Relationships between disability and bioethics are often fraught, particularly when we are concerned with imagining possible futures. The futures imagined for disabled people are often futures without disabled people, utopias where disability has been cured, defeated, or overcome. How might we build better disability futures in a discipline so often committed to futures without disability? Here, I call for more creative inquiries into disability through research, representation, education, and engagement with disabled expertise.

Considering the possible futures of bioethics invites us to interrogate our existing theories and methods. This text focuses on futures for narrative medicine, offering four notes for an expanded practice. Specifically, I argue that future work in narrative medicine can further benefit from interrogating the scopes, archives, and methodologies of narrative medicine, and investing in material supports.

In conversation with Hortense Gallois’ recent essay on the importance of bioethicists participating in public discourse, I suggest that speaking up is as fraught as it is important. Focusing on the anti-trans movement’s misuse of expertise, I highlight the fine line between correcting misinformation and inadvertently causing harm through ill-timed speech. Drawing on the work of Eva Feder Kittay, I suggest that knowing when to speak up and when to stay silent starts with understanding the communities we speak about and (...) the consequences that our words can have on them. (shrink)

Professionalization across the field of bioethics is valuable and should be invested in by future generations of ethicists. To support this, standardization should expand beyond clinical ethics, ensuring considerations for organizational and research ethics, and encouraging membership that includes those with diverse backgrounds of education, lived experiences, and employment.

PhD students, post-docs, and bioethics researchers are conducting nuanced research to develop advancements in the field, and this research offers valuable insights that can support the practice of bioethics. However, this research often does not address how much work is still needed to incorporate basic ethical principles into practice, from research oversight to applications within a clinic. Applying an ethical lens is often viewed as “time consuming” or “nice-to-have” in the professional field, rather than something that must be intrinsically built (...) into every patient encounter. Much of the existing healthcare system fails to incorporate basic ethical deliberation into practice, causing avoidable conflict, tension, and mistrust. This paper cautions that there is a plethora of groundwork still needed before paving the way forward to advance the field of bioethics. The ground needs to be flat and the asphalt warm, otherwise the road we build will be cracked and unstable. To do this, new ethicists must passionately foster and promote elementary ethical deliberations across all domains of healthcare. We must strive to create spaces where all persons are comfortable sharing their concerns, values, and unique perspectives to best inform decision making. This paper synthesizes practical wisdom, emotional intelligence, and integrates surprising pragmatic lessons from the lived experience of an early career clinical ethicist. (shrink)

This perspective explores the role of the bioethicist in shaping public discourse through the media, while accounting for the power of narratives and voice.

This text proposes a transactional mentoring perspective to help bioethics students better address the ethical challenges that exist in all areas of social life. A transactional approach is best suited to bioethics mentoring that produces positive change and fosters human flourishing on the part of both mentor and mentee.

In this response to the commentary “Disabling Bioethics Futures”, I offer support for the author’s argument that bioethics theory and pedagogy ought to be reframed to better incorporate the perspectives of disabled persons. Specifically, I argue that it is not only a pedagogical flaw but an active harm when bioethics pedagogy preserves disrespectful or discriminatory views by using outdated literature.

This response expands on Wyzynski’s focus of the importance of fostering elementary ethics deliberation and education within hospitals. In particular, it highlights that most of the clinical ethicist’s work revolves around basic, fundamental ethical dilemmas, as well as the importance of ethics education being within the clinical ethicist’s scope of practice and responsibility.

This commentary details the shortcomings of the traditional healthcare ethics committee model in modern healthcare and argues for the necessity of professional clinical bioethicists to better meet modern healthcare’s ethics needs.

This case study discusses the challenges of end-of-life decision-making in practice, focusing on the delicate balance between medical paternalism, shared decision-making, and the rights of surrogate decision makers. The family initially struggles to grasp the severity of their loved one’s medical condition but a pivotal moment during the Goals of Care meeting brings sudden clarity. This case explores the appropriateness and implications of the practice of informed non-dissent; and our analysis suggests that it is inappropriate unless there is compelling evidence (...) for decision paralysis. Practical strategies are offered that facilitate compassionate dying care within the constraints of clinical urgency. (shrink)

This is the story of an elderly woman who suffers from dementia and has endured a lifetime of abuse from her husband. As the tale unfolds, we learn about this old woman’s tragic history, and of the attempts her doctor has made over the years to help her. The ethical issues the doctor struggles with, his emotions, as well as the strategic dilemmas he is forced to confront as he plans and manages the treatment and care of the husband and (...) the wife create an unsettling backdrop to a story of patient and doctor behaviour. Ethical emotional and professional dilemmas when treating an abusive husband and his wife are discussed in detail. (shrink)

Since Canada legalized medical assistance in dying (MAID) in 2016, it has become one of the most permissive regimes in the world for euthanasia and assisted suicide. The number of deaths has risen rapidly and the categories of eligibility continue to expand. The country is poised, as of March 2024, to allow MAID for those whose sole underlying condition is mental illness, generating considerable debate. Advocates of MAID for mental illness often frame it as a question of equal access, but (...) this extension involves considerable complexities not present in other cases. This paper examines psychiatric MAID in the Canadian context, engaging directly with the most pertinent arguments of the practice’s advocates. The paper argues that independent of any prior commitments vis-à-vis the permissibility of MAID per se, there is a clear ethical and legal necessity to oppose extending MAID on the grounds of mental illness if we follow the parameters set up within the Canadian regime. The paper advances three arguments: first, that mental illnesses cannot be deemed irremediable, as required by the Canadian law; second, that we cannot establish with adequate certainty that a mentally ill patient has the decision-making capacity to choose MAID; and third, that allowing psychiatric MAID will have a devastating impact on care and support of the mentally ill. (shrink)

Navigating the social dynamics of clinical spaces can be an added challenge to the complexities of clinical work. Acts of bias and discrimination from patients have been found to affect healthcare workers both physically and psychologically. As more attention is paid to addressing discrimination by patients, we raise attention to the experiences and unique needs of clinical learners. Given that learners play a vital role in the functioning of hospital ecosystems, we advocate for the inclusion of their voices in any (...) revision to policy and practice. In this paper, we critically examine the academic literature on learner’s experiences with mistreatment from patients, and their families. We outline the major gaps in policy, process, training, and institutional culture, noting the urgent need for institutions to address these gaps in ways that are meaningful to learners. Our goal is to highlight the lack of bioethics attention to this matter and propose areas where we can add value and support. With this goal in mind, we present a series of tables with guiding values, ethical considerations and questions for institutions. (shrink)

In the light of current legislation on Medical Aid in Dying ─euthanasia and assisted suicide─ in different countries worldwide, there have been some arguments devoted to the right to conscientious objection for healthcare professionals in these specific practices. The goals of this scoping review are to provide an overview of the motivations and causes that lie behind conscientious objection identified by previous literature according to professionals’ experience and to verify if these motives match with theoretical debates on conscientious objection. As (...) the results show, there seems to be a dissonance between the motivations included in the traditional and mainstream definition of conscientious objection that is used in the theoretical and speculative framework and the actual factors that empirical studies note as reported motivations to object to Medical Aid in Dying. Hence, either we consider new factors to include as causes of “conscience”, or we accept that there are motivations that are not actually applicable to conscientious objection and should be addressed by other means. As conscientious objection in Medical Aid in Dying is multifaceted, we claim from the results that there can be different kinds of motivations acting at the same time. In any case, it is helpful to rebalance theoretical and empirical considerations to fully understand the complexity of the phenomenon and give some insights on how to deal with it. (shrink)

Several recent news items discuss cases where medical assistance in dying seems to be sought not because the medical situation is beyond hope despite optimal supports, but rather because supports that could theoretically be available are inaccessible in practice or, if accessible, are apparently insufficient. We discuss these developments.

Medical assistance in dying (MAiD) is scheduled to be legalized in Canada as of March 2024 for individuals with mental disorder/illness as their sole underlying medical condition (MAiD MD-SUMC). As guidelines are being developed for the safe and consistent provision of MAiD MD-SUMC, sufficient consideration must be given to the interpretation of ambiguous terminology in current legislation, and to ensuring sound use of acceptable ethics principles in these interpretations.

