All seminars will be hosted virtually for Winter 2022. Registration is required and registration pages will be made available below.
Winter 2022 Events
Community-Led Research Governance: Envisioning the Future through Dialogue
April 7th, 2022 11:00-16:00 EST
April 8th, 2022 12:00-14:00 EST
This virtual, two-day workshop will showcase the innovative and radical strategies of community-led research governance across Canada. The first day will consist of panel presentations by Indigenous and urban communities who will share their experiences with research, their community-based research ethics governance strategies, and their perspectives on how to re-envision current systems of research oversight for meaningful community involvement. The second day will provide interested communities, researchers, and those working in the research ethics space with the opportunity to join each other in conversation. Led by our expert facilitator, we will have breakout group and big group discussions on the roles and responsibilities of stakeholders, challenges, opportunities and resources, and finally, recommendations to secure greater community involvement in research governance.
This workshop will be virtual and have French/English simultaneous translation.
View the full-sized poster here: community_research_governance_workshop_poster_en.pdf
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Gouvernance de la recherche par la communauté : Envisager l'avenir par le dialogue
le 7 avril 2022 11h00 - 16h00 HNE
le 8 avril 2022 12h00 - 14h00 HNE
Cet atelier virtuel de deux jours présentera les stratégies novatrices et radicales de la gouvernance communautaire de la recherche au Canada. La première journée consistera en des présentations de groupes d'experts par des communautés autochtones et urbaines qui partageront leurs expériences en matière de recherche, leurs stratégies de gouvernance de l'éthique de la recherche communautaire et leurs perspectives sur la façon de repenser les systèmes actuels de surveillance de la recherche pour une participation significative de la communauté. La deuxième journée permettra aux communautés intéressées, aux chercheurs et à ceux qui travaillent dans le domaine de l'éthique de la recherche de se réunir pour discuter. Sous la direction de notre animatrice experte, nous aurons des discussions en petits groupes et en plénière sur les rôles et les responsabilités des intervenants, les défis, les possibilités et les ressources, et enfin, des recommandations pour assurer une plus grande implication de la communauté dans la gouvernance de la recherche.
Cet atelier virtuel sera proposé avec une traduction simultanée français/anglais.
Voir l'affiche ici: Affiche Gouvernance de la recherche par la communauté
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Relational Autonomy and Direct-to-Consumer Health Apps
Thursday, March 31, 2022 - 14:30 - 16:00 EDT
Clinical Associate Professor, UBC
Associate Professor (Adjunct), UCSF
Regional Director of Ethics (Northern California), Providence
According to industry reports, there are more than 350,000 direct-to-consumer (DTC) health apps, with more being added each day. Enthusiasts claim that these platforms can democratize health information and promote user autonomy by allowing them to bypass traditional routes for accessing real-time health information and empowering them to seek professional attention (only) when necessary.
Utilizing a relational framework and illustrated by various examples, this presentation critically explores how these emerging technologies may ironically compromise not only users’ autonomy and well-being, but also restructure therapeutic relationships and impose additional burdens on the health system. In particular, I argue that the broader social phenomenon of self-quantification via indefinite tracking, manifested through digital health apps, may exert further power and control over patients and healthy consumers by medicalizing and pathologizing bodies as sources of worry that require constant surveillance and evaluation. The increasing expectation to use these apps is turning users’ intimate embodied experiences into quantified and commercialized data, instructions for self-discipline, and care work. Such techno-medicalization intersects with social and professional messages that continuously monitoring one’s body is simply the rational and responsible thing for health maintenance. I argue that DTC health apps that continuously collect and analyze user information regardless of clinical utility may alienate and marginalize people’s embodied experience in ways that compromise users’ self-identity rather than promote self-knowledge.
This event is sponsored by the Med Class of 1970.
Emerging Therapies for Orphan Diseases: Ethics and Economics
March 25th, 2022
The last decade has witnessed significant advances in regenerative medicines, particularly in the context of rare and hereditary diseases. Many such regenerative medicines are expensive and unlikely to fail traditional cost-utility analyses, thus placing heavy financial pressures on healthcare systems.
