Digital Commons Network^™

Ethics And Epidemiology Workshop Report: Towards Ethics-Informed Epidemiology And Epidemiology-Informed Ethics, Zoe Ritchie, Brendan T. Smith Phd, Maxwell J. Smith Phd

Health Studies Publications

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Two key groups of researchers have worked in parallel to advance health equity—one on the descriptive component (those in public health sciences, e.g., epidemiologists) and one on the normative component (those in the humanities and social sciences, e.g., philosophers and ethicists). Yet a significant gulf exists between their respective research. Consequently, advances in thinking regarding the philosophical underpinnings and normative requirements of health equity have been largely divorced from the design of public health interventions that seek to reduce health inequities. As a consequence, public health interventions aiming to advance health equity may fail to target the most appropriate populations …

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Responsibility, Recognition And Representation: The Ethical Bases Of Truth Evaluation In Political Narrative Analysis, Paul Nesbitt-Larking

Faculty Publications

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Just as even the most personal of our narratives can ultimately be traced back to our communal pasts, so they are worked up, told, and retold through complex chains of sharing: Situated utterances, partial hearings and fractured representations circulate meanings and interpretations through relays of retelling as social agents listen to and tell their own and each other’s stories. Narrative political psychologists explore how the storied lives of political actors are both shaped by their historical and structured circumstances and reproduce their ongoing political agency. In such contexts, how do narrative political psychologists assess truth claims? Guided by a Critical …

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The Mathematics Of Risk: An Introduction To Guaranteed Data De-Identification, Kristi Thompson

Western Libraries Presentations

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This webinar is devoted to the mathematical and theoretical underpinnings of guaranteed data anonymization. Topics covered include an overview of identifiers and quasi-identifiers, an introduction to k-anonymity, a look at some cases where k-anonymity breaks down, and anonymization hierarchies. The presenter will describe a method to assess a survey dataset for anonymization using standard statistical software and consider the question of "anonymization overkill". Much of the academic material looking at data anonymization is quite abstract and aimed at computer scientists, while material aimed at data curators does not always consider recent developments. This webinar is intended to help bridge the …

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A Case Analysis Of Partnered Research On Palliative Care For Refugees In Jordan And Rwanda, Sonya De Laat, Olive Wahoush, Rania Jaber, Wejdan Khater, Emmanuel Musoni, Ibraheem Abu Siam, Lisa Schwartz, Matthew Hunt, Lynda Redwood-Campbell, Laurie Elit, Elysée Nouvet, Rachel Yantzi, Kevin Bezanson, Carrie Bernard, Takhliq Amir, Ani Chénier, Gautham Krishnaraj, Corinne Schusterwallace

Health Studies Publications

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© 2021, The Author(s). Background: This case analysis describes dilemmas and challenges of ethical partnering encountered in the process of conducting a research study that explored moral and practical dimensions of palliative care in humanitarian crisis settings. Two contexts are the focus of this case analysis: Jordan, an acute conflict-induced refugee situation, and Rwanda, a protracted conflict-induced refugee setting. The study’s main goal was to better understand ways humanitarian organizations and health care providers might best support ethically and contextually appropriate palliative care in humanitarian contexts. An unintended outcome of the research was learning lessons about ethical dimensions of transnational …

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Caregiver Reactions To Neuroimaging Evidence Of Covert Consciousness In Patients With Severe Brain Injury: A Qualitative Interview Study, Andrew Peterson, Fiona Webster, Laura Elizabeth Gonzalez-Lara, Sarah Munce, Adrian M. Owen, Charles Weijer

Brain and Mind Institute Researchers' Publications

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Background: Severe brain injury is a leading cause of death and disability. Diagnosis and prognostication are difficult, and errors occur often. Novel neuroimaging methods can improve diagnostic and prognostic accuracy, especially in patients with prolonged disorders of consciousness (PDoC). Yet it is currently unknown how family caregivers understand this information, raising ethical concerns that disclosure of neuroimaging results could result in therapeutic misconception or false hope. Methods: To examine these ethical concerns, we conducted semi-structured interviews with caregivers of patients with PDoC who were enrolled in a concurrent neuroimaging research program designed to detect covert consciousness following severe brain injury. …