Recent breakthroughs in criminal investigations, especially of high-profile cold cases, have helped to consolidate the role of DNA analysis in investigative contexts. Consequently, some jurisdictions are looking to expand DNA collection and analysis methods. In Canada, legislation has been proposed to expand the National DNA Databank (NDDB) and to allow familial searching in criminal and forensic investigations. This article outlines the ethical implications of the proposed legislation and, more broadly, of genealogical methods already in use that operate outside the NDDB (...) and rely heavily on for-profit and consumer DNA services. Current DNA analysis within the criminal justice system is heavily regulated and provides important protections not only for individuals but also for genetic relatives whose biometric data is indirectly implicated. In contrast, familial searching poses risks for offender privacy as well as for their relatives. Additionally, the expanding practice of genetic genealogical searching relies on unregulated commercial products that use different technology to expose highly detailed genetic information. This technology falls short of rigorous investigational standards and poses significant problems for informed consent. We conclude that expanding DNA collection within the NDDB to include familial searching risks exacerbating existing systemic bias and that genetic genealogical searching outside of the NDDB is incompatible with existing Canadian legislation that safeguards privacy, genetic non-discrimination, and fundamental rights and freedoms. (shrink)

In light of high-profile cases of sexual assault and other unethical conduct by therapists, recent clinical research involving psychedelic drugs has generally mandated the video recording of therapy sessions. In this paper, I address a gap in the literature by investigating ethical issues related to video recording in the unique context of psychedelic therapy sessions. I begin by summarizing the important benefits and risks related to video recording. I then examine ethical concerns about mandatory recording of psychedelic therapy sessions from (...) a patient perspective and argue that these concerns must be taken seriously by clinicians and researchers. I also examine the view that video recording is essential for clinician safety. Given the legitimacy of concerns from both perspectives, I outline some basic informed consent considerations that could generate dialogue around potential patient concerns and defend the option to opt-out for both patients and clinicians. In conclusion, I underscore the importance of further critical bioethical inquiry and qualitative research regarding video recording practices in the context of psychedelic-assisted therapies. (shrink)

Introduction: The rapid advancement of intricate technologies and the emergence of novel surgical methodologies necessitate nuanced ethical decision-making under high-stress scenarios. Consequently, cultivating an understanding of professional ethics within the surgical environment is crucial for all practitioners involved in patient care. This study was initiated with the aim of designing a comprehensive curriculum for Iranian medical schools, focusing on professional ethics within the operating room. Methods: This mixed-method exploratory research was executed in distinct qualitative and quantitative phases. The first stage (...) involved conducting 12 structured interviews with Iranian faculty members who were experts in education of professional ethics and operating room staffs for assessing the current needs and reviewing extant curricula. The subsequent quantitative phase entailed evaluating the elements of each curriculum axis via the Delphi method. Results: The qualitative phase led to the identification of 45 primary codes, 14 subcategories, and 5 primary categories. The quantitative phase confirmed 3 instructional goal domains, 12 instructional content areas, 8 teaching methodologies, and 10 evaluation methods through the Delphi process. These confirmed components were eventually incorporated into various theoretical and clinical courses as longitudinal integration themes. Conclusion: Based on our findings, we recommend the development of educational objectives targeting cognitive, affective, and psychomotor domains and the longitudinal integration of a professional ethics course. (shrink)

The World Economic Forum has called dementia one of the biggest global health crises of the 21st century. In this paper, I make the case that unpaid caregiving by family or close others of persons living with dementia should be a matter of public health. Shaji and Reddy proposed this in 2012 in the context of dementia care in India. They explicitly acknowledge the influence of Talley and Crews’ 2007 article on caregiving as an emerging public health concern. However, they (...) narrow their proposal to caregiving for persons living with Alzheimer’s disease and related dementias (ADRD), which I take to be an important first step in building an argument for putting caregiving more firmly on a public health agenda. In order to support my claim, first, I establish that caregiving is a social determinant of health. Second, I counter objections to the addition of caregiving for persons living with ADRD to a public health agenda, as it would lead to public health mission creep. I then argue that a broad understanding of public health can be inclusive of this type caregiving and is preferable as it highlights an issue of health equity, the gendered nature of caregiving. Finally, I make the case that a definition of public health inclusive of the social determinants of health and caregiving is more adequately suited to address the health consequences of the current changing demographic patterns. My argument adds support to writings on migration calling for broadening the scope of public health. (shrink)

Although humanitarian work is linked to ethical issues that are sometimes of concern, no review of the literature to date has described these issues and their possible responses. Following the method proposed by McCullough, Coverdale and Chervenak, a critical review of the literature was conducted to fill this gap in the existing literature. 83 articles were selected for analysis and a total of 25 units of meaning emerged, which were grouped into three broad categories of ethical issues: 1) subjective ethical (...) experiences, 2) practical ethical problems, and 3) politics and power. In terms of possible responses to these issues, six articles propose responses that are either preventative or restorative in nature. In the end, although the corpus of texts studied is dominated by the often rich, sometimes anecdotal experiential experiences of field actors in humanitarian work, little empirical research has been conducted to date to identify the ethical issues related to this practice and the possible responses to them. Also, none of the proposed responses have been empirically tested to determine their relevance and effectiveness. (shrink)

In this paper, I draw on my research and experience as a disability ethics educator and advocate in order to demonstrate that both Canada’s COVID-19 response and its expansion of eligibility for MAID are symptoms of the medical and systemic ableism that afflicts Canadian society. I conclude with a consideration of the enduring danger that eugenic ableism disguised as autonomy poses for people with disabilities in a Canada where COVID-19 may be waning, but where the contagion of ableism turned lethal (...) through MAID continues to spread. (shrink)

Debate rages over whether Canadian provincial and territorial governments should allow healthcare institutions to conscientiously object to providing medical assistance in dying (MAiD). This issue is likely to end up in court soon through challenges from patients, clinicians, or advocacy groups such as Dying With Dignity Canada. When it does, one key question for the courts will be whether allowing institutional conscientious objection (ICO) to MAiD respects (i.e., shows due regard for) the consciences of the objecting healthcare institutions, understood as (...) unitary entities. This question has been thoroughly explored elsewhere in the academic literature. However, another key question has been underexplored. Specifically, precedent set by the Supreme Court of Canada’s decision in Loyola High School v. Quebec (Attorney General) suggests that the courts will consider whether allowing ICO to MAiD respects the consciences of the personnel within objecting healthcare institutions. My answer to this question is no, by which I mean that allowing ICO to MAiD shows undue disregard for some consciences and undue regard for others. To justify this answer, I analyze the arguments that hold that allowing ICO in healthcare respects the consciences of the personnel within objecting healthcare institutions. My conclusion is that none of these personnel-based arguments succeed in the case of ICO to MAiD. Some fail because they are wrong about the nature of conscience and complicity. Others fail because they contradict the arguments’ proponents’ positions on conscientious objection by individual healthcare providers. Still others fail because they are internally inconsistent. (shrink)

This history of the modern introduction of assisted suicide in North America follow a tortuous course, with complete rejection of the idea, to implementation in many of its jurisdictions. North America was not a leader in this approach to end-of-life care, with the Netherlands and Belgium playing that role. Tracing the path from a felonious and ethically anathematic place in North American society it was resurrected into a legally and ethically acceptable practice over a period of two decades. The historical (...) course of PAS (Physician Assisted Suicide) and MAID (Medical Assistance in Dying) in many ways mimicked the evolution of other major changes in our view of the world, and like assisted suicide, experienced almost universal rejection and ultimately the embrace of those people and institutions that initially rejected the ideas first expressed by thoughtful and heroic persons. Galileo Galilei was one of the icons of science and discovery: he was almost burned at the stake during the Inquisition only to be “resurrected” to his place in the pantheon of great thinkers – but it took almost four hundred years to reach that pinnacle. We must be very careful how we interpret new ideas and thoughts about the process we apply and the consequences if we reject them. (shrink)

This article summarizes several Canadian court decisions from 2015 onward stemming from wrongful birth and wrongful life litigation. Plaintiff success often turns on whether causation is established, on a balance of probabilities, between a physician’s breach of standard of care and the harm to the parents and/or the child later born. Physicians’ failure to offer or order screening or diagnostic tests has been a source of wrongful birth liability, as too can be failure to ensure patient understanding of results. Physicians (...) should ensure that they recommend diagnostic testing when presented with concerning clinical indications in accordance with professional practice guidance. Given non-invasive prenatal screening’s (NIPS) advantages and the threat of wrongful birth liability for failure to discuss this procedure, it is likely to be propelled into an ever more prominent position as a first-choice offering for aneuploidy screening. Appropriately cautious physician behaviour involves discussing and offering NIPS, and also involves ensuring that results are understood. This can reduce physician liability, improve patient reproductive autonomy, and sometimes benefit patient health by preventing or lessening trauma that informed women may opt to mitigate when granted the opportunity. (shrink)

Behavioural variant frontotemporal dementia (bvFTD) is a subtype of frontotemporal dementia characterized by changes in personality, social behaviour, and cognition. Although neural abnormalities cause bvFTD patients to struggle with inhibiting problematic behaviour, they are generally considered fully autonomous individuals. Subsequently, bvFTD patients demonstrate understanding of right and wrong but are unable to act in accordance with moral norms. To investigate the ethical, legal, and social issues associated with bvFTD, we conducted a scoping review of academic literature with inclusion & exclusion (...) criteria and codes derived from our prior work. Among our final sample of fifty-six articles, four mentioned bvFTD patient-offenders as unfit to stand trial by insanity, and sixteen mentioned the use of dementia evidence in a court of law to better understand the autonomy of bvFTD patients. Additional emergent issues that were discovered include: training police officers to handle situations involving bvFTD patients and educating healthcare providers on how to help caregivers navigate bvFTD. The current literature highlights the inadequacy of traditional applications of medico-legal categories such as autonomy, capacity and competence, in informing cognitive capacity assessments in clinical and legal settings and deserves consideration by neuroethicists. (shrink)