Until now, healthcare systems have been able to accommodate the costs of treating orphan diseases, given the small number of treatments available and the rarity of disease. However, as regenerative treatment approaches advance and precision medicine qualifies more and more patients as having orphan diseases, healthcare systems will face increasing challenges balancing the needs of patients with orphan diseases with those with more prevalent diseases.
This half-day symposium will bring together philosophers, health economists, clinicians, patients and policy-makers to address the ethics of resource allocation for rare diseases, particularly in the context of expensive treatment approaches like gene therapy. The event will involve four 20-minute presentations from diverse stakeholders, followed by a 1-hour panel discussion addressing whether- and how much- fair healthcare systems ought to budget for new, expensive regenerative medicines.
Please note that simultaneous translation will be available for this event.
This event is sponsored by the Department of Equity, Ethics and Policy (DEEP) and the Class of Med ‘70.
View the full poster here Symposium 2022 Poster
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Thérapies émergentes pour les maladies orphelines : éthique et économie
Le 25 mars 2022
10h00 - 13h00
La dernière décennie a été marquée par des avancées significatives en médecine régénérative, notamment pour les maladies rares et héréditaires. Or, les médicaments régénératifs sont coûteux et échouent rarement aux analyses traditionnelles de coût-utilité, ce qui exerce une forte pression financière sur les systèmes de santé.
Jusqu’à présent, les systèmes de santé ont pu absorber les coûts du traitement des maladies orphelines, étant donné le peu de traitements disponibles et la rareté des maladies. Cependant, avec l’évolution des traitements régénératifs et de la médecine de précision, qui détecte un nombre croissant de cas de maladies orphelines, les systèmes de santé font face à une conciliation de plus en plus difficile entre les besoins liés aux maladies orphelines et ceux des patients atteints de maladies plus répandues.
Ce symposium d’une demi-journée réunira des philosophes, des économistes de la santé, des cliniciens, des patients et des décideurs politiques pour aborder les enjeux éthiques de l’allocation des ressources pour les maladies rares, en particulier dans le contexte d’approches coûteuses comme les thérapies géniques. Le programme comprend quatre présentations de 20 minutes de divers intervenants, suivies d’un débat d’une heure sur la question des ressources à allouer, dans des systèmes de santé équitables, aux nouveaux traitements coûteux en médecine régénérative.
Veuillez noter que la traduction simultanée sera disponible pour cet événement.
Cet événement est parrainé par le Département de l'équité, de l'éthique et des politiques (DEEP) et la classe de Med '70.
Voir l'affiche complète ici Affiche Symposium 2022
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Thursday 10 February 2022 @2:30 PM
Carl Elliott, University of Minnesota
Honor, Shame and Exile: The Moral Geography of Whistleblowing in Human Subjects Research
When human research subjects are mistreated or abused, it is rare for anyone to blow the whistle. Most bystanders remain silent in the face of wrongdoing. The rare whistleblowers who do speak out present a moral puzzle that needs explanation. I will argue that understanding the act of whistleblowing means understanding the language of shame and honor that sociologists have declared obsolete, but whose moral force many of us still feel.
Thursday 4 November 2021 @ 1 PM
Barbara Bierer, Harvard Medical School
Substantiating justice in clinical research
The events of the last 18 months have animated discussions of justice, inclusion, and equity – and inequities – in health, health care, and clinical research. Here we examine the foundational ethical principle of justice in and its application in clinical research. Achieving a balance between inclusion of underserved and underrepresented populations in clinical research and appropriate protection for vulnerable individuals and communities is often difficult to achieve. Barriers to inclusion differ for different marginalized groups as do effective approaches to address those barriers. We will discuss the right to access clinical research, challenges to inclusion, and practical steps that can be considered to address underrepresentation in research and to advance equity and justice.
