Eric Racine

Institut de recherches cliniques de Montréal | IRCM · Pragmatic Health Ethics Research Unit

Background Owing to their low prevalence, rare diseases are poorly addressed in the scientific literature and clinical practice guidelines. Thus, health care workers are inadequately equipped to provide timely diagnoses, appropriate treatment, and support for these poorly understood conditions. These clinical tribulations are experienced as moral c...

Background: Transition from paediatric to adult care is challenging for youths with a chronic condition. Most transition programmes place high value in autonomy and independence. We undertook a qualitative study to: (1) identify the needs and aspirations of youths and (2) better understand the well-being and flourishing of youths. Methods: Semi-...

Background Medical assistance in dying (MAiD) sparks debate in several countries, some of which allow or plan to allow MAiD where a mental disorder is the sole underlying medical condition (MAiD-MD). Since MAiD-MD is becoming permissible in a growing number of jurisdictions, there is a need to better understand the moral concerns related to this op...

Addiction is a common condition affecting millions of people worldwide of which only a small proportion receives treatment. The development and use of healthcare services is influenced by how addiction is understood (e.g., a condition to treat, a shameful condition to stigmatize), notably with respect to how volition is impacted (e.g., addiction as...

Introduction Transition from pediatric to adult healthcare is a multifaceted and consequential process with important health implications for youth. Although research on transition has grown significantly, research on transition for patients living with an inborn error of immunity (IEI) is scarce. We undertook a qualitative study to better understa...

Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults liv...

The legalization of cannabis in Canada instantiates principles of harm-reduction and safe supply. However, in-depth understanding of values at stake and attitudes toward legalization were not part of extensive democratic deliberation. Through a qualitative exploratory study, we undertook 48 semi-structured interviews with three Canadian stakeholder...

Invasive brain-computer interfaces hold promise to alleviate disabilities in individuals with neurologic injury, with fully implantable brain-computer interface systems expected to reach the clinic in the upcoming decade. Children with severe neurologic disabilities, like quadriplegic cerebral palsy or cervical spine trauma, could benefit from this...

Socially assistive robots are being developed and tested to support social interactions and assist with healthcare needs, including in the context of dementia. These technologies bring their share of situations where moral values and principles can be profoundly questioned. Several aspects of these robots affect human relationships and social behav...

Objective: Deep brain stimulation (DBS) and whether it alters patient personality is a much-debated topic within academic literature, yet rarely explored with those directly involved. This study qualitatively examined how DBS for treatment-resistant depression impacts patient personality, self-concept, and relationships from the perspectives of bo...

Amyotrophic lateral sclerosis (ALS) is an incurable neurodegenerative disease that leads some people with the disease to consider medical assistance in dying (MAiD). In this article, we describe how a variety of moral problems can emerge from this particular context and affect the well-being of people with ALS, their loved ones, and their caregiver...

Background The COVID-19 pandemic has created a global health crisis, leading to stigmatization and discriminatory behaviors against people who have contracted or are suspected of having contracted the virus. Yet the causes of stigmatization in the context of COVID-19 remain only partially understood. Using attribution theory, we examine to what ext...

BACKGROUND Owing to their low prevalence, rare diseases are poorly addressed in the scientific literature and clinical practice guidelines. Thus, health care workers are inadequately equipped to provide timely diagnoses, appropriate treatment, and support for these poorly understood conditions. These clinical tribulations are experienced as moral c...

Aim: We examined physicians' perspectives on the mental capabilities of pediatric patients with unresponsive wakefulness syndrome (UWS) and their attitudes towards limiting life-sustaining treatment (LST) in an international context. Method: A questionnaire survey was conducted among 267 neuropediatricians, practicing in 65 countries. Comparison...

The work of public safety personnel (PSP; e.g. firefighters, police officers, and paramedics, among others) is essential to society but is practically and ethically complex, especially with the increased challenges posed by the COVID-19 pandemic. The strain on mental health in this population of workers and volunteers has been the focus of recent r...

As brain-computer interfaces are promoted as assistive devices, some researchers worry that this promise to "restore" individuals worsens stigma toward disabled people and fosters unrealistic expectations. In three web-based survey experiments with vignettes, we tested how refusing a brain-computer interface in the context of disability affects cog...

