Nina Di Pietro’s research while affiliated with Douglas College and other places

The opioid crisis in Canada has led to over 9,000 opioid-related deaths. The impact of this crisis on frontline workers is poorly understood. We spoke to 14 frontline workers to explore the impact of the opioid crisis on their work, examine perceptions of supports in the workplace, and identify recommendations to mitigate overdose-related stressors. Findings suggest that workers are experiencing significant increases in stress/burnout. Perceived stressors included new/increased job duties, fear of deaths, inadequate staffing/training, heightened vigilance, and fears for safety. Additional counseling, debriefing, staffing, training, and recreation were recommended. Public policies favoring harm reduction are also discussed.

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

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 representing people with disabilities like FASD (including in Canada), which could increase their stigmatisation. Additionally, given its cause, women who drink while pregnant can also face stigmatisation – with some public discourses evoking narratives that promote blame and shame. To gain insight into the kinds of information presented to Canadians about FASD, alcohol, and pregnancy, we conducted a media content analysis of 286 articles retrieved from ten of the top Canadian newspapers (2002-2015). In this article, we report key themes we identified, most common being ‘crime associated with FASD’. We explore connections between this coverage, common disability stereotypes (i.e., criminal behaviour and ‘the villain’), FASD stigma, and expectations of motherhood.

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.

There is substantial literature on fetal alcohol spectrum disorder (FASD) research involving Aboriginal children, but little related literature on other common neurodevelopmental conditions such as autism spectrum disorder (ASD) or cerebral palsy (CP) for this population. As part of our work in cross-cultural neuroethics, we examined this phenomenon as a case study in Canada. We conducted semi-structured interviews with health researchers working on the frontline with First Nation communities to obtain perspectives about: (1) reasons for the lack of ASD and CP research within the Aboriginal context, (2) the potential ethical and social implications of this disparity, and (3) recommendations for change. Participants reported that the major barriers to engage in ASD or CP research are under-reporting and under-diagnosis of these conditions in Aboriginal communities, difficulties in establishing trust between community members and researchers, challenges in accessing children living under the care of child welfare services, and lack of support from universities and funding agencies to encourage community partnerships. They further perceived threats to justice as the population is denied the benefits of ASD and CP research, and stigma related to the possible over-representation of FASD in the population. The adoption of strength- and community-based practices to improve engagement and address disparities, and to create health databases with prevalence rates that are representative of all forms of disability in both Aboriginal and non-Aboriginal populations are critical steps to close these gaps.

Fetal alcohol spectrum disorder (FASD) is increasingly recognized as a growing public health issue worldwide. Although more research is needed on both the diagnosis and treatment of FASD, and a broader and more culturally diverse range of services are needed to support those who suffer from FASD and their families, both research and practice for FASD raise significant ethical issues. In response, from the point of view of both research and clinical neuroethics, we provide a framework that emphasizes the need to maximize benefits and minimize harm, promote justice, and foster respect for persons within a global context.

Parents and primary caregivers of children with Cerebral Palsy (CP) and Autism Spectrum Disorder (ASD) are faced with difficult treatment choices and management options for their children. The potential of stem cell technologies as an interventional strategy for CP and ASD has gained attention in the last decade. Information about these interventions varies in quality, resulting in a complex landscape for parent decision making for a child’s care. Further complicating this landscape are clinics that advertise these interventions as a legitimate treatment for a fee. In this study, we surveyed individuals who considered taking their child with ASD or CP abroad for stem cell interventions on their use of different sources of stem cell related health information and their level of trust in these sources. Participants reported that while the Internet was their most frequent source of information, it was not well-trusted. Rather, information sources trusted most were researchers and the science journals in which they publish, other parents of children with CP and ASD, and healthcare providers. These findings highlight a dichotomy between information-seeking preferences and information-trusted sources. We discuss the challenges of health science communication and present innovative opportunities to increase communication with trusted and reliable sources as part of an integrated multi-pronged approach.

Stem cell research has generated considerable attention for its potential to remediate many disorders of the central nervous system including neurodevelopmental disorders such as autism spectrum disorder (ASD) and cerebral palsy (CP) that place a high burden on individual children, families and society. Here we characterized messaging about the use of stem cells for ASD and CP in news media articles and concurrent dissemination of discoveries through conventional science discourse. We searched LexisNexis and Canadian Newsstand for news articles from the US, UK, Canada and Australia in the period between 2000 and 2014, and PubMed for peer reviewed articles for the same 10 years. Using in-depth content analysis methods, we found less cautionary messaging about stem cells for ASD and CP in the resulting sample of 73 media articles than in the sample of 87 science papers, and a privileging of benefits over risk. News media also present stem cells as ready for clinical application to treat these neurodevelopmental disorders, even while the science literature calls for further research. Investigative news reports that explicitly quote researchers, however, provide the most accurate information to actual science news. The hope, hype, and promise of stem cell interventions for neurodevelopmental disorders, combined with the extreme vulnerability of these children and their families, creates a perfect storm in which journalists and stem cell scientists must commit to a continued, if not even more robust, partnership to promote balanced and accurate messaging.

Several important areas of concern with regard to the growing use of -antipsychotics to treat young people with mental health conditions have been highlighted by contributing authors, including the need for more research on safety and efficacy, standardized health monitoring across Canadian hospitals and clinics, greater awareness and monitoring of adverse reactions in patients, improvements in the availability of nonpharmacological interventions, and changes in prescribing practices to reduce off-label and polypharmacy use. These concerns have not gone unnoticed. Policy makers, federal health agencies, industry, medical associations, and academic institutions have all worked together to find solutions and address these issues. We review these efforts, including any gaps, and highlight recommendations on how to move forward within four key domains: (1) health and safety monitoring, (2) informed consent, (3) clinical trials, and (4) pharmaceutical marketing regulatory policies.

There is a recent consensus that more clinical trials are required to assess the safety and efficacy of second-generation antipsychotic medications for children and youth. This shift represents a change in ethical thinking in recent decades. Historically there has been a reluctance to include children and adolescents in medical research due to their vulnerable status; however, this has led to a situation where the benefits of evidence-based medicine have been denied due to inappropriate extrapolation of adult data. This is especially pronounced in relation to antipsychotic medications and children who have psychiatric difficulties. Targeted initiatives have been introduced worldwide to open up clinical trials in pediatric populations. In this chapter, clinical trial registry data are presented in order to characterize the current landscape of clinical trial activity for children and adolescents and antipsychotic medications. These data are summarized and discussed with reference to the ethical considerations.