Precision medicine can put clinicians in a position where they must act more as resource allocators than their traditional role as patient advocates. In the allocation of transplantable organs and tissues, the use of eplet matching will enhance precision medicine but, in doing so, generate a tension with the present reliance on rule of rescue and justice-based factors for allocations. Matching donor and recipient human leukocyte antigens (HLA) is shown to benefit virtually all types of solid organ transplants yet, until (...) recently, HLA-matching has not been practical and was shown to contribute to ethnic/racial disparities in organ allocation. Recent advances using eplets from the HLA molecule has renewed the promise of such matching for predicting patient outcomes. The rule of rescue in organ allocation reflects a combination of ethical, policy, and legal imperatives. However, the rule of rescue can impede the allocation strategies adopted by professional medical associations and the optimal use of scarce transplant resources. While eplet-matching seeks to improve outcomes, it may potentially frustrate current ethics-motivated initiatives, established patient-practitioner relationships, and functional conventions in the allocation of medical resources such as organ and tissue transplants. Eplet-matching allocation schemes need to be carefully and collaboratively designed with clear, fair and equitable guidelines that complement functional conventions and maintain public trust. (shrink)

Online resources offer a uniquely efficient way of sharing health research with scientists and the public. Using web portals to make results and study information available to diverse audiences could work to accelerate research translation and empower patients to play a more active role in their care. But using online tools to broadly share health information raises several challenging ethical and regulatory questions. Issues such as equity, privacy, and patient empowerment may create challenges for regulators, portal developers, as well as (...) researchers. It is additionally unclear whether web portals designed to facilitate access to research results and general health information will be regulated as medical devices under emerging regimes that control software with medical purposes. This paper aims to comparatively address whether online therapeutic portals for sharing health research are likely to be regulated in Canada, the United States, the United Kingdom, and France. We find that though these jurisdictions have each taken recent steps to regulate software as medical devices, the applicable regimes will generally not capture online portals for sharing health research. Though online portals for sharing health research are probably unregulated in many (if not most) jurisdictions, agencies have nevertheless signalled their concerns regarding several important ethical considerations (such as equity, transparency, and safety), to which portal developers and researchers should be attentive and respond. We describe here one set of issues highlighted by regulators – that is, efficiency, equity, transparency, confidentiality, communication, empowerment, training, and safety & efficacy – and consider how to best guide the design of online portals in a context of regulatory uncertainty. (shrink)

Sending patients “home to fail” while anticipating their speedy readmittance is, prima facie, ethically troubling as are all unsafe discharges. However, “home to fail” cases may also be covertly ethically troubling insofar as they raise questions of medical paternalism due to a motivational component which drives these types of cases: by discharging a patient “home to fail” she will come to appreciate that living at home is unsafe and thus unwise, prompting her to choose differently in the future.

Uterine transplantation is an experimental procedure currently available only to cisgender women recipients suffering from absolute uterine factor infertility. Clinicians, researchers, and advocates have advanced the possibility of providing these quality-of-life transplantations to transgender women. This article examines the ethical and practical implications of removing sex- and gender-based requirements entirely for uterine transplantation recipients. Given the significant costs and risks, and the modest quality-of-life benefits, ethical arguments against offering uterine transplantations to people who do not identify as women but are (...) otherwise suitable recipients are dubious and prejudicial. Successful uterine transplantations with non-women recipients could potentially diminish the socio-cultural connection between uterine functionality and womanhood, which is a key motivation for women now seeking this high-risk procedure. (shrink)

The COVID-19 pandemic disrupted academic life worldwide for students as well as educators. The purpose of this study is to shed light on the collective adversity experienced by international medical students and bioethics educators caused by the COVID-19 pandemic in relation to both personal and academic life. The authors wrote their subjective memoirs and then analyzed them using a collective autoethnography method in order to find the similarities and differences between their experiences. The results reveal some consistent patterns in experience (...) that are captured in two metaphors: Falling apart and Bouncing back. “Falling apart” involves the breakdown of daily lives during the initial stages of the pandemic, shown through subjective quotes contextualized through the authors’ commentary. The consensus is that returning home and the transition to remote education were the two main reasons for the breakdown. “Bouncing back” encompasses the authors’ recovery after the initial breakdown, achieved by acquiring new information about the virus, discovering how to continue their hobbies at home, such as working out or dancing, and learning to adjust exam expectations. At the educational level, the bioethics course, which guided students through the ethical dilemmas of the pandemic, played an important role in the recovery/bouncing back process. For that reason, we report on how it was to learn about and teach this subject during the pandemic, and how bioethics knowledge was applied for better understanding and coping with some of the moral dilemmas related to the pandemic. The study testifies to the importance of bioethics education during a pandemic and explains how this can contribute to shaping the moral resilience of future medical practitioners. (shrink)

The allocation of critical care resources and triaging patients garnered a great deal of attention during the COVID-19 pandemic, but there is a paucity of guidance regarding the ethical aspects of resource allocation and patient prioritization in ‘normal’ circumstances for Canadian healthcare systems. One context where allocation and prioritization decisions are required are surgical waitlists, which have been globally exacerbated due to the COVID-19 pandemic. In this paper, we detail the process used to develop an ethics framework to support prioritization (...) for elective surgery at The Hospital for Sick Children, Toronto, a tertiary pediatric hospital. Our goal was to provide guidance for the more value-laden aspects of prioritization, particularly when clinical urgency alone is insufficient to dictate priority. With this goal in mind, we worked to capture familial, relational, and equity considerations. As part of our institution’s concerted efforts to ethically and effectively address our surgical backlog, an ethics working group was formed comprising clinicians from surgery, anesthesiology, intensive care, a hospital bioethicist, a parent advisor, and an academic bioethics researcher. A reflective equilibrium process was used to develop an ethics framework. To this end, the same methodology was used to create a support for patient prioritization that identifies clinically and morally relevant factors for prioritization among medically similar surgical cases, with a substantive goal being to identify and redress health inequities in surgical prioritization, inasmuch as this is possible. While further steps are needed to validate several aspects of the framework, our research suggests that an ethics framework grounded in the practical realities of hospital operations provides consistency, transparency, and needed support for decisions that are often left to individual clinicians, as well as an opportunity to reflect upon the presence of health inequities in all domains of healthcare delivery. (shrink)

The humanitarian sector continually faces organizational and operational challenges to respond to the needs of populations affected by war, disaster, displacement, and health emergencies. With the goal of improving the effectiveness and efficiency of response efforts, humanitarian innovation initiatives seek to develop, test, and scale a variety of novel and adapted practices, products, and systems. The innovation process raises important ethical considerations, such as appropriately engaging crisis-affected populations in defining problems and identifying potential solutions, mitigating risks, ensuring accountability, sharing benefits (...) fairly, and managing expectations. This paper aims to contribute to knowledge and practice regarding humanitarian innovation ethics and presents two components related to a value-sensitive approach to humanitarian innovation. First is a mapping of how ethical concepts are mobilized in values statements that have been produced by a diverse set of organizations involved in humanitarian innovation. Analyzing these documents, we identified six primary values (do-no-harm, autonomy, justice, accountability, sustainability, and inclusivity) around which we grouped 12 secondary values and 10 associated concepts. Second are two proposed activities that teams engaged in humanitarian innovation can employ to foreground values as they develop and refine their project’s design, and to anticipate and plan for challenges in enacting these values across the phases of their project. A deliberate and tangible approach to engaging with values within humanitarian innovation design can help to ground humanitarian innovation in ethical commitments by increasing shared understanding amongst team members, promoting attentiveness to values across the stages of innovation, and fostering capacities to anticipate and respond to ethically challenging situations. (shrink)

Most of us would agree with the almost trite saying that “life is a journey”. Of course it is, unless it ends tragically at birth, and even then it is a very short journey. All of us can describe how we got from one stage in life to another, whether personal, family, education or career. Many journeys seem to be in an almost straight line while others meander from one place to another, changing direction and alternating goals, sometimes zigging back (...) and forth. I have had many wonderful journeys in my life; the choice to change career aspirations from engineering to medicine, the choice the study in medicine in Scotland, the choice to focus on geriatrics and then the choice to branch out into medical ethics to add more depth to clinical medicine. The early undergraduate study of philosophy planted the seed that eventually grew into my completing a Master’s in Medical Ethics; and then expanding my teaching and practice to include palliative care and end of life-decision-making, to most recently participating in the assessment of those requesting medical assistance in dying (MAID in Canada). (shrink)

The attack on the written word is not new. It has happened many times through history, especially in modern times as the availability of books has grown so rapidly. It is most often in authoritarian regimes that books are deemed a potential threat, and the elimination of this threat a means to maintain control of a potentially rebellious population. Probably the most heinous of book banning and burnings occurred during Nazi rule, prior to and during the Second World War. To (...) witness, recently, in the United States the ugly head book banning and their removal from libraries is a sad commentary on the state of some senior politicians, including Governors and Judicial leaders. Fortunately, there is vigorous opposition to these efforts and notable successes in the quest for universal access to the world of books. (shrink)

In some families, there is an inseparable connection between showing love, caring, and providing food. These conceptual connections can create tension between families and care teams over end-of-life care for critically ill late-stage cachexic patients with cancer when families demand that their loved one receive feeds. This case study describes how to dissolve these tensions without compromising the family’s values or the medical team’s ethical duty of nonmaleficence.

