in and working with people with IDs and autistic people.

Lors du forum 2023 de la Société canadienne de bioéthique, 28 éthiciens praticiens des soins de santé et d’autres participants de tout le Canada, y compris des étudiants et des fellows en bioéthique, se sont réunis virtuellement pour un atelier collaboratif intitulé « Towards Evaluating Clinical Ethics Consultation Effectiveness: Engagement in a Scoping Review of Reported Outcomes ». L’atelier était ouvert à tous les membres de la communauté bioéthique qui s’étaient inscrits au forum, mais il était principalement destiné aux spécialistes en éthique clinique.

The pervasive use of contracts in healthcare is a source of unease for many healthcare ethicists and patient advocates. This commentary examines the use of such contracts with individuals in rehabilitation settings who have complex medical and behavioural issues. The goals of this paper are to examine the many factors that can lead to contract use, to discuss some legal and ethical implications of contract use, and to assess contract use in light of concerns about health equity. The paper concludes with some practical alternatives to the use of such contracts, and refers specifically to tools that might be borrowed from the field of behavioural therapy.

BackgroundClinical ethics consultations (CEC) can be complex interventions, involving multiple methods, stakeholders, and competing ethical values. Despite longstanding calls for rigorous evaluation in the field, progress has been limited. The Medical Research Council (MRC) proposed guidelines for evaluating the effectiveness of complex interventions. The evaluation of CEC may benefit from application of the MRC framework to advance the transparency and methodological rigor of this field. A first step is to understand the outcomes measured in evaluations of CEC in healthcare settings. ObjectiveThe primary objective of this review was to identify and map the outcomes reported in primary studies of CEC. The secondary objective was to provide a comprehensive overview of CEC structures, processes, and roles to enhance understanding and to inform standardization.MethodsWe searched electronic databases to identify primary studies of CEC involving patients, substitute decision-makers and/or family members, clinicians, healthcare staff and leaders. Outcomes were mapped across five conceptual domains as identified a priori based on our clinical ethics experience and preliminary literature searches and revised based on our emerging interpretation of the data. These domains included personal factors, process factors, clinical factors, quality, and resource factors. ResultsForty-eight studies were included in the review. Studies were highly heterogeneous and varied considerably regarding format and process of ethical intervention, credentials of interventionist, population of study, outcomes reported, and measures employed. In addition, few studies used validated measurement tools. The top three outcome domains that studies reported on were quality (n = 31), process factors (n = 23), and clinical factors (n = 19). The majority of studies examined multiple outcome domains. All five outcome domains were multidimensional and included a variety of subthemes.ConclusionsThis scoping review represents the initial phase of mapping the outcomes reported in primary studies of CEC and identifying gaps in the evidence. The confirmed lack of standardization represents a hindrance to the provision of high quality intervention and CEC scientific progress. Insights gained can inform the development of a core outcome set to standardize outcome measures in CEC evaluation research and enable scientifically rigorous efficacy trials of CEC.

Determining whether and/or how to enable older persons with disabilities to engage in sex raises several ethical considerations. With the goal of enabling the sexual functioning of older adults with disabilities, Jecker argues that sex robots could be used as a helpful tool. In her article, ‘Nothing to be Ashamed of: Sex Robots for Older Adults with Disabilities’, Jecker acknowledges the importance of sexual functioning and the fact that ageist assumptions incorrectly classify older persons as asexual. Additionally, older adults may experience disabilities that negatively influence their sexual functioning, which is problematic since sex may be linked to the following capabilities: developing a meaningful life narrative; being healthy; experiencing bodily integrity; feeling and communicating emotions; affiliating with others and reflecting on and choosing a life plan.1 In accordance with Nussbaum’s capabilities approach,2 Jecker says that society has a duty to support these capabilities at a minimal threshold. And insofar as sexual functioning may be relevant to the capabilities for older adults with disabilities, then we need to respond accordingly. One way of achieving this aim is by providing access to sex robots. I agree that sex robots ought to be made available for older adults with disabilities. Nevertheless, the article inspires several areas for further exploration. As Jecker rightfully mentions, older adults are often incorrectly labelled as non-sexual. For instance, in their analysis of older individuals’ views on sex and quality of life, Gott …

The question of whether transgender athletes should be permitted to compete in accordance with their gender identity is an evolving debate. Most competitive sports have male and female categories. One of the primary challenges with this categorization system, however, is that some transgender athletes (and especially transgender women) may be prevented from competing in accordance with their gender identity. The reason for this restriction is because of the idea that transgender women have an unfair advantage over their cisgender counterparts; this is seen as a problem since sports are typically guided a principle called ‘the skill thesis’, which suggests that sports are supposed to determine who is most skillful by maintaining a fair starting point. In this paper, I argue that if the skill thesis ought to be maintained and there continues to exist no conclusive evidence in support of unfair advantages possessed by trans women, then we may want to re-consider the gender binary in sport. Rather than having male/female categories, it may make more sense to categorize athletes based other sport-specific factors (e.g., height, weight, etc.). This may help to maintain the skill thesis while at the same time removing potentially unfair and discriminatory barriers against transgender athletes.

