Emily Bell’s research while affiliated with McGill University and other places

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: To better understand how information about FASD is presented in the public sphere, we conducted content analysis of 286 articles from ten major English-language Canadian newspapers (2002-2015). We used inductive coding to derive a coding guide from the data, and then iteratively applied identified codes back onto the sample, checking inter-coder reliability. Results: We identified six major themes related to clinical and scientific media content: 1) prevalence of FASD and of women’s alcohol consumption; 2) research related to FASD; 3) diagnosis of FASD; 4) treatment of FASD and maternal substance abuse; 5) primary disabilities associated with FASD; and 6) effects of alcohol exposure during pregnancy. Discussion: Across these six themes, we discuss three instances of ethically consequential exaggeration and misrepresentation: 1) exaggeration about FASD rates in Indigenous communities; 2) contradiction between articles about the effects of prenatal alcohol exposure; and 3) scientifically accurate information that neglects the social context of alcohol use and abuse by women. Respectively, these representations could lead to harmful stereotyped beliefs about Indigenous peoples, might generate confusion about healthy choices during pregnancy, and may unhelpfully inflame debates about sensitive issues surrounding women’s choices. All Rights Reserved ©, 2019 John Aspler, Natalie Zizzo, Emily Bell, Nina Di Pietro, Eric Racine

This report originated from discussions at the Annual Brain Development Conference in late 2013 between researchers in the Neuroethics Core and Autism Spectrum Disorders Project of NeuroDevNet. Discussants felt that return of research results is a pertinent issue but that researchers are missing a comprehensive picture of the recommendations, approaches and empirical data related to the return of research results in genetics studies in children, in neurodevelopmental disorders, and specifically in autism. This report provides an overview of recent genetic studies of autism spectrum disorder (ASD), and reviews the ethical guidance (policies and peer-reviewed literature) and best practices on the return of individual research results in adult and pediatric genetic research. We focus on this case because of the wealth of genetic research being carried out in families and cohorts to explain the etiology of ASD and because there is a burgeoning literature on parental perspectives on the return of results in this case. The empirical perspectives are collected and summarized and provide context with regard to researcher and parent perspectives on the return of genetic results in ASD studies. We conclude by making recommendations about the return of both incidental and ASD-related findings and highlight issues that merit further discussion, including the role of the child or adolescent with developmental disability in decision-making, and the importance of risk communication. We believe that the report will be of use not only for those working in the area of ASD but more broadly in the field of pediatric genetic research and neurodevelopmental disorder research. For example, the publication of new evidence showing that genetic alterations play an important role in the etiology of cerebral palsy in some children means that genetic research may becoming increasingly common in other areas of the study of neurodevelopmental disorders.

Background The concept of vulnerability has held a central place in research ethics guidance since its introduction in the United States Belmont Report in 1979. It signals mindfulness for researchers and research ethics boards to the possibility that some participants may be at higher risk of harm or wrong. Despite its important intended purpose and widespread use, there is considerable disagreement in the scholarly literature about the meaning and delineation of vulnerability, stemming from a perceived lack of guidance within research ethics standards. The aim of this study was to assess the concept of vulnerability as it is employed in major national and international research ethics policies and guidelines. Methods We conducted an in-depth analysis of 11 (five national and six international) research ethics policies and guidelines, exploring their discussions of the definition, application, normative justification and implications of vulnerability. ResultsFew policies and guidelines explicitly defined vulnerability, instead relying on implicit assumptions and the delineation of vulnerable groups and sources of vulnerability. On the whole, we found considerable richness in the content on vulnerability across policies, but note that this relies heavily on the structure imposed on the data through our analysis. Conclusions Our results underscore a need for policymakers to revisit the guidance on vulnerability in research ethics, and we propose that a process of stakeholder engagement would well-support this effort.