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Practising Diversity At The Stratford Festival Of Canada: Shakespeare, Performance And Ethics In The Twenty-First Century, Erin Julian, Kim Solga

Department of English Publications

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What does it mean to ‘practise’ diversity in Shakespeare production in the twenty-first century, specifically in an Anglo-American context? How is ‘practising’ diversity, from devising and directing to work in the rehearsal hall and on audience engagement, materially different from the now-familiar (but still important) goal of ‘representing’ diverse bodies on stage? In the last twenty years, debates about what the diversification of Shakespeare performance – along racial lines, gender lines, the lines of age and ability – means or could mean, and the simultaneous interrogation of what ‘Shakespeare’ signifies, for whom, and to whose benefit, have become increasingly urgent …

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Addressing Obstacles To The Inclusion Of Palliative Care In Humanitarian Health Projects: A Qualitative Study Of Humanitarian Health Professionals’ And Policy Makers’ Perceptions, Matthew Hunt, Elysée Nouvet, Ani Chénier, Gautham Krishnaraj, Carrie Bernard, Kevin Bezanson, Sonya De Laat, Lisa Schwartz

Health Studies Publications

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© 2020, The Author(s). Background: Humanitarian non-governmental organizations provide assistance to communities affected by war, disaster and epidemic. A primary focus of healthcare provision by these organizations is saving lives; however, curative care will not be sufficient, appropriate, or available for some patients. In these instances, palliative care approaches to ease suffering and promote dignity are needed. Though several recent initiatives have increased the probability of palliative care being included in humanitarian healthcare response, palliative care remains minimally integrated in humanitarian health projects. Methods: We conducted a qualitative study using interpretive description methodology to investigate humanitarian policy-makers’ and health care …

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Context-Specific Challenges, Opportunities, And Ethics Of Drones For Healthcare Delivery In The Eyes Of Program Managers And Field Staff: A Multi-Site Qualitative Study, Vyshnave Jeyabalan, Elysée Nouvet, Patrick Meier, Lorie Donelle

Health Studies Publications

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© 2020 by the authors. Licensee MDPI, Basel, Switzerland. Unmanned aerial vehicles (UAVs), also known as drones, have significant potential in the healthcare field. Ethical and practical concerns, challenges, and complexities of using drones for specific and diverse healthcare purposes have been minimally explored to date. This paper aims to document and advance awareness of diverse context-specific concerns, challenges, and complexities encountered by individuals working on the front lines of drones for health. It draws on original qualitative research and data from semi-structured interviews (N = 16) with drones for health program managers and field staff in nine countries. Directed …

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Sustainability Of Public Health Interventions: Where Are The Gaps?, David Roger Walugembe, Shannon Sibbald, Marlene Janzen Le Ber, Anita Kothari

Health Studies Publications

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The current scholarly focus on implementation science is meant to ensure that public health interventions are effectively embedded in their settings. Part of this conversation includes understanding how to support the sustainability of beneficial interventions so that limited resources are maximised, long-term public health outcomes are realised, community support is not lost, and ethical research standards are maintained. However, the concept of sustainability is confusing because of variations in terminology and a lack of agreed upon measurement frameworks, as well as methodological challenges. This commentary explores the challenges around the sustainability of public health interventions, with particular attention to definitions …

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Women's Perspectives On The Ethical Implications Of Non-Invasive Prenatal Testing: A Qualitative Analysis To Inform Health Policy Decisions, Meredith Vanstone, Alexandra Cernat, Jeff Nisker, Lisa Schwartz

Paediatrics Publications

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Background: Non-Invasive Prenatal Testing (NIPT) is a technology which provides information about fetal genetic characteristics (including sex) very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women's social and ethical values. We approach the need for ethical policy-making by studying the use of NIPT and emerging policy in the province of Ontario, Canada. Methods: Using an …

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Ethical Responsibility - An Arendtian Turn In Leadership Ethics, Rita A. Gardiner Ph.D

Education Publications

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This paper adopts an Arendtian approach to consider the interconnections among responsibility, ethics, and leadership. Considering responsibility through an Arendtian lens may offer insights into leadership ethics. These insights may help deepen our understanding of the nascent theory of responsible leadership. In particular, Arendt's emphasis on judgment illustrates the importance of responsible action. Engaging with the Arendtian corpus may help us rethink connections among leadership, ethics, and responsibility in new and productive ways. This engagement with Arendt's work can in turn add value to thinking about responsible, ethics, and leadership.