In Ontario, adolescents can be confidentially prescribed contraceptives. However, some adolescents must pay pharmacies to have their confidentiality respected when it comes to contraceptives; if their parents’ private insurance plan covers them, the adolescent has to pay out of pocket to be given contraceptive in a confidential manner. It is unethical to make anyone pay to have their confidentiality respected, particularly for a vulnerable population like adolescents who tend to be economically disadvantaged.

In debates surrounding the biomedical enhancement of human morality, it is widely believed that morality was evolutionarily shaped to be rigidly tribal. Allen Buchanan challenges this assumption by making the case that a plastic morality that responds to our environment would be evolutionarily favored, and thus the best way to shape human morality going forward would not be through biomedical interventions, but by designing better institutions.

The COVID-19 pandemic has had a global effect. The disproportionate impact on Indigenous peoples and racialized groups has brought ethical challenges to the forefront in research and clinical practice. In Canada, the Tri-Council Policy Statement (TCPS2), and specifically the principle of justice, emphasizes additional care for individuals “whose circumstances make them vulnerable”, including Indigenous and racialized communities. In the absence of race-based data to measure and inform health research and clinical practice, we run the risk of causing more harm and (...) contributing to ongoing injustices. However, without an accepted framework for collecting, maintaining, and reporting race-based data in Canada, more guidance is needed on how to do this well. Importantly, a framework for collecting race-based data should build on existing guidance from Indigenous and other structurally marginalized communities, the TCPS2, recommendations from the World Health Organization, and involve relevant stakeholders. In this paper, we describe historical examples of unethical studies on Indigenous and racialized groups, discuss the challenges and potential benefits of collecting race-based data, and conclude with objectives for a pan-Canadian framework to inform how race-based data is collected, stored, and accessed in health research. (shrink)

Canada’s Medical Assistance in Dying (MAID) legislation changed in 2021; persons without a reasonably foreseeable natural death (RFND) could now be eligible for MAID and would have to wait at least 90 days before their intervention. This legislative change caused a new ethically complex question to arise, which we explore in this commentary, namely: Where should individuals without a RFND wait (for 90 days) in a publicly funded health system?

The complex health and social circumstances of living-at-risk, frequent users of emergency departments (aREDFUs) in the health jurisdictions of high-income countries, and the related, significant challenges posed for emergency departments and the health care providers working within them, are identified and explored in the paper. Ethical analyses of a set of relevant domains are performed, i.e., individual and relational autonomy considerations, relevant social construction and personal responsibility conceptions, patient welfare principles (beneficence, nonmaleficence, continuity of care), harm reduction methodologies and their (...) applications, health equity, and justice considerations of the distributive, formal and social types. The outcomes of these analyses demonstrate that there are ethically compelling reasons for emergency departments to adopt an ethics-informed, policy-based approach to the longitudinal care and management of living-at-risk, frequent users of emergency departments. From a formal justice perspective, the development and uses of such an approach are justified by a demonstrable relevant difference between living-at-risk, frequent users of emergency departments and other persons and groups of patients who visit emergency departments. We propose an example of such a policy-based approach. Examples of possible, pragmatic applications of this approach, which help ensure that aREDFUs who present to the ED are managed in a fair and optimally consistent manner, are provided for the consideration of an urban emergency department’s policymaking working group. (shrink)

Clinical ethics is widely recognised as an essential contribution to the quality of health and psychosocial service delivery. However, the lack of a common understanding of ethics within teams and insufficient organisational support often limits its optimal integration into the workplace. To address this problem, the clinical ethics committee of a rehabilitation centre developed a new clinical ethics framework based on a theoretical model and conducted a pre-implementation evaluation by interviewing future users. The study estimated the acceptability and initial adoption (...) of the new clinical ethics framework. The quantitative results of the study indicated a high level of acceptability for the definitions, tools and supporting strategies, with the exception of the definition of the concept of ethical issues. The qualitative results showed that the future users perceived positively the attributes of the new framework, such as its benefits and its compatibility with their professional concerns. In addition, they appreciated the fact that the framework was easy to understand and could potentially be applied in daily practice. The suggestions provided by future users also helped to improve the content of the clinical ethics framework. Finally, all the results will be useful for the planification of its eventual implementation. (shrink)

In the aftermath of the ongoing COVID-19 pandemic, there is a predicted (and emerging) increase in experiences of mental illness. This phenomenon has been described as “the next pandemic”, suggesting that the concepts used to understand and respond to the COVID-19 pandemic are being transferred to conceptualize mental illness. The COVID-19 pandemic was, and continues to be, framed in public media using military metaphors, which can potentially migrate to conceptualizations of mental illness along with pandemic rhetoric. Given that metaphors shape (...) what is considered justifiable action, and how we understand justice, I argue we have a moral responsibility to interrogate who benefits and who is harmed by the language and underlying conceptualizations this rhetoric legitimates. By exploring how military metaphors have been used in the context of COVID-19, I argue that this rhetoric has been used to justify ongoing harm to marginalized groups while further entrenching established systems of power. Given this history, I present what it may look like were military metaphors used to conceptualize a “mental illness pandemic”, what actions this might legitimate and render inconceivable, and who is likely to benefit and be harmed by such rhetorically justified actions. (shrink)

This Perspective sheds light on the major barriers behind Asian American invisibility in bioethics, such as the inconsistencies in defining a coherent identity in North American society, the systemic mechanisms of invisibility from history to healthcare based on immigration status, and scarcity of bioethics literature about their perspectives. The consequences of Asian American invisibility in bioethics and healthcare practises are also discussed, including a reflection of the interconnected mechanisms between academic bioethical theory and healthcare practises that perpetuate Asian American invisibility. (...) Finally, recommendations are provided to begin a critical reflection of bioethical theory with Asian Americans in mind. This serves as the stepping-stone for future discussions on Asian American bioethics, to highlight a missing perspective in North American race-based activism regarding the equity, diversity, and inclusion of an underrepresented demographic. (shrink)

Being a surrogate decision-maker is challenging for many people and having to decide to withdraw life sustaining therapies can be extremely difficult. Helping surrogates to refocus their decisions on informed non-dissent can greatly minimize unnecessary suffering for all involved. This case study describes how dignitary harm was minimized by using the concept of informed non-dissent.

We were astonished to read a recent media news item about a 51-year-old woman in Ontario who was offered and accepted medical assistance in dying (MAID) because she was experiencing multiple chemical sensitivities, also known by its preferred diagnostic term, idiopathic environmental intolerance (IEI). Reportedly, she could not access appropriate housing. We find this concerning, as providing MAID to individuals with refractory IEI symptoms on the basis of housing unavailability implies that there were no better management options available. This case (...) should prompt ethical reflection on whether our supports for the most vulnerable enable them to maintain basic human dignity, and whether systemic societal action in other ways could better support people with IEI. (shrink)

In this critical commentary, a set of ethical considerations of relevance to the (currently contested) interpretation of irremediability for medical assistance in dying (MAiD) in circumstances where the sole-underlying medical condition is a mental health disorder is explored and analyzed. Based on the application of an ethics lens, a practical description of irremediability is proposed for intended use as guidance by Canadian mental health care clinicians, MAiD assessors and providers, and provincial/territorial professional regulatory authorities.