Introduction Moral judgment is of critical importance in the work context because of its implicit or explicit omnipresence in a wide range of work-place practices. The moral aspects of actual behaviors, intentions, and consequences represent areas of deep preoccupation, as exemplified in current corporate social responsibility programs, yet there r...

Introduction. Prognosis is an essential component of informed consent for medical decision making. Research shows that physicians display discrepancies in their prognostication, leading to variable, inaccurate, optimistic, or pessimistic prognosis. Factors driving these discrepancies and the supporting evidence have not been reviewed systematically...

With the coming into force of the Quebec Act respecting end-of-life care in 2015, nearly 30 Interdisciplinary Support Groups (ISGs) were formed to accompany practitioners and managers in the clinical, administrative, legal, and ethical practice of Medical Assistance in Dying (MAiD). Today, significant variability is observed in the constitution, ro...

Ethics is often viewed as the elaboration of and compliance to norms, a.k.a. as the deductive model of ethics. This is well illustrated by the mainstream development of codes of ethics and ethics committees in the healthcare setting and beyond. Drawing upon a recent synthesis of pragmatist insights on the nature of ethics as well as contemporary sc...

Background Moral questions are vital questions because they concern what is esteemed to be the best action, the best choice and, ultimately, the best life to live. Health ethics which aims to address these moral questions has contributed to moving ethics toward more experience-based and user-oriented ethics theory and methodology. Despite this, cur...

Over the last two decades, researchers have promised “neuroprosthetics” for use in physical rehabilitation and to treat patients with paralysis. Fulfilling this promise is not merely a technical challenge but is accompanied by consequential practical, ethical, and social implications that warrant sociological investigation and careful deliberation....

Context Clinicians use brain magnetic resonance imaging (MRI) to discuss neurodevelopmental prognosis with parents of neonates with hypoxic-ischemic encephalopathy (HIE) treated with therapeutic hypothermia (TH). Purpose To investigate how clinicians and parents discuss these MRI results in the context of HIE and TH and how these discussions could...

Ethics designates a structured process by which important human values and meanings of life are understood and tackled. Therein, the ability to discuss openly and reflect on (aka deliberation) understandings of moral problems, on solutions to these problems, and to explore what a meaningful resolution could amount to is highly valued. However, the...

Many services can assist autistic people, such as early intervention, vocational services, or support groups. Scholars and activists debate whether such services should be autism-specific or more general/inclusive/mainstream. This debate rests on not only clinical reasoning, but also ethical and social reasoning about values and practicalities of d...

Scholars and activists debate whether people on the autism spectrum should access autism-specific services or general/inclusive/mainstream services. This article presents quantitative results from a mixed-methods survey of autistic adults and parents/guardians of autistic people in Canada, France, Germany, Italy, and the United States. Respondents...

Background Functional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome (UWS) and the minimally conscious state (MCS). It remains unclear how it informs surrogate decision-making. Objective To explore how the next of kin of patients with disorders of consciousness (...

Gilbert and colleagues (2018) point out the discrepancy between the limited empirical data illustrating changes in personality (and related concepts of identity, agency, authenticity, autonomy, and self, i.e., PIAAAS) following implantation of deep brain stimulating (DBS) electrodes and the vast number of conceptual neuroethics papers implying that...

The article Pragmatismand the Importance of Interdisciplinary Teams in Investigating Personality Changes Following DBS

This commentary is on the invited reviews by Hart et al. To view these papers visit https://doi.org/10.1111/dmcn.15022

Background: How “success” is defined in clinical trials of deep brain stimulation (DBS) for refractory psychiatric conditions has come into question. Standard quantitative psychopathology measures are unable to capture all changes experienced by patients and may not reflect subjective beliefs about the benefit derived. The decision to undergo DBS f...

Across societies, cultures, and political ideologies, autonomy is a deeply valued attribute for both flourishing individuals and communities. However, it is also the object of different visions, including among those considering autonomy a highly valued individual ability, and those emphasizing its relational nature but its sometimes-questionable v...