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Pediatric Home Mechanical Ventilation: A Canadian Thoracic Society Clinical Practice Guideline Executive Summary, Reshma Amin, Ian Maclusky, David Zielinski, Robert Adderley, Franco Carnevale, Jackie Chiang, Aurore Côté, Cathy Daniels, Patrick Daigneault, Christine Harrison, Sherri Katz, Krista Keilty, Carina Majaesic, Theo J. Moraes, April Price, Dhenuka Radhakrishnan, Adam Rapoport, Sheldon Spier, Surendran Thavagnanam, Manisha Witmans

Paediatrics Publications

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Over the last 30 to 40 years, improvements in technology, as well as changing clinical practice regarding the appropriateness of long-term ventilation in patients with “non-curable” disorders, have resulted in increasing numbers of children surviving what were previously considered fatal conditions. This has come but at the expense of requiring ongoing, long-term prolonged mechanical ventilation (both invasive and noninvasive). Although there are many publications pertaining to specific aspects of home mechanical ventilation (HMV) in children, there are few comprehensive guidelines that bring together all of the current literature. In 2011 the Canadian Thoracic Society HMV Guideline Committee published a review …

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Empowered To Name, Inspired To Act: Social Responsibility And Diversity As Calls To Action In The Lis Context, Sarah T. Roberts, Safiya Umoja Noble

FIMS Publications

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Social responsibility and diversity are two principle tenets of the field of library and information science (LIS), as defined by the American Library Association’s Core Values of Librarianship document, yet often remain on the margins of LIS education, leading to limited student engagement with these concepts and to limited faculty modeling of socially responsible interventions. In this paper, we take up the need to increase the role of both in articulating the values of diversity and social responsibility in LIS education, and argue the field should broaden to put LIS students and faculty in dialog with contemporary social issues of …

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Canadian Perspectives On The Clinical Actionability Of Neuroimaging In Disorders Of Consciousness, Grace Lee, Adrian C. Byram, Adrian M. Owen, Urs Ribary, A. Jon Stoessl, Andrea Townson, Christine Stables, Judy Illes

Brain and Mind Institute Researchers' Publications

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Background: Acquired brain injury is a critical public health and socioeconomic problem in Canada, leaving many patients in vegetative, minimally conscious, or locked-in states, unresponsive and unable to communicate. Recent advances in neuroimaging research have demonstrated residual consciousness in a few exemplary patients with acquired brain injury, suggesting potential misdiagnosis and changes in prognosis. Such progress, in parallel with research using multimodal brain imaging technologies in recent years, has promising implications for clinical translation, notwithstanding the many challenges that impact health care and policy development. This study explored the perspectives of Canadian professionals with expertise either in neuroimaging research, disorders …

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Ethics Of Neuroimaging After Serious Brain Injury, Charles Weijer, Andrew Peterson, Fiona Webster, Mackenzie Graham, Damian Cruse, Davinia Fernández-Espejo, Teneille Gofton, Laura E. Gonzalez-Lara, Andrea Lazosky, Lorina Naci, Loretta Norton, Kathy Speechley, Bryan Young, Adrian M. Owen

Paediatrics Publications

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Background: Patient outcome after serious brain injury is highly variable. Following a period of coma, some patients recover while others progress into a vegetative state (unresponsive wakefulness syndrome) or minimally conscious state. In both cases, assessment is difficult and misdiagnosis may be as high as 43%. Recent advances in neuroimaging suggest a solution. Both functional magnetic resonance imaging and electroencephalography have been used to detect residual cognitive function in vegetative and minimally conscious patients. Neuroimaging may improve diagnosis and prognostication. These techniques are beginning to be applied to comatose patients soon after injury. Evidence of preserved cognitive function may predict …