Thursday 25 February 21 @ 1 PM-2:30 PM
The Psychedelic Resurgence in Psychiatry: Ethics, Epistemology, and Enthusiasm
For more information: https://www.mcgill.ca/biomedicalethicsunit/psychedelicresurgence
Thursday 12 November 2020 @ 1 PM
Jennifer Miller, Yale School of Medicine
Data sharing, research equity, and the role of the Good Pharma Scorecard
This talk will briefly review key ethics concerns about the pharmaceutical industry, focusing on data sharing and equity in research as well as the accessibility of novel new medicines for middle and low income countries. The role of the Good Pharma Scorecard in benchmarking practices and catalyzing reforms where needed will also be explored.
Thursday 8 October 2020 @ 1 PM
Glenn Cohen, Harvard Law School
Artificial Intelligence and Heath Care: Legal and Ethics Issues
The world is paying increasing attention to the integration of Artificial Intelligence (AI) especially machine learning (ML) into health care. Some of the talk is hope, some of it is hype, but some of it is already being introduced into clinical care. This talk will give a general overview of the legal and ethical issues raised by this trend, including questions such as:
What rules should govern the acquisition of patient data to build medical AI and the privacy of patient information?
Is pre-market approval of some medical AI necessary? How should regulators approach the task of reviewing medical AI? How should they manage updates?
What role should patients have in deciding when medical AI is used in their care? Is there an obligation for clinicians to get informed consent for the use of AI, even when that AI is not apparent to the patient and instead just advising the clinician?
How should ethicists and regulators manage concerns about equity – both equitable access to models that actually are successful and problems of “bias” or even “discrimination” by models?
Tuesday 26 November 2019 @ 1:30 PM
Ariella Binik, McMaster University
Delaying and Withholding Interventions: Ethics and the Stepped Wedge Trial
Wednesday 16 October 2019 - Projection Week Seminar with Mara Buchbinder
Making Death’ in the Era of Medical Aid-in-Dying
Organized in partnership with the Department of Social Studies of Medicine
For more information on Projection Week: https://projectionweek.ca/en
Wednesday 17 April 2019 at 10 AM
Fareed Awan, University of Minnesota
Connecting Exploitation and Injustice in Research Ethics
Exploitation is a central topic of biomedical ethics, but remains contentious. In this talk, I will present a relational account of exploitation, where the wrong of exploitation is defined as a failure of a relationship dynamics, contra views of exploitation that take maldistribution as the primary concern. My view is that corroding the ability to resist the causes of exploitation, namely oppression and degradation, is unjust, at least within the context of biomedical research, where power, knowledge, and authority imbalance is particularly ingrained. Research that (a) exploits or (b) corrodes the ability of vulnerable groups to avoid exploitation are both sources of injustice, even if the relationship is mutually beneficial and consensual.
Thursday 25 April 2019 at 4:30 PM
Book Launch of "Ethical Issues in Women;s Healthcare: Practice and Policy"
Edited by Lori d'Agincourt-Canning & Carolyn Ells
In the foyer of 3647 Peel Street
Friday, February 1st @ 3:15
Phoebe Friesen, University of Oxford
Is Schizophrenia Research Under Threat?: How funding structures and patient groups shape scientific knowledge
Two significant shifts are taking place within psychiatry. The first shift involves the replacement of the DSM (Diagnostic and Statistical Manual) criteria with RDoC (Research Domain Criteria), in research funded by the National Institute of Mental Health (NIMH), the world’s largest funder of psychiatric research. Moving away from the discrete diagnostic categories of the DSM, RDoC prioritizes basic science research and refrains from drawing a line in advance between pathological and non-pathological experiences. The second shift has been taking place in schizophrenia research over several decades and involves the adoption of wider outcome measures related to quality of life in place of narrow measures such as symptom scales. This change is largely a result of the influence of patient groups. It is argued that this second shift has been successful in bringing to light several explanatory models of schizophrenia that are likely to bear fruit in terms of both understanding schizophrenia and developing tools and treatments for those living with the condition. In light of this, this presentation asks whether the shift to RDoC will threaten the gains associated with research related to quality of life in schizophrenia. In response, it is suggested there is both reason to be wary and reason to be hopeful when it comes to schizophrenia research and funding based on RDoC.