“Rite of Passage” describes a court case raised by an android/artificial intelligence who wishes to apply for citizenship but can only do so if recognized as a human. Among others, the case exposes the vague definition of the term “human”, and the trouble of supplying evidence of sentience or consciousness even in humans. The ethical problems involved in the story can be ascribed to many actual events, among them the recent debate on splicing monkey and human DNA for the sake (...) of producing hybrids with organs suitable for transplantation. The story also touches upon ethical conflicts with regards to endangered wildlife, global warming, media exploitation, commodification, and labor unions. (shrink)

Analgesia and amnesia represent two complimentary pillars of anesthesia directed, respectively, at mitigating the experience of pain and the processes of encoding that experience into memory. These elements are typically combined in modern anesthetic techniques, but some circumstances exist – such as conscious sedation – in which the conditions of amnesia are satisfied while analgesia plays an auxiliary and often incomplete role. These activities reflect a widely held yet underrecognized belief in clinical practice that although pain experiences may be short-lived, (...) their representation in memory and its subsequent effects on thought and emotion can have enduring consequences for patients. In this exploratory article, we delineate phenomenal and abstract ontological categories of pain experience; advance a claim that they are treated by analgesic and amnestic agents, respectively; and describe how each class of experience is uniquely able to bring about individual harm. Beginning with the question of how it can be permissible to allow any preventable experiences or memories of pain, we identify that both phenomenal and abstract pain manifest on a spectrum of severity, each with an enigmatic threshold – unique to circumstance and individual – that determines whether or not pain will translate into harm, and what permissions therefore surround its treatment. Ultimately, we find that there are compelling physiological reasons for the concurrent use of analgesics and amnestics when pain experience exceeds these thresholds, while the treatment of “sub-threshold” experience in either class is a purely ethical imperative to be balanced with considerations of the potential harms posed by the treatments themselves. (shrink)

Bioethics experts played a key role in ensuring a coherent ethical response to the COVID-19 pandemic in the fields of healthcare, public health, and scientific research in Canada. In the province of Quebec, a group of academic and practicing bioethicists met periodically in the early months of the pandemic to discuss approaches and solutions to ethical dilemmas encountered during the crisis. These meetings created the opportunity for a national survey of bioethics practitioners from different fields. The survey, in which forty-five (...) Canadian bioethics practitioners (clinical ethicists, ethicist members of REBs and government health policy ethicists, or any bioethicist practicing outside of academia) participated, explored their concerns, challenges and opportunities during the first wave of the pandemic, with the objective of informing bioethics research about the difficulties experienced by bioethicists “in the field”. Participants reported increased stress levels, increased workloads, and a greater proportion of their work being devoted to public health ethics. Most of their concerns focused on groups other than themselves, such as health professionals, patients, research participants, and people in vulnerable socio-economic situations. An optimism about the future of bioethics was noted due to an increased awareness of the importance of bioethics by the public and by health and research institutions. (shrink)

Artificial intelligence (AI) is increasingly being developed and implemented in healthcare. This presents privacy issues since many AIs are privately owned and rely on data sharing arrangements for mass quantities of patient health information. We investigated the Canadian legal and policy framework focusing on regulation relevant to the potential for inappropriate use or disclosure of personal health information by private AI companies. This included analysis of federal and provincial legislation, common law and research ethics policy. Our evaluation of the various (...) regulatory frameworks found that together they require private AI companies and their partners in healthcare implementation to meet high standards of privacy protection that prioritize patient autonomy, with limited exceptions. We found that healthcare AI systems are required to be consistent with the rules and foundational ethical norms enshrined in law and research ethics, even if this poses challenges to implementation. Data sharing arrangements must focus on tight integration with high levels of data security, strong oversight and retention of patient control over data. (shrink)

Guidelines for clerkship training at one Canadian medical school – Western University’s Schulich School of Medicine and Dentistry – did not state the ethical principles associated with the decision to suspend and eventually resume clinical training during the COVID-19 pandemic. The absence of stated ethical principles was notable considering the impact these decisions had on various stakeholders, and since ethics plays a large role in the practice of medicine. This study assessed these guidelines using an ethical lens approach to identify (...) ethical principles and tensions implicit in the guidelines. Clerkship is defined as the third year of training at this medical school, which consists of clinical rotations. While ethical principles were not documented, it was hypothesized that these could be identified within the guidelines. A literature search was conducted, which yielded a gap in knowledge concerning ethical considerations of clerkship clinical training. The guidelines were analyzed and ethical principles and tensions between conflicting principles were identified. The most prevalent principles were beneficence and non-maleficence. It is recommended that in the future, the ethical principles associated with guidelines responding to significant issues affecting undergraduate medical education be stated, in order to increase transparency to all parties involved, enhance communication with students, and to serve as an example of how ethics is applied in a medical education setting. One limitation of this study was the use of internal guideline documents, which were circulated internally but are not published. (shrink)

The value that bioethics has added to the discourse between science and the humanities is indispensable. However, there is a need that when bioethics is taught that the focus be not solely on the identification and analysis of the problem, but also on critical reflection to enable a student to internalize that which they have experienced. This article provides an analytical description of the use of learning logs as a tool of reflection and metacognition in bioethics courses, based on the (...) experience of educators at the Faculty of Sciences of the Universidad de la República (Uruguay). An analysis of students’ learning logs shows that this tool promotes complex reflective and self-reflective processes in which the development of skills such as abstraction, argumentation and problematization is manifested in an integrated way. (shrink)

In this case study, we describe an approach to dealing with a complicated, systemic, and multi-faceted organizational issue: the continuum of maternal care from antepartum care, birthing, to post-natal care.

Bioethicists have long advocated for patients’ rights by deliberating on what physicians should or should not do for the well-being of patients. Part of this advocacy has involved challenging a paternalistic medical model where physicians are seen as authoritative figures above reproach. Through ombudsperson offices, patients can submit complaints that may lead to medical examiners conducting detailed examinations of physicians’ conduct and decision-making. Prior research indicates that complaints can have serious and broad effects on physicians. We conducted a scoping review (...) to explore and evaluate the extent of the quantitative and qualitative literature examining the effects of complaints on physicians in European and Commonwealth countries. We systematically searched electronic databases (CINAHL, MEDLINE and PsycInfo) and grey literature for primary research that collected information directly from physicians on at least one potential effect of formal complaints. After screening the titles/abstracts of 14,913 records and reviewing 137 full-texts, 25 studies were included. The 25 studies reported on several potential effects, including the patient-physician relationship (3 studies), defensive medicine (14 studies), anxiety (8 studies), depression (8 studies), one’s identity as a physician (5 studies), and anger (5 studies). Generally, the effects evaluated in the included studies were negative. Although the existing literature covered a range of possible effects, few studies assessed the same effects via different methods, and in different regions and contexts. The findings of this scoping review suggest that complaints processes can have negative effects on physicians. (shrink)

Fairness and justice are longstanding constructs in the discussions around ethics and morality. And fairness, or the principle of procedural fairness, as the bedrock of Ombuds practice in Canada, creates a responsibility for Ombuds to advance and hold institutions and individuals accountable to ethical processes and decisions. While effective conflict engagement forms a significant part of our work as well, Canadian Ombuds practice is firmly founded on and delivered through a fairness lens. Fairness has been described as a flexible and (...) context-specific construct, its content to be determined by the individual circumstances of the case. In this flexible approach lies the opportunity for Ombuds to help humanize bureaucracy for those who must navigate it, by encouraging rules, processes and decisions that support the diversity and multiplicity of contexts, experiences and perspectives. It gives Ombuds a way to define fairness that does not mean treating everyone the same, which is an interpretation of “fairness” that actually creates and perpetuates inequity and unfairness. This is supported by Canadian jurisprudence from the Supreme Court of Canada that embeds equality and inclusivity into the concept of fairness. The Charter of Rights and Freedoms, Canadian values and the diversity of the Canadian populace inform the standard of fairness in a way that support Ombuds to advance fairness in a way that is inextricable from equity. (shrink)

Overstretched resources and steady increases in the number of complaints filed with the offices of the Quebec Service Quality and Complaints Commissioner prompted us to investigate the complaint-handling systems of health-related organizations operating in Commonwealth and Western European countries. We also examined guidelines used to identify higher priority files (i.e., urgent files). Urgent files can then be prioritized in terms of the time taken to provide a conclusion as well as the depth of the examination. A system where a small (...) fraction of complaints is deemed “urgent” was preferred over systems where complaints are categorized into three or more priority levels, because files categorized in the lowest of three or more priority levels risk being neglected. Applying lessons from other systems and considering the Service Quality and Complaints Commissioner’s mandate, we identified three guiding criteria for determining whether files warrant urgent status: threat to safety, involvement of vulnerable person(s) and risk of recurrence (but only when coupled with safety issues). Since determining which files should be considered urgent is not straight forward, these broad criteria can be adapted and applied on a case-by-case basis. (shrink)

This commentary invites reflection on the positive and negative outcomes of “assistances” provided by a Complaints Commissioner. While the goal of an assistance is to help the user navigate the health system, a lack of clarity and understanding of the process can lead to the user obtaining undue privileges. We suggest three key values to guide the equitable conduct of assistances and we suggest a mixed method research methodology to document the positive and negative impacts of assistances.

How might an ombudsperson respond to an equity concern? Using a real-to-life case study about student / faculty conflict brought to a university ombudsperson, we consider the value of a fairness lens that an ombuds can bring to EDI ethical discussions.