Predicting neurological outcomes of neonates with acute brain injury is an essential component of shared decision-making, in order to guide the development of treatment goals and appropriate care plans. It can aid parents in imagining the child's future, and guide timely and ongoing treatment decisions, including shifting treatment goals and focusing on comfort care. However, numerous challenges have been reported with respect to evidence-based practices for prognostication such as biases about prognosis among clinicians. Additionally, the evaluation or appreciation of living with disability can differ, including the well-known disability paradox where patients self-report a good quality of life in spite of severe disability. Herein, we put forward a set of five practice principles captured in the “ouR-HOPE” approach (Reflection, Humility, Open-mindedness, Partnership, and Engagement) and related questions to encourage clinicians to self-assess their practice and engage with others in responding to these challenges. We hope that this proposal paves the way to greater discussion and attention to ethical aspects of communicating prognosis in the context of neonatal brain injury.

Everyday ethics refers to those issues which have a sometimes unrecognized moral dimension and that arise regularly within healthcare and research. These issues are often contrasted to dramatic ethics issues (i.e. issues that have seemingly higher stakes such as those arising in acute care situations or with invasive or life-threatening interventions). Claims have been made that scholarly bioethics tends to focus on dramatic ethics to the detriment of everyday ethics discussions. However, empirical evidence showing this has been lacking. Our own research investigating bioethics discussions in the Parkinson’s disease literature suggested this trend. Consequently, we decided to characterize the context and content of the Parkinson’s disease bioethics literature to empirically test the hypothesis that everyday ethics is under discussed. We conducted a broad literature search using the keywords “Parkinson’s disease” AND (“ethics” OR “bioethics”) and classified results inductively based on the context in which the bioethics discussion occurred. In line with our hypothesis and initial observations, we found that there is indeed a greater focus on dramatic ethics where topics such as deep brain stimulation and neuronal cell transplantations, dominated bioethics discussions. Given the potential utility of everyday ethics in improving healthcare and research, this mismatch in focus ought to be addressed. There is a clear need for further understanding and discussion of everyday ethical issues in scholarly bioethics.

Background Patient‐centred care is a recommended model of care for Parkinson's disease (PD). It aims to provide care that is respectful and responsive to patient preferences, values and perspectives. Provision of patient‐centred care should entail considering how patients want to be involved in their care. Objective To understand the participation preferences of patients with PD from a patient‐centred care clinic in health‐care decision‐making processes. Design, setting and participants Mixed‐methods study with early‐stage Parkinson's disease patients from a patient‐centred care clinic. Study involved a modified Autonomy Preference Index survey (N=65) and qualitative, semi‐structured in‐depth interviews, analysed using thematic qualitative content analysis (N=20, purposefully selected from survey participants). Interviews examined (i) the patient preferences for involvement in health‐care decision making; (ii) patient perspectives on the patient–physician relationship; and (iii) patient preferences for communication of information relevant to decision making. Results Preferences for participation in decision making varied between individuals and also within individuals depending on decision type, relational and contextual factors. Patients had high preferences for communication of information, but with acknowledged limits. The importance of communication in the patient–physician relationship was emphasized. Discussion Patient preferences for involvement in decision making are dynamic and support shared decision making. Relational autonomy corresponds to how patients envision their participation in decision making. Clinicians may need to assess patient preferences on an on‐going basis. Conclusion Our results highlight the complexities of decision‐making processes. Improved understanding of individual preferences could enhance respect for persons and make for patient‐centred care that is truly respectful of individual patients’ wants, needs and values.

Hypoxic ischemic encephalopathy is the most frequent cause of neonatal encephalopathy and yields a great degree of morbidity and mortality. From an ethical and clinical standpoint, neurological prognosis is fundamental in the care of neonates with hypoxic ischemic encephalopathy. This qualitative study explores physician perspectives about neurological prognosis in neonatal hypoxic ischemic encephalopathy. This study aimed, through semistructured interviews with neonatologists and pediatric neurologists, to understand the practice of prognostication. Qualitative thematic content analysis was used for data analysis. The authors report 2 main findings: (1) neurological prognosis remains fundamental to quality-of-life predictions and considerations of best interest, and (2) magnetic resonance imaging is presented to parents with a greater degree of certainty than actually exists. Further research is needed to explore both the parental perspective and, prospectively, the impact of different clinical approaches and styles to prognostication for neonatal hypoxic ischemic encephalopathy.