Research in an Electronic Age
Thursday, February 6th, 2014
Montreal General Hospital - Osler Amphitheater A6.105
12:00 - 1:30
Martin Fiset, B.Eng, Msc., Senior Security Analyst, MUHC Security Governance group, MUHC
Martin Fiset will begin this session by looking at the impact of the recent changes in Quebec Laws (Loi#30, June 2013), which could facilitate national and international health research by allowing the usage of internet tools. Electronic consent, secured social networks and chat groups, online questionnaires and databases are some examples that we will cover. We will look at these tools through an ethics and security lens to raise awareness in the MUHC research community about the risks involved, pathways to eliminate or to reduce them, and highlight best practices.
Linda Furlini, PhD, Quality Assurance and Education Officer, Research Ethics Office, MUHC
The ethical principles that apply to research remain constant, but new internet tools can give rise to unanticipated ethical issues that are both complex and challenging. Linda Furlini will address elements that require consideration before submitting a study for ethics review.
Stéphanie Lamarche, MSc, Science/Study Review Coordinator, Clinical Research Core Services, RI MUHC
When employing the eReviews online electronic submission tool, many have questions, such as: How is the system accessed? How are studies created and tracked? What is key to effectively managing communications between reviewers and research staff? Stéphanie Lamarche will highlight how to optimize its use.
James Ellasus, BA, Ethics Review Intake and Administration, Research Ethics Office, MUHC
At the Research Ethics Office, we receive many questions related to eReview. James Ellasus will provide insight on this electronic submission tool to facilitate the ethics review process, including the initial review of a new study, continuing review and other submission processes related to on-going studies.
Seldom Heard: The Perspectives of Clinical Research Participants
Wednesday, March 12th, 2014
Livingston Hall, Montreal General Hospital – L6.500
12:00 – 1:30
Wherever and whenever clinical research is conducted, research participants inevitably develop certain thoughts and emotions about their experiences. Yet, seldom, if ever, are they asked to share them. Jane, Joanne and Nick are three research participants who believe it is important to attune members of the research community to 'hearing' research participants' experiences. They will share their stories and highlight a spectrum of ethical issues. This session is meant to spur reflections about best ethical practices as well as the value of ‘hearing’ research participants.
Beyond Consent: Revisiting Notions of Vulnerability in Psychiatric Research
Presentation by Emily Bell, PhD
Wednesday May 7th, 2014
Montreal Neurological Institute: Brain Tumor Research Centre
Room: de Grandpré Communications Centre
12:00 - 1:00
Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. A common ethical concern in psychiatric research trials is how the participant’s disease itself, or present mental state, may impair decision-making capacity and the ability to provide free and informed consent to enter the trial. A frequent question is whether and how patients with psychiatric conditions can ethically be enrolled in more invasive medical trials, such as deep brain stimulation trials for refractory depression or obsessive compulsive disorder. I will propose an expanded view of vulnerability which moves beyond a focus on consent and the intrinsic attributes of participants towards the shared contributions of research participants and investigators in the context of research. In addition, I will offer specific suggestions for how relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices.
Emily Bell completed a postdoctoral fellowship at the Neuroethics Research Unit, Institut de recherches cliniques de Montreal, Canada, in Spring 2010. Dr Bell has since been an Associate Researcher at the Unit. Her MSc and PhD research in Psychiatry at the University of Alberta focused on investigating brain activity in mood disorders and anxiety disorders using functional magnetic resonance imaging (fMRI). Her postdoctoral work examined ethical and social challenges in deep brain stimulation (DBS) based on a Canadian multi-site investigation of neurosurgical units. She is an investigator within the Neuroethics Core of NeuroDevNet, a Canadian Network of Centre of Excellence. In the past, Dr. Bell has been awarded support from the Social Sciences and Humanities Research Council (SSHRC), the Fonds de la recherche en santé du Quebec (FRSQ), and the Canadian Institutes of Health Research (CIHR). Some of her current active research areas include investigating the relationship of vulnerability to informed consent in invasive psychiatric research trials, ethical challenges in the development and application of biomarkers for neurodevelopmental disorders, professionalism and responsible conduct of research in the neurosciences, and the role and contribution of deliberation and consultation in bioethics.
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