After 50 years of institutional history in Canada, the focus of ombuds has shifted from resolving individual complaints to improving the quality of government services for all. New tools in the ombuds world enabled the conceptualization and promotion of administrative fairness. Ombuds’ acquired expertise, which, shared with government, improved the delivery of services. Public systemic investigations are now seen as the ultimate expression of ombuds effectiveness. Consistent dialogue with public servants and organisational administrators inevitably links ombuds to policy networks. While (...) informal links to policy networks can help ombuds resolve cases, they can also inadvertently create distance between ombuds and complainants. A former ombuds officer at Columbia University, Marsha Wagner emphasizes the importance of identifying systemic issues in ombuds practice, i.e., ombuds who do not focus on systemic issues may be derided as “wannabes”. This article suggests the pendulum has swung too far from the individual complainant to a systemic focus and urges caution in contemporary ombudship. (shrink)

This story explores the relationship between artificial intelligences and humans in a future global warming context.

Bioethics, like the sixteenth-century commedia dell’arte, is a master of revelation. At the heart of this is a propensity to highlight that what we see is as much truthful and elegant as it is made up of pretence and staging. Must we persuade ourselves that what is false is not false, that what is true is changeable and fragile? Is it possible to serve two masters? Is it possible to get by without antics and disgrace? The Odelet is at once (...) a cryptic portent of the past, present and future of bioethics and a reflection on the capacity of the field to act as a motor for social change. (shrink)

Managing non-communicable diseases in crisis-affected and fragile humanitarian contexts requires special attention because primary health care systems often collapse or become compromised in such settings. As a result, addressing and managing these diseases become more challenging. Humanitarian organizations that intervene in crisis situations are increasingly including NCD management in the services they support and provide; however, they encounter a range of issues such as ensuring the quality of care, sustainability of programs, and the possibility of unintended harms. This case study (...) explores ethical considerations raised by a mobile NCD program run by an international humanitarian organization in a country affected by a protracted civil war. (shrink)

Individuals with intersex variations fall outside the normative sex binary of male and female for various reasons. These individuals are highly stigmatized and discriminated against in the legal, medical and social spheres. In this paper, we analyze manifestations of such discrimination in the healthcare context and hypothesize that Patient Centred Care and Shared Decision Making approaches are improperly practiced with intersex individuals. Through a narrative review of current literature, we present evidence of improper practice of PCC and SDM and its (...) effects on intersex individuals and, in the pediatric context, their parents. Misinformation by medical practitioners to parents of intersex individuals promotes the perpetuation of unnecessary surgical interventions. We propose strategies to improve intersex medical care, including better adherence to SDM and PCC guidelines as well as the sociocultural normalisation of intersex identity. Current perceptions of surgical interventions done on intersex infants and children need to better align with evidence-based physical and psychological health risks. All these strategies are part of preserving the autonomy and physical integrity of intersex individuals and ensuring that their well-being remains at the heart of their care in the medical context. (shrink)

The purpose of this commentary is to consider circumstances under which it may be ethical to permit patients to use licit substances in rehabilitation contexts. While the content of this commentary may be transferable to other healthcare spaces, our focus on rehabilitation is based on some important distinctions that exist between rehabilitation and acute care spaces.

CRISPR is currently viewed as the central tool for future gene therapy. Yet, many prominent scientists and bioethicists have expressed ethical concerns around CRISPR gene therapy. This paper provides a critical review of concerns about CRISPR gene therapy as expressed in the mainstream academic literature, paired with replies also generally found in that literature. The expressed concerns can be categorised into three types depending on whether they stress risk/benefit ratio, autonomy and informed consent, or concerns related to various aspects of (...) justice. In the reviewed literature, we found no intrinsic objections to CRISPR gene therapy, even though many such objections were present in discussions of gene editing in the 1990s. The paper then proposes a brief outline for a practically applicable moral framework for public decision-making about CRISPR gene therapy and suggests how such a framework might be supported. We also suggest that this framework should govern public engagement about CRISPR gene therapy in order to reduce the risk that we make decisions about CRISPR gene therapy based on misperceptions, inflated views of risk, or unreasonable moral or religious views. (shrink)

Recent evidence shows significant potential for therapies involving psychedelic substances such as psilocybin and MDMA to improve clinical outcomes for patients experiencing various mental disorders. However, research to date focuses almost exclusively on adults. I argue that adolescents should be included in research into psychedelic therapies. First, I demonstrate the pressing need for novel interventions to address the growing mental health burden of adolescents, and I draw on empirical evidence to show that research into psychedelic therapies presents an opportunity to (...) address this shortfall. Secondly, I argue that psychedelics pose low risk to young patients, particularly relative to existing psychiatric medications. I then address two major concerns specific to adolescent contexts. First, I address the risks of using psychedelic substances at earlier stages of physiological and cognitive development. I note that the lack of understanding of the risks underscores the need for including adolescents in research. I then address the added complexity of consent in the adolescent context. I highlight some additional concerns that should be addressed in an “enhanced” informed consent process for adolescents and defend the view that capable adolescents should be able to consent to psychedelic interventions. I ultimately hold that including adolescents in emerging psychedelic research has the potential to substantiate innovative treatments that could improve their clinical outcomes, long-term mental health and quality of life. (shrink)

Recruitment of study participants from marginalized populations present unique challenges for researchers and associated institutions. Researchers must be aware of the specific adaptations required in the research process in conducting research within and Indigenous populations. Cultural consciousness is key with any research conducted within these populations to understand the past issues that can influence present and future willingness to participate in research. This article aims to provide context and examples where increasing cultural awareness of specific ethical principles during the recruitment (...) phase can affect the study process as well as the researcher themselves. Integrating Indigenous cultural concepts within the recruitment and study design process can help to lay the groundwork for a positive research process as a whole and facilitate an appropriate study environment for all involved. (shrink)

Despite the international 3Rs principles that recommends replacing, reducing and refining the use of animals in medical experimentation, it remains difficult to obtain funding in Canada for medical research that respects these principles, particularly with regard to replacement. This observation led our team to review the literature on the arguments for and against animal experimentation in the fields of oncology and radiobiology. This article presents a synthesis of these arguments. Using the method created by McCullough and colleagues to conduct critical (...) reviews of the ethics literature, we analysed 25 texts discussing the arguments for and against animal experimentation in oncology and radiobiology. Six broad categories of arguments for animal experimentation and eleven categories of arguments against it emerged from our analyses. Furthermore, the arguments against animal testing are more convincing from both an empirical and normative perspective. Also, most arguments obtained are transferable in other fields of medicine. In addition to the literature review, a critical reflection was conducted and other arguments were discussed. It seems that a conservative culture persists in medical research, despite the scientific evidence and ethical arguments to the contrary. (shrink)

The main objection to genetic enhancement is that it will create a “genetic apartheid,” deepening existing inequalities. This paper offers considerations that can weaken the inequality argument against genetic enhancement. First, I question the dichotomy of treatment versus enhancement since the differences between the two are unclear. Second, I argue that human enhancement is part of human nature and that there is no sound reason to accept it in other domains while rejecting it in genetics. The paper also demonstrates that (...) inequality is present in every dimension of society, that “God-given” genetics is profoundly unequal, and that genetic enhancement can operate as a mechanism by which a new genetic equality can be achieved. However, the paper underlines that genetic equality is not, per se, a value to which we ought to aspire if it leads us to a uniform community of downsized human beings. Genetic equality is only valuable if it enhances humankind in general. (shrink)

Background: Informed consent is an ethical and legal obligation protected by constitutional rights to bodily integrity, well-being, and privacy in South Africa. The National Health Act 2003 codified IC regulations, requiring that all healthcare professionals inform patients about diagnosis, risks, benefits, options, and refusal rights while factoring in patients’ language and literacy levels. Objectives: This study’s primary aim was to determine the extent of South African professional/staff nurses’ compliance with current IC regulations and ascertain socio-cultural impediments impacting proper IC practice. (...) Methods: A cross-sectional survey using semi-structured questionnaires was used to evaluate knowledge and practice of IC among nurses in KwaZulu-Natal province. Data were analyzed using SPSS, v.21. Descriptive statistics, chi-squared tests, and content analysis were used to compare nursing domains. Results: Three hundred fifty-five nurses, 92% females, with 1 to 41 years of professional experience, completed this study. Information disclosed by nurses to patients included diagnosis, treatment benefits, risks, recommendations, risks of refusal, and right of refusal. Nurses felt information disclosure was adequate, while 85% reported that patients understood disclosed information. Conclusions: Nurses practicing in local public hospitals had moderate knowledge of IC regulations. Practical implementation appeared deficient. Barriers to IC included language, workload, time constraints, lack of interpreters, and skewed gender norms in the nursing profession. Nurses require continuing professional education in healthcare law and ethics, a “corps of trained interpreters”, and gender transformation in the nursing profession to improve IC practice and overall quality of healthcare service delivery in South Africa. (shrink)

Attending to racism and US bioethics raises the question of whether and how racism in bioethics has been the subject of bioethical scrutiny. Bioethics has certainly brought its analytical tools to bear on racist aspects of clinical care and biomedical research. But has bioethics studied racism in bioethics as its subject? A close examination of relevant reports, articles, and books in the US bioethics literature published in the early days of the field, pre-2000, shows mixed findings. In the 1970s, racism (...) as a bioethical concern was variously nonexistent, vaguely implied, and powerfully examined and condemned. In the late 1980s/early to mid-1990s, racism was more frequently described and critiqued, often in the context of discussions about African American perspectives of biomedical ethics and inequities in health care. Understanding how racism in bioethics has been addressed as an ethical concern has consequences for the historical narratives told about the field, for antiracist bioethics work today, and for envisioning an antiracist future for bioethics. (shrink)