Adolescents with chronic health conditions transitioning from pediatric to adult healthcare services experience a wide array of difficulties. In response, transition programs have been developed. Transition programs commonly embody goals such as autonomy and independence. However, these may not be highly valued by young adults and their families. T...

The notion of voluntariness, notably the inability to refrain from using an addictive substance, is central to addiction. This review examines different constructs measuring voluntariness in the context of drug addiction. We found 117 articles featuring 123 distinct scales for 11 of the 16 constructs initially searched. Self-efficacy was by far the...

Suicide occurs in people of all ages and backgrounds, which negatively affects families, communities, and the health care providers (HCPs) who care for them. The objective of this study was to better understand HCPs' perspectives of everyday ethical issues related to caring for suicidal patients, and their perceived needs for training and/or suppor...

Research conducted on Brain-Computer Interfaces (BCIs) has grown considerably during the last decades. With the help of BCIs, users can (re)gain a wide range of functions. Our aim in this paper is to analyze the impact of BCIs on autonomy. To this end, we introduce three abilities that most accounts of autonomy take to be essential: (1) the ability...

Earp and colleagues (2021) make a strong case for the complete decriminalization and even the legalization of recreational drug use based on the negative impact of the “War on drugs” on racialized persons. Several other negative implications of this War are also identified such as the growth of criminal groups and the collateral impact on women’s h...

Stimulant drugs, transcranial magnetic stimulation, brain-computer interfaces, and even genetic modifications are all discussed as forms of potential cognitive enhancement. Cognitive enhancement can be conceived as a benefit-seeking strategy used by healthy individuals to enhance cognitive abilities such as learning, memory, attention, or vigilance...

Objectives: Practices of social inclusion are important for maintaining the relationships of persons with dementia and are associated with positive clinical outcomes. The objective of this study was to explore the in-action practices of social inclusion in the activity center of a community-based organization. Methods: This study applies an ethnogr...

**READ IT AT https://rdcu.be/b4bIb** Growth in autism research necessitates corresponding attention to autism research ethics, including ethical and meaningful inclusion of diverse participants. This paper presents the results of a review of research ethics literature, strengthened by consultation with a task force involving autism professionals, f...

Psychiatric neurosurgery has resurfaced over the past two decades for the treatment of severe mental health disorders, with improved precision and safety over older interventions alongside the development of novel ones. Little is known, however, about current public opinions, expectations, hopes, and concerns over this evolution in neurotechnology,...

Headlines in 2019 are inundated with claims about the “digital society,” making sweeping assertions of societal benefits and dangers caused by a range of technologies. This situation would seem an ideal motivation for ethics research, and indeed much research on this topic is published, with more every day. However, ethics researchers may feel a se...

Participatory research can change the view of children from research subjects to active partners. As active partners, children can be recognized as agents who can contribute to different steps of the research process. However, “participatory research” is an umbrella term that covers both the collection of data with children and children’s participa...

Our recent publication in Neuroethics re-constructed the perspectives of family caregivers of patients with disorders of consciousness (DOC) on functional neurodiagnostics (Schembs et al., Neuroethics, 2020). Two papers criticized some of our methodological decisions (Peterson, Neuroethics, 2020; Andersen et al., Neuroethics, 2020) and commented on...

Background People with fetal alcohol spectrum disorder (FASD) and women who drink alcohol while pregnant can experience stigma, possibly exacerbated by stereotyped media portrayals. Method To understand experiences of FASD stakeholders and reactions to news coverage, we conducted twelve focus groups across three categories: (1) people with FASD; (...

Seeking children’s assent has been put forward as a way to foster children’s involvement in the healthcare decision-making process. However, the functions of the concept of assent within clinical care are manifold, and methods used to recognize children’s capacities and promote their involvement in their care remain debated. We performed an instrum...

Research participants are crucial to the entire research enterprise, but they are still predominantly conceived as mostly passive, ‘silent’ partners in the field of research ethics. Participants generally have very limited opportunities to share their lived experiences of participation in research and their views about the ethics of research. This...

Background and Aims The first hybrid artificial pancreas (AP) systems with insulin only (mono-hormonal) have recently reached the market while next generations systems are under development including those with glucagon addition (bi-hormonal). Understanding the expectations and impressions of future potential users about AP systems is important for...