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Justification For Conscience Exemptions In Health Care, Lori Kantymir, Carolyn Mcleod

Philosophy Publications

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Some bioethicists argue that conscientious objectors in health care should have to justify themselves, just as objectors in the military do. They should have to provide reasons that explain why they should be exempt from offering the services that they find offensive. There are two versions of this view in the literature, each giving different standards of justification. We show these views are each either too permissive (i.e. would result in problematic exemptions based on conscience) or too restrictive (i.e. would produce problematic denials of exemption). We then develop a middle ground position that we believe better combines respect for …

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Beyond Obscenity: An Analysis Of Sexual Discourse In Lis Educational Texts, Heather Hill, Marni Harrington

FIMS Publications

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Purpose

– This research seeks to discover the type of discourse encouraged around controversial materials, particularly those of a sexual nature, in LIS educational texts. Censorship and controversial materials are often issues addressed in the LIS literature, but even with ideals of neutrality it can be difficult to remain balanced on certain issues, particularly those dealing with sex.

Design/methodology/approach

– A content analysis of 85 LIS texts on collection development, reference, and intellectual freedom was completed using the following thematic elements: sex, pornography, erotica, curiosa, facetiae, obscenity, censorship, and controversial materials. Deeper analysis of individual definitions and usages was informed …

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Moving Forward With A Clear Conscience: A Model Conscientious Objection Policy For Canadian Colleges Of Physicians And Surgeons, Jocelyn Downie, Carolyn Mcleod, Jacquelyn Shaw

Philosophy Publications

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No abstract provided.

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Paediatricians, Social Media And Blogs: Ethical Considerations, Thérèse St-Laurent-Gagnon, Kevin W. Coughlin

Paediatrics Publications

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The use of blogs, Facebook and similar social networking sites is rapidly expanding and, when compared with e-mail, may be having a significantly different impact on the traditional doctor-patient relationship. Characteristics specific to these online platforms have major implications for professional relationships, including the ‘Facebook effect’ (the relative permanence of postings) and the ‘online disinhibition effect’. The present practice point illustrates relevant ethical considerations and provides guidance to paediatricians and others concerning the prudent professional and personal use of social networking media.

L’utilisation des blogues, de Facebook et de sites de réseautage social similaires prend une expansion rapide. Par rapport …

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Morally Justifying Oncofertility Science, Carolyn Mcleod

Philosophy Publications

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Is research aimed at preserving the fertility of cancer patients morally justified? A satisfying answer to this question is missing from the literature on oncofertility. Rather than provide an answer, which is impossible to do in a short space, this paper explains what it would take to provide such justification.

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Achieving Obligation In Information Organization: Some Novel Approaches, Cary S. Daniel

Western Libraries Presentations

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Information organized in any fashion needs to be understood, needs to be communicated in order to be useful.

Baudrillard’s views on consumers in and of a postmodern society are employed to describe the users (researchers) vis-à-vis interactions with the metadata described. Hyperreality leads naturally into Introna’s call for a personal relationship as the sine qua non of obligation. This, along with Wittgenstein’s notion of ambiguities in language (meaning) grounded in activities and practices, leads to an ethical level of practice.

A number of models are suggested to aid in communication and achieve obligation in information organization.

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‘We Are Not Just Participants—We Are In Charge’: The Naccho Ear Trial And The Process For Aboriginal Community- Controlled Health Research, Traven Lea, Richard Murray, Margaret Culbong

Aboriginal Policy Research Consortium International (APRCi)

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Objective. Methodological criteria that characterise ethically sound community-based studies are often described in overviews but are rarely documented in clinical studies. Research investigating the health of Aboriginal Australians is often small-scale, descriptive and largely driven by non-Indigenous people. The ‘community-controlled’ model of research relating to Aboriginal peoples health is a form of ‘participatory’ research that shifts the balance of control towards those being researched. This paper describes the methodological issues and principles that underpin community-controlled health research; their practical application; and encourages their adoption in research involving Indigenous populations.

Design. Descriptive report of the methods used to conduct the landmark …

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