In this critical commentary, we address the egalitarian critique according to which the use of a vaccine passport is unethical because it conflicts with the principle of equality, understood as requiring that citizens ought to be treated in the same way. We argue that this criticism is vulnerable to the levelling-down objection often addressed to some egalitarian theories. We add that the vaccine passport is morally justified if two minimal ethical conditions are satisfied: 1) it must be designed as a (...) temporary and transitory public health restriction, and 2) the disparities of treatment it introduces ought to infringe as little as possible upon fundamental rights and should not negate access to essential public services. (shrink)

Concerns of moral distress in health care have never been more relevant. In her book, Health Care Ethics Through the Lens of Moral Distress, Kristen Jones-Bonofiglio provides a comprehensive review of the effects of moral distress on providers and health care delivery, while highlighting the complexities of making ethical decisions in practice. Jones-Bonofiglio’s thoroughness and use of interdisciplinary, historical, and cultural scholarship makes this book an excellent introductory resource on moral distress for health care providers and researchers alike.

The commentary analyses ethical dilemmas faced by the global community during the coronavirus pandemic. The importance of the intellectual property rights in the context of vaccine distribution is particularly emphasized. The authors highlight bioethical principles – “forgotten” but so significant – in the context of vaccine distribution.

It is not uncommon for families to wait in hopes of receiving test results that show a treatable mutation, such as in the case of lung cancer. Waiting for such test results can distract families from focusing on a patient’s current pain and suffering, especially when families experience heightened emotions and anticipatory grief. The substituted judgement standard can be helpful in resolving ethical dilemmas by encouraging families to think about what decision a patient would have made if competent, thus preventing (...) unnecessary pain and suffering. This case study sheds light on how the substituted judgement standard was used with a patient’s family and how the family’s hope for a treatable mutation affected their perception of the patient’s clinical condition. (shrink)

Re-contacting minors enrolled in research upon their reaching the age of majority or maturity to seek their autonomous consent to continue their participation is considered an ethical requirement. This issue has generally been studied in the context of minors who are actively involved in the research. However, what becomes of this issue when the minor has been withdrawn from the research or has been lost to follow-up? May researchers re-contact the minor at the age of majority or maturity under these (...) circumstances to seek the consent of the minor to re-join the research? In this paper, we explore the ethical permissibility of recontacting minors whose participation in research has ended, once they have reached the age of majority or maturity. In particular, we identify scenarios in which the participation of a minor in a research project may end and discuss factors that can help determine such an ethical permissibility. Finally, we discuss the practical and ethical challenges of re-contact and present re-consent models that may be used by researchers. (shrink)

Applying two theories to complex contexts results in a more well-rounded case analysis. This case, involving a Latinx family within pediatrics, requires a multi-faceted approach to better evaluate the culturally specific needs of the patient and the family system. A Mujerista theological approach highlights the subjective nature of family values and lived wisdom. This Mujerista approach adds another dimension, along with a Family Interest Model, for medical decision making.

Epigenetics – the study of mechanisms that influence and modify gene expression – is providing unique insights into how an individual’s social and physical environment impact the body at a molecular level, particularly in populations that experience stigmatization and trauma. Researchers are employing epigenetic studies to illuminate how epigenetic modifications lead to imbalances in health outcomes for vulnerable populations. However, the investigation of factors that render a population epigenetically vulnerable present particular ethical and methodological challenges. Here we are concerned with (...) demonstrating how, in targeting certain populations for epigenetic research, this research may be pathologizing socio-cultural and medical practices in those populations in a way that increases their vulnerability. Using a case study approach, this article examines three vulnerable populations currently of interest to epigenetic researchers – Indigenous, autistic, and transgender populations – in order to highlight some of the challenges of conducting non-stigmatizing research in epigenetics. (shrink)

The Health Research Ethics Authority Act was established to ensure that research ethics review of all human health research in the province of Newfoundland and Labrador is conducted by a local, in-province, Research Ethics Board. The HREA Act arose as a result of complaints by patients and family members enrolled in a clinical genetics research study being conducted by a team of researchers from outside the province who failed to provide appropriate clinical follow-up. This review provides a record of the (...) steps taken to draft the legislation and prepare for proclamation and includes information on the key stakeholders involved in the process. The review also provides a brief commentary on the HREA, and the newly formed Health Research Ethics Board, in the years following proclamation and how the HREA aligns with national interests for harmonizing research ethics review across multiple REBs. At the outset, the process was envisioned as simply moving to a provincially legislated research ethics board; however, the actual task involved establishing a new entity to oversee research ethics review and expanding or enhancing the office required to manage this research ethics review oversight. The task for the working committees involved in establishing the legislation was more complex than envisioned by the partner organizations, the government of Newfoundland and Labrador, Memorial University of Newfoundland and the Eastern Health Authority, and the workload and time to establish and proclaim the legislation was more involved than anticipated. (shrink)

Introduction: Non-invasive prenatal testing allows for genetic testing of a fetus through the analysis of cell-free DNA from the mother’s plasma. NIPT is easy and safe for the fetus, since it only requires a blood draw from the mother and therefore holds no risk of miscarriage. It is considered superior to other prenatal screening tests and can also be performed earlier in the pregnancy. NIPT has the future potential for fetal whole genome sequencing for an expanded range of conditions, such (...) as late onset genetic conditions and carrier status. Objective: To review ethical, legal, social, and policy implications of the potential use of non-invasive prenatal testing for FWGS. Methods: This study is a critical interpretive literature review exploring and reporting ethical, legal, social, and policy implications of potential future implementation of NIPT for FWGS, which will be referred to as non-invasive prenatal whole genome sequencing. Database and reference list searching was conducted between 2010 and 2019 for terms related to “non-invasive prenatal testing” AND “fetal whole genome sequencing” and derivatives. Results: Following screening, 32 articles were included. Data were grouped into four thematic categories: 1) ethical implications for the future child concerning autonomy and harms, as well as for prospective parents involving autonomy, informed consent concerns, and harms; 2) legal implications including privacy concerns; 3) social implications including changes in family dynamics, altered societal perceptions and disability concerns, justice and equity in accessing the test, and social pressure to use the test; and 4) policy implications including cost and funding concerns, limiting the scope of testing, as well as counseling, education, and support. Discussion: The discussion of results highlights several ethical, legal, social, and policy implications of NIPT use for FWGS. These findings have implications on NIPT implementation for FWGS including how the autonomy of the future child should be balanced with the autonomy of prospective parents, the scope of conditions that should or should not be tested for – and covered or not covered by the healthcare system – and the regulation of FWGS introduction, among others. Further research needs to be performed to address these concerns and hence guide the discussion about the clinical implementation of FWGS through NIPT. (shrink)

When Van Rensselaer Potter coined the English word “bioethics”, he envisioned a field that would bring together biological understanding and ethical values to address global environmental problems. Following Potter’s broad vision of bioethics, I explore ethical ideas that we need to address climate change. However, I develop and emphasize ideas about justice and responsibility in ways that Potter did not. At key points, I contrast the ideas that I develop with those in Potter’s work, but I try to avoid scholarly (...) debates and stay focused on the practical task: developing ideas to help us address climate change. To begin, I describe the problem of climate change. Then I show how it raises deep and serious issues of justice. Since the issues of justice are relatively clear and compelling, I proceed to focus attention on issues of responsibility – on why and how to respond to the structural injustices of climate change. I also note how my emphasis on justice and responsibility raises two new issues. To conclude, I mention the role of ecological citizens in bringing about social change. (shrink)

Most research ethics literature on vulnerability focuses on the vulnerability of individuals and populations defined by the potential vulnerability of their members. However, research involving human participants does not always take the individual as the unit of analysis: political experiments may apply an intervention to a community as a whole. This paper argues that community-level vulnerability is not reducible to the sum of the vulnerabilities of community members, and that there is thus a need to consider vulnerability at the community (...) level of analysis when analyzing the ethical implications of political field experiments. I first review ethical literature on community intervention research and the emerging scholarship on the ethics of political field experiments. I then highlight key accounts of the concept of vulnerability at an individual level. Drawing on Whitfield’s concept of “collective wrongs,” I argue that communities can be negatively affected in ways that are distinct from harms to individual community members, and that variation in susceptibility to such wrongs at the community level is largely consistent with existing conceptualizations of vulnerability. I suggest questions that researchers should consider when designing political field experiments to ensure that community-level vulnerabilities are taken into account. (shrink)

Being truthful with patients is a critical foundation of the doctor-patient relationship and is fundamental to development of trust. A professional commitment to truth telling may sometimes contradict other principles of bioethics, which may challenge decision-making for the doctor and/or the treatment team. Practitioners may fail to address all ethical or legal aspects of a case and therefore make inappropriate decisions.