Sex and dementia is becoming an increasingly important topic in applied ethics. By the year 2030, more than 74.7 million people are expected to be diagnosed with dementia worldwide; many of these people may want to engage in sex. The question of how to manage cases of sex and dementia is occurring more frequently in practical cases because of our aging population. The primary reason that sex and dementia is ethically complex is because sexual consent is both legally and morally significant, yet many people with dementia may be unable to consent in accordance with current standards. In this dissertation, I introduce three frameworks that could be used to approach cases of sex and dementia. The first framework is that of relational autonomy and supported decision-making; this framework tries to enable people with dementia to make autonomous sexual decisions with support. The next approach is a framework of advance sexual consent, which considers the relevance of prior autonomous sexual decisions. The third framework focuses on prioritizing well-being above a person’s capacity to make autonomous decisions and to consent to sex. I assess each framework and consider their positive and negative nuances. The overall goal is to balance the right to sexuality while at the same time protecting people with dementia from undue harm. Ultimately, this dissertation shows that cases of sex and dementia ought to be managed on a case-by-case basis; one framework will not work for every context. In order to approach situations on a case-by-case basis, I contend that a process of weighing and balancing norms and principles is necessary. I use Beauchamp and Childress’s method of weighing and balancing to propose a systematic procedure. This process takes various factors into account in order to determine how to proceed in an ethically defensible manner. According to an approach of weighing and balancing, sexual acts would not be immediately barred based on a person’s inability to consent; rather, a person’s present convictions, the sexual activity to which they want to participate, the possibility of experiencing undue harm, their prior wishes and values, their capacity to make autonomous decisions with support, etc. would all be considered. Overall, this dissertation contributes to the complex topic of sex and dementia and offers a starting point for further discussion on how to approach these cases in practice.

This paper explores the ethics of deceased‐directed donation (DDD) and brings a unique perspective to this issue—the relevance of providing family‐centered care and culturally sensitive care to deceased donors, potential recipients, and their families. The significance of providing family‐centered care is becoming increasingly prevalent, specifically in pediatric healthcare settings. Therefore, this topic is especially relevant to those working with and interested in pediatrics. As the world is becoming more diverse with globalization, assessing the cultural aspect of the ethics of DDD is increasingly salient. We provide a brief overview of DDD across the globe, review prominent arguments both for and against DDD, consider family‐centered and culturally specific considerations, and offer considerations for the development of a policy or guideline. We determine that the practice of DDD is ethically defensible in certain circumstances and congruent with providing both family‐centered and culturally sensitive care. Our analysis is relevant to any country with a diverse population and any healthcare provider or institution that operates under a framework of family‐centered care, such as those in pediatric hospitals.

This paper considers whether transgender women should be permitted to compete in female categories in sports. Trans* women are often criticized for competing in female categories because they are seen as having an unfair advantage. Specifically, they are seen as having high levels of testosterone that unfairly enhance their performance in comparison to cisgender competitors. In this paper, I argue that trans* women should be permitted to compete in female categories. I suggest that if we want to maintain the skill thesis as a guiding principle of sports and allow trans* women to compete in female categories, then we need to take relevant genetic advantages into consideration by introducing a handicap system. I claim that a handicap system should consider both cisgender and transgender women’s effective testosterone levels.

Respect for autonomy grounds common ethical judgments about why people should be allowed to make decisions for themselves. Under this assumption, it is concerning that a number of feminist conceptions of autonomy present challenges for people with intellectual disabilities. This paper explores some of the most philosophically influential feminist accounts of autonomy and demonstrates how these accounts exclude persons with intellectual disabilities. As a possible solution to these accounts, Laura Davy’s inclusive design approach is presented, which is a revised conception of autonomy that accommodates intellectual disabilities. While Davy’s approach to autonomy views people with intellectual disabilities as autonomous, it encounters limitations in regard to sexual autonomy, which incorporates certain judgments that are intuitively at odds with her recommendations. The remainder of this paper describes some complexities of sexual autonomy and determines why these are problematic for Davy’s account. After analyzing some of the challenges that sexual autonomy presents, I suggest a potential modification for consideration. This modification will allow Davy’s account to address the topic of sexual autonomy for persons with intellectual disabilities. My proposal is a matter of theory following practice.