Research ethics scholarship often attends to vulnerability. People with autism may be vulnerable in research, but are also vulnerable to unjust exclusion from participation. Addressing the needs of participants with autism can facilitate inclusion and honor the bioethics principle of respect for persons while accounting for risk and vulnerability....

Deep brain stimulation (DBS) for Parkinson’s disease successfully alleviates motor symptoms, but unanticipated changes in personality, self, and relationships can occur. Little is known about how these nonmotor outcomes affect patients and families. We prospectively examined the experience and meaning of DBS-related changes in personality and self...

The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing policies for pandemics differ by institution, health system, and applicable law. Most seem to agree that a patient’s ability to benefit from treatment and...

Lay abstract: Research ethics means issues that concern the welfare and wellbeing of people who take part in research. It is important in all scientific studies. Ethics helps people who do research treat people who take part in research fairly and with respect. This article is about day-to-day ethics when autistic people take part in research. We...

Youth with neurologic conditions experience multiple life transitions. The transfer from pediatric to adult health care systems exemplifies one such complex and multifaceted transition that occurs in parallel with developmental, legal, and social changes that may influence the roles and responsibilities of youth and their caregivers. As a result, e...

Context: In most jurisdictions where medical-aid-in-dying (MAiD) is available, this option is reserved for individuals suffering from incurable physical conditions. Currently, in Canada, people who have a mental illness are legally excluded from accessing MAiD. Methods: We developed a questionnaire for mental health care providers to better underst...

Aim To identify the expectations of a diversified sample of informed adults with type 1 diabetes on their prospective use of a hybrid closed‐loop system. Methods Semi‐structured interviews were conducted with 16 adults with type 1 diabetes who shared their expectations on an experimental hybrid closed‐loop system after receiving information on its...

Research ethics extends beyond obtaining initial approval from research ethics boards. The previously established person-oriented research ethics framework provides guidelines for understanding ongoing ethics throughout the tasks of a research project, in a variety of research contexts. It focuses primarily on the relational and experiential aspect...

The concept of vulnerability plays a central role in research ethics in signaling that certain research participants warrant more careful consideration because their risk of harm is heightened due to their participation in research. Despite scholarly debates, the descriptive and normative meanings ascribed to the concept have remained disengaged fr...

Empowerment in research is important in many autism and autistic communities and an important part of ‘nothing about us without us’. It is also an important component of person-oriented research ethics. This article reviews the literature on ethics in autism research for information related to decision-making empowerment for autistic people. A revi...

Pregnancies can be complicated by findings of congenital malformations of the fetus or threatened preterm labour. A physician's prognosis regarding the outcomes of these high-risk pregnancies plays an important role in counselling parents. There is substantial discrepancy and variability in medical prognostication, influenced by many factors not ye...

The idea that neuroscience has the potential to enrich and have fundamental implications for ethics is not new but rather part of an ongoing debate about the contribution of neuroscience to the humanities. Already in 1967, physician and neuroscientist Paul MacLean wrote that understandings of the neuronal bases of empathy had the potential to chang...

The neuroscience of empathy is an active area of research that has led to fundamental contributions to our understanding of its cognitive mechanisms and neural circuitry. However, these contributions to knowledge do not constitute a new “brain-based ethics” or the like. Rather, we argue that, situated within an interdisciplinary neuroethics framewo...

Organizational neuroscience is a recent area of research. Given the enthusiasm of researchers and organizations themselves, the main focus and efforts of the last 15 years have been invested in the development of research and its applications. Ethical as well as critical views on this research have remained marginal. We believe this first book on o...

Type 1 diabetes management requires regular blood glucose measurements and tailored insulin administration to prevent its complications. An artificial pancreas is developed to automate insulin therapy, thereby improving its safety and effectiveness. Despite its benefits compared to conventional approaches, the artificial pancreas raises ethical con...

Understanding and improving how organizations work and are managed is the object of management research and practice, and this topic is of longstanding interest in the academia and in society at large. More recently, the contribution that the study of the brain could make to, notably, our understanding of decisions, emotional reactions, and behavio...