The ethical conduct of research in any setting hinges on the voluntary and informed consent of research participants. Working towards consent that is truly voluntary and informed, however, is far from straightforward, and requires attention to contextual factors that may complicate achievement of this ideal in specific research settings. This paper is based on Madagascar’s first “Consent complexities in health research in Madagascar” workshop, held in Antananarivo, Madagascar, in October 2018. It identifies a number of challenges encountered by individuals responsible (...) for the conduct or oversight of health research in Madagascar related to informed and voluntary consent. Key challenges identified included: adaptation of consent tools into local dialects and for limited literacy populations; perceived acquiescence of potential participants regardless of actual preference based on cultural norms; perceived time pressures within tight project timelines to collect data as quickly as possible, limited time for consent processes; fears and taboos related to specific research procedures or topics; and, uncertainty about how best to approach and verify the validity of individual consent in contexts where traditional leaders’ influence is conventionally sought out and respected. Potential strategies for responding to each of these challenges are proposed, as are key questions meriting further study. (shrink)

Although Canada recently expanded access to medical assistance in dying, intolerably suffering Canadians with dementia still face seven obstacles to qualify for MAID. Advance directives for VSED are an important, yet under-appreciated, alternative.

The recent passing of Bill C-7 has placed Advance Requests for MAID on Canada’s legislative agenda. We discuss how ARMs may create ethical and practical challenges for Canadian medical practice.

Background: In Quebec, medical aid in dying is legal under certain conditions. Access is currently restricted to patients who are able to consent at the time of the act, which excludes most people with dementia at an advanced stage. However, recent legislative and political developments have opened the door to an extension of the legislation that could give them access to MAiD. Our study aimed to explore the attitudes of people with early-stage dementia toward MAiD should it become accessible to (...) them. Methods: We used a qualitative descriptive design consisting of eight face-to-face semi-structured interviews with persons living with early-stage Alzheimer’s disease, followed by a thematic analysis of the contents of the interviews. Results and Interpretations: Analysis revealed three main themes: 1) favourable to MAiD; 2) avoiding advanced dementia; and 3) disposition to request MAiD. Most participants anticipated dementia to be a painful experience. The main reasons for supporting MAiD were to avoid cognitive loss, dependence on others for their basic needs, and suffering for both themselves and their loved ones. Every participant said that they would ask for MAiD at some point should it become available to incompetent patients and most wished that it would be legal to access it through a request written before losing capacity. Conclusion: The reasons for which persons with Alzheimer’s disease want MAiD are related to the particular trajectory of the disease. Any policy to extend MAiD to incompetent patients should take their perspective into account. (shrink)

The moral significance of the distinction between killing and allowing to die has played a key role in debates about euthanasia and physician assisted suicide. Since the withdrawal of life-sustaining treatment is held as morally permissible in the medical community, it follows that if there is no morally significant difference between killing and allowing to die, then there is no morally significant difference between withdrawing life-sustaining treatment or administering a lethal injection to end a patient’s life. Consistency then requires that (...) voluntary active euthanasia is also morally permissible. The debates over whether the distinction is morally significant have carried on for decades with little hope of consensus. We begin by surveying the literature to identify common argumentative strategies used in defending or rejecting the distinction’s significance. We observe, based on our review, that many of these strategies operate in ways that are conceptually removed from the concrete clinical situation of physicians involved in practices that lead to patient death. We conclude by arguing for a novel way of moving the debate forward indicated by our reading of the literature, namely, by paying careful attention to the moral experience of physicians involved in end-of-life interventions to understand how they experience these practices. Exploring physician experience can reveal how the distinction may or may not be useful for moral deliberation and can provide the needed context to theorize about the distinction in a more empirically informed and practically useful way. (shrink)

This paper clarifies some of the longstanding difficulties in negotiating Do Not Resuscitate Orders by reframing the source of the dilemmas as not residing with either the patient or the physician but with their relationship. The recommendations are low cost and low-tech ways of making major improvements to the care and quality of life of the most ill patients in hospital. With impending physician-assisted death legislation there is an urgency to find more efficient and beneficial ways for clinicians and patients (...) to address resuscitation issues at the bedside. Paradigmatic shifts in the nature of the patient-physician relationship will need to be encouraged by the larger community. These encouraged shifts address the concepts of passive/inferior patient – active/superior physician, patient ownership of and access to all their health care information, and treating the patient as a major participant in the delivery of health care. These recommended changes will not in themselves make any patient, physician or other healthcare provider more humane and open in the patient’s final days. The goal, instead, is to have changes to the context of the discussion provide an encouraging environment for more open communication and a balanced relationship among participants with the patient being the most important. (shrink)

Medical assistance in dying is unique among the arsenal of medical therapeutics though it does return us to a dilemma Hippocrates addressed 2400 years ago. It provides welcome relief for suffering patients and their families, but MAiD is not suicide – it is invited homicide. It is more like a death ritual than a therapeutic procedure. Unlike medical interventions, MAiD cures no diseases and true informed consent cannot be obtained. It separates the body from the soul and perceived doctors’ errors (...) are punishable through criminal prosecution. If badly administered, it could undermine trust in the medical profession. The providers are also at risk for delayed remorse. As the inclusion criteria for MAiD become more relaxed, doctors who currently decide on candidates for MAiD should have access to established panels for guidance. The panels should include legal and ethical specialists. (shrink)

Context: Nurses are often hesitant to talk about ethical issues in their practice for many unique and valid reasons. What if the burden of risk was lifted upon retirement, even if just slightly? The purpose of this study was to explore retired nurses’ reflections on their experiences of ethical issues and decision making in various nursing practice settings throughout their careers and to glean recommendations for ethics in contemporary nursing practice. Methods: Data were collected via in-depth, individual, semi-structured interviews. Guided (...) by an interpretive, descriptive approach, data were managed with NVivo v.11 and analyzed with an inductive, comparative, thematic approach. In northern Ontario, two nurse researchers co-interviewed eight retired nurses with decades of practice experience across diverse Canadian health care settings. Ethics approval was obtained through Lakehead University’s Research Ethics Board. Findings: Three themes emerged to address ethical issues in practice; these are creativity, resourcefulness, and a strong sense of community with other nurses. Further, the retired nurses’ collated reflections on ethics in practice are presented as the FIG model: Fellowship, Ingenuity, and Gumption. Conclusions: This study identifies ethical underpinnings that retired nurses have used to effectively respond to ethical issues in their practice. Those who are currently nursing, and nursing as a profession, may wish to recognize and retain these strategies in order to continue to deliver a high standard of quality, ethical care. Recommendations for practice, research, and education are offered. (shrink)

Having hope that a terminally ill patient may recover is not an unfamiliar sight in intensive care units across the globe. However, cultural heritage may make it even tougher. This fictional case study, which is a collection of years of experience, addresses decision-making within the Chinese Immigrant culture and focusses on how this may influence the care team. A new initiative, the Goals of Care team, is also described.

The contentious, topical debate about whether faith-based health care organizations should be granted accommodation on the basis of institutional conscientious objection to medical assistance is dying is addressed through a comparative analysis of arguments on both sides of the issue that references such relevant considerations as: claimed ‘moral-authority’, competing rights-based claims, obligations arising from patient welfare principles, formal justice, dissimilarity in consequences, and two illustrative arguments from analogy. The analysis leads to the conclusion that nonconditional accommodation on the basis of (...) institutional conscientious objection to MAiD is not ethically acceptable in Canada. A compromise mechanism, consisting of a suggested set of pragmatic conditions, is proposed that could effectively balance the competing moral responsibilities that arise from this conclusion and a core assumption of the paper, i.e., that some dominant faith-based health institutions can legitimately request, and expect, that provincial/territorial governments pay them a measure of respect in their operational, health-care-delivery decision making because of these institutions’ long history of providing high quality, health care in Canada. It is further suggested that provincial/territorial governments only allow large, publicly funded, faith-based health care organizations to enact a conditional version of accommodation on the basis of institutional conscientious objection to MAiD in circumstances where the organization has entered into a formal agreement with the relevant health department to meet the proposed, compromise conditions. (shrink)

This short perspective piece is about the documentation of clinical ethics consultation in Canada. It is written at a time when the Canadian Association of Practicing Health Care Ethicists is endeavoring to develop standards of practice for clinical ethics in Canada. This brief commentary is informed by my experience working in clinical ethics in three different provinces, but it is primarily an attempt to draw attention to the normative questions: How much and what kinds of information should be included in (...) clinical ethics documentation? Where should ethics consultation reports be saved, and who should have access to them? These questions are, more fundamentally, about how we should balance concern for privacy, confidentiality, professional integrity, accountability and the promotion of trust. They are also about where clinical ethics fits within the broader Canadian health system. (shrink)