Vulnerability is as a central concept in research ethics and typically serves to identify individuals or groups whose participation in research prompts specific concerns or warrants special consideration. While theoretical discussions on vulnerability have contributed valuable insights to discussions of mental health research and care, they have no...

Since the 1960s, scientists, engineers, and healthcare professionals have developed brain–computer interface (BCI) technologies, connecting the user’s brain activity to communication or motor devices. This new technology has also captured the imagination of publics, industry, and ethicists. Academic ethics has highlighted the ethical challenges of...

The question as to whether people with an addiction have control (and to what extent) over their addiction, and voluntarily decide to use substances is an ongoing source of controversy in the context of research on addiction, health policy and clinical practice. We describe and discuss a set of five challenges for further research into voluntarines...

In many ways, the contributions in this book illustrate how the culture of research and research ethics presents challenges to the inclusion and participation of people with cognitive impairments as genuine agents. A culture of regulatory research ethics has institutionalized ethics as soft law with bureaucratic and administrative overtones. This d...

Scientists, engineers, and healthcare professionals are currently developing a variety of new devices under the category of brain-computer interfaces (BCIs). Current and future applications are both medical/assistive (e.g., for communication) and non-medical (e.g., for gaming). This array of possibilities comes with ethical challenges for all stake...

**SharedIt Link: https://rdcu.be/bThEj** Bioethics has made a compelling case for the role of experience and empirical research in ethics. This may explain why the movement for empirical ethics has such a firm grounding in bioethics. However, the theoretical framework according to which empirical research contributes to ethics—and the specific role...

Forms of Artificial Intelligence (AI), like deep learning algorithms and neural networks, are being intensely explored for novel healthcare applications in areas such as imaging and diagnoses, risk analysis, lifestyle management and monitoring, health information management, and virtual health assistance. Expected benefits in these areas are wide-r...

The debate on “cognitive enhancement” has moved from discussions about enhancement in adults to enhancement in children and adolescents. Similar to positions expressed in the adult context, some have argued that pediatric cognitive enhancement is acceptable and even laudable. However, the implications differ between the adult and the pediatric cont...

Background: Fetal alcohol spectrum disorder (FASD), a complex diagnosis that includes a wide range of neurodevelopmental disabilities, results from exposure to alcohol in the womb. FASD remains poorly understood by Canadians, which could contribute to reported stigma faced by both people with FASD and women who drink alcohol while pregnant. Methods...

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by...

** VIEW FULL TEXT FOR FREE AT https://rdcu.be/bdSny ** Objective: Prognosis of Hypoxic-Ischemic Encephalopathy (HIE) remains challenging and uncertain. This paper investigates how physicians understand and address the ethical challenges of prognostic uncertainty in the case of neonatal HIE,contextualized within the social science literature. Study...

Variation in water temperature can have important effects on the energetics underlying metabolism, growth, and reproduction of many organisms. In order to anticipate how a species' allocation of energy may change in a warming ocean, we need to know the degree to which processes such as metabolic rate change with temperature (i.e., the thermal sensi...

Building on Canada’s strong traditions in neuroscience and ethics, neuroethics provides a backbone for the evolving Canadian Brain Research Strategy (CBRS) that, from the outset, incorporates ethically responsible discoveries in brain science into clinical, societal, educational, and commercial innovation.

Predicting neurologic outcomes for neonates with acute brain injury is essential for guiding the development of treatment goals and appropriate care plans in collaboration with parents and families. Prognostication helps parents imagine their child's possible future and helps them make ongoing treatment decisions in an informed way. However, great...

People with fetal alcohol spectrum disorder (FASD), a complex and controversial neurodevelopmental disability caused by alcohol exposure in the womb, report experiences of stigma in different parts of their lives. The media, sometimes central to how a public understands and constructs marginalized identities, have a notable history of poorly repres...

Background Some university students consume pharmaceutical stimulants without a medical prescription with the goal of improving their academic performance. The prevalence of this practice has been well documented in the US, but less so in other countries. The potential harms of using prescription stimulants require a better understanding of the pre...

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T-tests for the manipulation checks for low- and high-stakes vignettes. (DOCX)

Summary of the findings of the ADC-components. (DOCX)